Living With Crohns Disease

Welcome to my personal website, Living With Crohns Disease! Unless you have Crohn’s or have lived in close proximity with someone who does, you can’t possibly know how difficult this disease is to deal with. It is something that affects an individual day-in and day-out in various ways and its effects can be triggered by various unknown factors within the body, many of which are simply the best guesses of researchers and medical professionals. Things such as stress, the diet and types of foods a person eats, and their level of physical activity, may all have implications in the condition of a person living with Crohns.

I’ve been living with Crohns disease for about seven years and not a day goes by in my life where I don’t think about it; the condition affects me in everything I do. So I’ve created this site to inform, instruct, and educate those living with Crohn’s disease and the people who surround and interact with them.

Living out each day while battling a chronic condition requires an immense amount of bravery. I’ve had people tell me they feel like they should be scraping it off the walls after I’ve released my barrage, but many times I can’t help it. Hopefully as I go through the various topics of this website and relate my own struggles and experiences to you, I’ll help you to better deal with the unearthly things this disease does to your body.

If you are unfamiliar with what Crohn’s Disease is, find out all about Crohns here.

Diseases like Crohn’s can be particularly difficult to deal with because not only does it cause pain and discomfort, but the nature of the condition itself isn’t easy to talk about or admit around friends and even family members. I’ve encountered several friends and acquaintances who have the disease, and have found some to be very open about their condition.

As for myself, I have never been the type of person who finds it easy to be open with complete strangers about what I’m going through. Maybe you can relate.

Always having to think about the next time you’ll use a bathroom (and where to find that bathroom) is a nuisance, and then having to deal with the noises and smells that result is enough to make even the most outgoing person into a quivering coward.

I do my best to talk plainly and openly on this website about what it’s like to have Crohns disease. My goal is to write about everything that I know from the hours upon hours of extensive research that I’ve done, as well as to share my own personal experiences and stories.

There’s plenty of stuff to look through, so go for it.

Comments

Comment from kevin schell
Time: July 4, 2009, 2:33 am

Hey I have crohns also. I live live with pain a, discomfort evryday its sucks do u know anything ab out remicade

Comment from HAZEL ABSTEN
Time: September 2, 2009, 1:33 am

I NEED A DITE FOR CHROINES . MY DAUGHTER JUST FOUND OUT 2 MONTHS AGO AND SHE 9IS BAD WITH IT. AND I NEED TO KNOW WHAT SHE MUST EAT AND NOT EAT . THANK YOU HAZEL ABSTEN

Comment from Kevin Schiffler
Time: October 5, 2009, 7:46 pm

Great web site and can’t wait to go through it in detail. I was working out at lunch hour today when I saw my first add ever on ESPN for Chron’s disease and it was for this site. It caught my attention big time. I have had Chron’s since 1976 (33 years) and am finally seeing public data like this through this great technology. I applaud you for doing this. Thank You!
Kevin

Comment from les shackelford
Time: October 6, 2009, 2:02 am

i also have crohns

Comment from robert
Time: October 6, 2009, 4:46 pm

i just wish i can get help that i can aford but i like what you have done to help me understand crohns

Comment from Mark
Time: October 8, 2009, 2:45 am

I was diagnosed with Crohn’s 27 years ago. I have had 3 surgeries – the last of which was 12 years ago – I feel blessed. I am 6 feet tall and weigh 200 lbs. At the lowest point of my life, (just before my second surgery) I weighed 155lbs and was suffering from the effects of malnutrition.

Hang in there, don’t give up. Get to know yourself intimately. I try to Avoid (in order of importance) stress, onions, raw vegetables, alcohol, caffeine, un-cultured dairy products,

it seems like a lot, but it is working for me (most of the time).

Feel free to contact me, if you need to vent – it helps.

Comment from joann milo-gipson
Time: October 11, 2009, 11:49 pm

I try to keep a positive attitude, but its hard. I’m always worried that I’ll soil myself while out. I try to know where every bathroom is. This is such a crazy disease, you can be fine one minute,and deathly ill the next. the vomiting, the pain,the diaherra that smells so bad it could clear grand central station in 0.5 seconds. My grandkids call me the pottyqueen, cause I’m in the bathroom so much. I pray daily that none of my kids,or grandkids have
this dreadful disease. How I got this disease I’ll never know. As I’m of black/hispanic discent.
And this disease usually strikes middle-aged Jewish women. Not to mention I wasn’t middle aged when I was diagonised, I was 25. I just want to talk to other people that have crohns.
I feel so alone.
THE POTTYQUEEN

Comment from Daniel
Time: October 12, 2009, 2:13 am

Just wanted to pass along a big THANK YOU for the great website!

Comment from mary pappani
Time: October 12, 2009, 12:16 pm

i have been living with crohn’s disease for 50 yrs. i am 65 and for the first time in my life i am almost able most of the time to live a normal life. i still suffer from daily symptoms , mostly at night so during the day i have a part-time job and do many other things that i am involved with. I THANK GOD FOR THIS BLESSING AT THIS TIME IN MY LIFE…MARY PAPPANI

Comment from nathan lester
Time: October 12, 2009, 8:44 pm

i want to say thank you for creating this site and drawing attention to this disease ive had early syptoms since i was 15 im nearly twenty one now it started as just nausea and abdominal pain then then i went into remission i was fine for years then it started again worse than ever now im lucky to leave my house curled up in the fetal position feeling like a professional boxer just used my torso as a punching bag is a normal day for me i never really had blood in my stool until recent but im the third generation in my family to get this or ulcerative colitis everyday is a struggle especially being unemployed in michigan i have no insurance im currently collecting unemployment and using that for medication but i cant afford treatment or a lot of pills so im just glad its gone public theres so many of us out there and i want the world to know that you can make it through this even if you say you cant make it through life cuz your afraid your not alone so my brothers and sisters we can do this i know i aint giving up without a fight

Comment from ken cheek
Time: October 14, 2009, 12:30 pm

I have had Chron’s for 36 years. It for the most part has been manageable. Hoever four yeasr ago I had an obstruction. Then no more until four weeks ago. I ended up in the hospital for six days. Then two wweks later to the day I found myself with another obstruction and back in the hospital. Thank goodness both times I avoided surgery. iT is a very tough disease but you dealk with it. I want to thank you for this websight. We all need to know we are not alone.
Ken

Comment from Doug
Time: November 3, 2009, 12:32 am

Well, I’m 14 now and I was diagnosed when I was 12 or 13 I don’t know. BUT all I did with my mom was go to a homeopathic doctor. It went away within the month of taking the potions. I won’t lie it was a few hundred bucks but It worked and now there’s no symptoms of it anymore. :) Hope I helped

Comment from Greg D
Time: November 9, 2009, 12:43 am

To: Kevin,
I have been on Remicade for a couple of years now and the benefits can be great. I have a home health care nurse that comes to my house every 2 months to administer the IV. It worked great the first 5 or 6 times, but now i’m not getting as much relief. This is partly due to alot of my pain coming from a triple bowel re-section in 2005. However, it has kept alot of the inflammation down, and beats the heck out of the Prednisone therapy. My Dr. only gives it to people who have Chronic symptoms, such as myself. I wish I could have gotten it earlier in the disease process, maybe it would have stopped the progression faster. Good luck. Greg

Comment from barbara
Time: November 12, 2009, 4:44 pm

I have had this for 34 years in 2002 the doctors said I have liver disease. I say it was from the 5 years of off and on steriods they say it because I’m fat ps the steriods got me up two 240 at 5’2 and i try to lose weight but that up sets my chron’s. they give me 8-10 years before my liver gives out i’m 56 and have stoped most of my drugs . I’m not sure what to do to help my liver.

Comment from barbara
Time: November 12, 2009, 5:04 pm

I found if I eat yogart when I start having a bad week it helps with diereha but my chron’s is just in my small intestent and at the start of my colen. my chron’s is in my joints and other parts of my body so I’m not so bad I can’t have the surgery because I don’t heal after them. But I notice that after my periods stopped my diereha got some what better I’m not sure what that means.

Comment from Emma Leigh
Time: November 15, 2009, 7:45 pm

I was diagnosed with Crohn’s disease about two weeks ago. I am now beginning to understand the pain and discomfort that I have been suffering from for years. My doctors are placing the facts together and they’re realizing that this has been with me since I was about 11. It’s so hard, I feel so alone, and being 15 now makes me feel isolated. Everyone else I know is “normal” in the sense of the word, and I have to be different. The medicines are starting to help a little, but it’s still so dis-heartening. When I go into doctors they have to question whether or not I’m being honest about my symptoms. To many of them, I am just a silly young girl. The hardest part though, is realizing that becaunse of this disease I will never be able to fully enjoy physical activities, or eat completely what I want to eat. And of course, the flair-ups are caused by stress and tension for me, which then just makes everything worse. Thank you for posting, it’s helped me feel not so alone because none of my friends can relate, and no one in my family has ever had any kind of these problems. I hope that in time, I can find a way to manage this all and find some kind of normal. With Crohn’s, normalcy is what there is to look forward too :)

Comment from Toni Z
Time: November 24, 2009, 8:51 pm

My daughter is 13 and was daignosed 6 years ago we do remicade every 8 weeks it is by ifusion only but it has been a god sent she has been in remition since. Si as a mom I feel everyones pain and wish I can take away the pain and suffering my daughter endures

Comment from Hank
Time: December 11, 2009, 7:25 pm

Hi,i have had Crohn`s disease for 35 years. I have had 3 surgeries where the Dr`s took a total of 5 ft of intestine out and i personally feel it was the worst thing they could have done considering it takes about 5-6 months of recovery from the surgery. To this day my family does not or will not even talk to my about the disease. As for going to the bathroom all the time and the smells that go with it, i have even been attacked after i came out of the bathroom by 3 guys because i stunk up the place. People who don`t have the disease can`t even imagine what a person goes thru everyday trying to live with the disease. I was working for the past 3 yearss at a company but after this past flare up of Crohn`s where i took 3 months off from work, the first day back to work the owners handed me a layoff notice immediatley and cancelled my insurance leaving me with nothing to help supprot myself or pay fpr my medical prescriptions. There are times when i can`t help but think about giving up.

Comment from daiel clark
Time: December 13, 2009, 5:52 am

i’m researching for a friend to get a better quality of life and always looking for more info.

Comment from LENA
Time: December 14, 2009, 12:21 am

I HAVE CROHNS AND IT IS REALLY SOMETHING TO DEAL WITH RIGHT NOW I HAVE A LOT OF FLARE UPS. TO EAT AND TIME IT GETS TO WERE IT IS GOING I’M GOING.THERE IS SO MUCH PAIN IN MY STOMACH THAT IT IS NOT FUN.I’VE BEEN LAIDED OFF OF MY JOB SO THERE IS NO MORE MEDICES FOR ME.TRIED TO GET INSURANCE TO MUCH CAN’T AFFORD. BUT I FOUND ONE THAT I COULD AFFORD BUT WHEN THEY FOUND OUT THAT I HAD A CHROIC DIEASE THATWAS OVER.

Comment from hank
Time: December 14, 2009, 9:08 pm

I have beenliving with crohn`s for over 30 years and have had 3 surgeries to remove approx. 4ft of intestine. Was the worst move i ever made, have not yet recovered from it or even close to being half way to normal. Its been hard talking to anyone about the problems i face everyday dealing with not being able to do much because i dont know when and urgency to race for the bathroom will happen so i dont go out much and have been living a hermit life.

Comment from keith
Time: December 15, 2009, 5:21 am

I have crohn’s i found out back in may of 2004 And had surgey been in and out of the hpspital many times i finly got a good doctor that is working with me and got me on the medison i need life has been hard i find each day is a fight. I am not the tipe that likes to talk about myself but i am finding that i need someone that knows what i am going throw i have been throw a
lot in the past few years and know i hope to talk to someone that knows what i am going throw. also i would like to know if thir is a diat that can help me

Comment from deborah berry
Time: December 16, 2009, 1:28 am

iv lived with chrons since my early teens diagnosed.1 surgery 2 years ago. many doctors. and my state wont even send my 2 an out of state hospital. my medical insurnce. im in and out of the e.r. alot. no support in my state and no 1 cares to help. medication has stopped working. now i honestly dont know what 2 do. my syptoms r worse now as new 1s appear. my diease is complaicated n severe. i live knowing that i deal alone with this n cry just trying 2 cope n pray. i am alone in my state. no 1 to help me talk about my chrons. n thats sad. thank you. debbie.

Comment from Bob K.
Time: December 20, 2009, 12:37 am

I have had Crohns since 1996 and have been on Remicade since 2000. It has been a miracle for me as I’ve been symptom free since beginning the infusions with the exception of one flair up about 3 yrs. ago. My doctor changed the frequency of the infusions from 12 wks. to 8 wks. and I’ve again been symptom free since then. I would highly recommend discussions the drug with your doctor. Although Remicade is expensive if Crohns is not controlled it is a EXTREMELY expensive disease over the course of a lifetime and can result in death. There are now other versions of the drug not cultured from mouse tissue in the rare event you have an alergic reaction. I have no side effects from the Remicade unlike most other drugs that suppress the immune system in a broader way.

Comment from Jami Myer
Time: December 27, 2009, 10:26 pm

I would like to learn more about this disease. Thanks.

Comment from temikia
Time: December 31, 2009, 7:21 am

I am 25 yrs old I was diagnosed 2weeks ago I almost didn’t make it home for xmas with my kids I have been sick for months and no doctor would listen to my symptoms I lost approx.70lbs and have suffered for months now I atleast know what’s wrong tryn to make it day by day .I read it was rare in african americans Is that true .

Comment from John
Time: January 25, 2010, 10:03 pm

I’m now 32, and have been dealing with Crohn’s for about 1 1/2yrs now. Two days before my honeymoon was over, I got Crohn’s. At first I thought it was food poisoning, then I was lactose intolerant, then Giardia. But I finally got diagnosed with a colonoscopy. Before Crohn’s, I weighed at my highest 299lbs at 6’2″, I now weigh 196lbs. I can’t tell you how bad using the bathroom around 15 times a day/night can to do to a person. I have been told, that there are about 5 different versions of Crohn’s. I have found that by talking to people about my condition, you start to realize that there are alot of people that themselves or know somebody that has Crohn’s. I hope one day, doctors can find a cure for our condition.

Comment from Willie “Dennis” Green
Time: January 27, 2010, 2:24 am

I have had Crohn’s for about 30 years and I am 63 years old. I just got over an eposide.
I was in the hospital for 6 days.
I am looking at taking a herbal medicine called “Primal Defense” the lady at the health food store says that people swear by it. I am on the down side (tapering off) of Predisone 20 mg
for a week then 10 then 5 and off of it. I hate to take it.

Has anyone taken this medicine called “Primal Defense”. MY doctor gave me some “Align”
which is a probiotic non prescription medication, but I have heard that the Primal Defense is much better. Has anyone taken it or is taking it or heard comments about it?
PLEASE let me hear from you.

I also wondered how KEN CHEEK avoided surgery for an intestional blockage twice.
I have had two surgeries for blockage so far.

THANKS for any replies.
Dennis

Comment from Karen Marais
Time: February 16, 2010, 8:49 pm

I was diagnosed with Crohns in 2001. I,ve been on Asacol which stopped working, had a colonoscopy two days ago and my colon is in a very bad state, my doctor says severe. He has now put me on a course of prednisone and Azamun. Can anyone who has taken Azamun tell me about their experiences on this drug because the written side effects sounds scary.

Comment from lindsey
Time: February 22, 2010, 11:09 pm

hi i have been suffering from cronic crohns for 10 years this morning the pain was so server i couldn’t get out of bed and i cryed all the way down stairs as i had to try my harest to move im a single mother of two and even my gp isnt helping my consultant is ready to do my next op on waiting list now but my gp is wanting my pain reliefe stoped wat can i do i cant manage day to day life without pain reliefe

Comment from Jeremy
Time: March 16, 2010, 1:57 am

hello I was diagnosed with Crohn’s disease about 5 months ago and I was looking through your website and would just like to say thank you for all your help. I would also like to thank you for suggesting the SCD diet because I have been looking for some kind of diet of eats and don’ts of Crohn’s (the doctor is not very helpful with something like that)

just one question. right now im having a small pain in my gut area, that I think is from Crohn’s, that has started hurting me about a week and a half ago. is there something that I can do to get this pain to go away? this is also messing up my back a little bit I think.

the doctor has proscribed Apriso which doing some research it is for UC but I don’t think I have UC. (unless Crohn’s is a form of UC).

as you can tell im very new to Crohn’s and just trying to learn all I can about it

Comment from Jeri Hunnell
Time: March 23, 2010, 1:33 pm

I am a 38 yr white female. I found out I have Crohns when I was about 20. For years it comes and goes. 2 years ago I had a blockage, when I had surgery they told me that my colon and small bowel were effective. Also removed my appendix which was found to have Crohns. Found a GI that finally began listening to me. I have been on Humira injections every other week but don’t think it works anymore. Lately, everything I eat goes straight through me. The stomach craps are horrible, I am home for the second day in a row from work. The inability to control bowel movements are the worst. At my GI appointment next week I am going to talk about the Humira and I don’t think it works anymore. Does anybody else get Humira injections? How are they working for you? ….. PS My 21 yr old daughter also has Crohns. She did Remicade for 4 years and has no sign of the disease!!

Comment from crohner
Time: March 25, 2010, 1:41 am

Thanks for your comments Jeri. I have actually been taking Humira injections for about three years now. I notice its effects tapering off toward the end of each two-week period, but for the most part it still seems to help somewhat. I watch what I eat and am otherwise unmedicated. I’ll stay off prednisone for anything but a short-term dosage if things get really bad – which they haven’t, thank God, since my resective surgery in ’07.

Comment from crohner
Time: March 25, 2010, 1:45 am

Jeremy – Crohn’s and UC are the two forms of IBD (inflammatory bowel disease). You’ll have random, unexplainable pains in different areas of your abdomen at various times, unfortunately. That’s part of the deal :-/

The best thing I can say to help any pain to go away is limit the things you eat. Over time you’re going to learn your own body so well – you’ll get used to what you can and can’t tolerate. Pay close attention to what you eat and then how you feel for the next day or two. It won’t take long before you’re finding out the kinds of things that trigger your symptoms. For me it’s leafy greens like lettuce, spinach, cabbage; chocolate; and potato products, that seem to give it to me the worst. Good luck and feel free to keep posting if you have any more questions someone here might be able to help you out with!

Comment from Shari Anthony
Time: April 25, 2010, 11:53 pm

I was diagnosed with UC in 1996, but really just tolerated the condition. Then one day in January of 2005, I began vomiting and thought I had the flu. Several hours later, I had emergent surgery for a small bowel resection and was told I had Crohns. I had been on a course of Prednisone for what I thought was a UC flare, and four days after surgery I coughed and the incision opened (was told due to the steriods, you don’t heal properly). I came out of a second emergency surgery with an open wound the size of a football and 5 inches deep. It took a year to heal, with home health coming to unpack the wound, clean it and repack it. I have since had 3 incisional hernia surgeries, and currently have the orgional hernia back as well as two more. I was laid off last year and was without the Pentasa from Feb 09 until Oct 09 where I landed in the hospital with another obstruction. I just barely avoided another bowel resection. At this point I had to move from South Carolina to Colorado to live with my only living relative, my sister, and I owe thousands of dollars in doctor bills for the last hospitalization. I had to move back to SC 3 weeks ago, am actively looking for work, and my son just recently returned from a year in Afghanistan. The stress is over taking me, and I feel I am on the verge of another flare, and scared to death. I have no insurance, and with needing to find work I cannot afford on any level to be hospitalized. I have never gone on line to look for any support or help, I’ve always just tried to deal with all of this on my own. The few people in my life it seems, don’t really want to hear about how I struggle daily with this disease. It actually seems they think I can control it somehow. I feel very hopeless about this disease. It doesn’t seem to matter if I eat or don’t eat, or what I eat. I mediate and pray to try to manage stress, nothing works anymore. I don’t believe the Pentasa is working anymore either, and I only have a couple months supply left anyway. I suppose I just wanted to talk about this to people that understand what living with this is like. Right now, my stomach is so distended, I look as though I’m pregnant. It’s all very embarrassing and I don’t know where to turn for help. I wish I had something helpful to share for others…I wish I knew what more to do. Thanks for listening.

Comment from Skip
Time: April 26, 2010, 7:02 pm

I had a bowel obstruction in the marines when I was 31. It was at the end of my small intestine. The doctor’s report said I had Crohn’s. Never went on any medication or other treatment. I got so I had to take Imodium every day to control my bathroom visits. When I did that, I’d get up at 4 AM, go to the bathroom 5 or 6 times in the next 45 minutes before going to the gym at 5 AM (I’m a morning person.) This January my Crohn’s came back for the first time in 35 years with a vengence. I had an ulcer at the end of my small intestine about the size of a man’s fist with my small intestines wrapped around it. The week before, my GI doc was unable to get the colonoscopy scope into my small intestine but it was not yet blocked. The pain the last week was really bad. They removed the ulcer, two feet of my small intestine, and fixed a hernia I didn’t know I had. They gave me some new medicine just before surgery in Feb that had only been out 3 months. I took it twice a day after surgery. It was to wake up your intestines quicker. I had my surgery on a Friday and was released the next Wednesday. I was back in the hospital a week and a half later with a massive infection I got while in the operating room. They put a drain in my abdomen, a week later replaced it with a larger drain, and removed it altogether a week later. It took 2-3 weeks to get my taste back and I lost 35.5 lbs. I’ve only put about 7-8 lbs back on even though I’m eating well. No meds for Crohn’s yet but they have me on Welchol to control the diarhea from all the bile in my gut which isn’t absorbed anymore which acts like a laxative. Now I have bloating and a lot of gas. I guess you trade off one thing for another. I’ve been pretty fortunate so far with only one reoccurence in 35 years. I have a good family and a good wife. God has really blessed me and used this past two months to grow me spiritually. That may offend some people these days; but, it’s the truth. There have been no miracle cures; but, God was there for me. I knew the “unknown mass” (the ulcer they removed) wasn’t cancer and told my wife so before surgery. I have insurance which changed from one plan to another after 3 days in the hospital. I had to start over on my deductible, etc. But I don’t have any anxiety over the bill (God’s doing). I’m also fortunate that I don’t seem to having any limitations on what I can eat. It’s been rough though with the pain before and after (during recovery). I used to work out a lot with weights. If you saw me with my shirt off now you’d think I was anerexic. I’m not complaining though. I’m 56 now and hopefully it will be a long time again before anymore surgeries.

Comment from Mike b
Time: May 7, 2010, 2:09 am

Have had crohns for 15 years had 3/4 of my large intesten removed and part of my colon
I have not been on any meds in 8 years no relaps belive it or not I stopped stressing and drank like a fish for three years and have not had a flare up since

Comment from nora
Time: May 11, 2010, 7:06 pm

i think i have it cant eat anything .because i will be running to the bathroom.

Comment from kevin bailey
Time: May 18, 2010, 2:47 am

Hey there my name is kevin i also have been liveing with crohns for about 7 and a half year i was wonding if you have could help me out with liveing in a house by your self what that would look like i a 17 and would love to here back from you thank you so much again kevin.

Comment from JANICE
Time: June 3, 2010, 1:51 pm

YOUR TV ADVERTISEMENT ON LIVING WITH CROHN’S DISEASE COMES ON TOO MANY
FREAKING TIMES! STOP THIS

Comment from crohner
Time: June 4, 2010, 1:13 pm

Hey Kevin, hopefully you’ll make it back to the site to check – for anyone else concerned about having crohn’s and living by yourself, don’t be. I prefer to have my privacy and have never needed to have anyone else around unless I was really sick, which doesn’t happen often enough that I need constant care. It’s not something you should be concerned about, as long as you are otherwise healthy and can get around okay (walking, stairs, heavy lifting, etc.)

Comment from crohner
Time: June 4, 2010, 1:16 pm

Lol @ JANICE – the TV ad is from Centocor, a pharmaceutical company that develops medications for Crohn’s disease. We’re not affiliated with them at all.

Comment from stephen forsyth
Time: July 7, 2010, 8:04 pm

I have had crohns disease for 32 years now, I have just takien redundancy from the firm I worked for as I am fed up living like an animal, toileting in the back of a van in a bucket, I count myself lucky I can pick up a reduced pension ( Im leaving my work 10 years earlier than normal ) but I would rather have a much lower lifestyle and be physically comfortable at home within easy reach of a toilet.
I had 3ft of my bowel removed about 8 yrs ago and although its not helped the dihoreha at least I have not had any more rectal bleeding and I have not had anything like as much colds / flu since then ( I think the infected gut was probably affecting my immune system )
what really annoys me is that people think I am super healthy as I only weigh 140 lbs and I am in my mid fifties, the trouble is they dont realise that everything I do has to be planned around easy access to toilets and the reason I have a low weight is that everything I eat passes straight through me

I am of the firm opinion that most healthy people just have no conception about what living with a disability is like, I still get stupid invites for a round of golf or meals in a resturant from those who should know better

Comment from Hybrid
Time: July 17, 2010, 1:16 pm

I was diagnosed with Ulercative Colitis at 15 and Crohn’s disease at 16. I am classified as a hybrid. It runs in our family, my father was diagnosed with U.C. at the age of 15 and my brother Crohn’s at 15. I have been off medicine for 10 years and have managed to keep myself without any severe flares by learning my body and what I can and cannot eat when. It is crazy the fact that one day I can have a salad and the next I can not. It’s great to see a site that allows a place for what many do not realize is more common than you think, just it is not discussed.

Comment from sarah
Time: July 26, 2010, 4:44 pm

im 25 and recently been told i have chrons disease. i am yet to be given my options about what i can do from now, but i have to say that this site and the comments from others have been most helpful in preparing me for what i am about to face. it is very difficult to find a website that doesnt baffle with long words, and definitions.
i would like to thank everybody for their honesty and input. will make my future choices a lot clearer coming from everyday people

Comment from Woody
Time: July 29, 2010, 2:24 pm

i am an 18 year old male who has been recentley diagnosed with Chrones disease. I have lost four stone in the past 5 months and even though i have been to my GP/Hospital on many occasions i am still losing weight slowly. I found myself at first eating a small amount of food after i had my colonoscopy however since then i beleive the medication i have been given is not working as effectivley as i thought it would. My parents are now starting to get extremely worried about me and i would like to know if there are any foods that will help my stomach get better? Please help :) x

Comment from MEL
Time: July 30, 2010, 7:48 pm

HI, I WAS TOLD I HAVE HAD THIS DISEASE SINCE I WAS 19 I AM ALMOST 50 NOW. IN 2007 I COLLASPED ON THE FLOOR I WOKE UP 4 DAYS LATER IN THE HOSPITAL THE SURGEON SAID I ALMOST DIED, TWO DAYS LATER I INFORMED THE MALE NURSE THAT SOMETHING WAS WRONG HE GAVE ME A PAIN PILL AND SOMETHING TO SLEEP, TWO HOURS LATER I AWOKE AND WHEN I STOOD UP MY DRAINAGE HOLE WENT OFF LIKE A SPRINKLER, ANYWAY THAT LED TO TWO MORE SURGERIES AND TWO BAGS ON MY STOMACH WHICH I HAD TO WEAR FOR A YEAR. IN FEB. 2010 I HAD ANOTHER SURGERY (RESECTION). I NO LONGER HAVE THE BAGS BUT BEWARE OF YOUR MAGNESIUM LEVELS AS I ALSO HAD TWO SIEZURES THIS DISEASE IS HORRIFIC. I TAKE ASACOL,PAIN MEDS, AND REMICADE TREATMENTS EVERY SIX WEEKS. MY CROHNS ISNT ACTIVE RIGHT NOW HOWEVER ALL OF THE NASTIEST EFFECTS ARE STILL THERE. I WATCH WHAT I EAT, SOMETIMES I DONT EAT FOR DAYS BECAUSE I HONESTLY FEEL BETTER WHEN I DONT. THE REMICADE TREATMENTS HELP BUT ONLY FOR A SHORT TIME. THOSE OF US WHO HAVE HAD OUR INTESTINES OR COLINS REMOVED CAN ALSO ADD ANOTHER PROBLEM TO OUR LIFES WHICH IS SHORT BOWEL DISEASE THATS WHY WE HAVE SO MANY BOWEL MOVEMENTS. I WAS LUCKY ENOUGH TO HAVE WORKED AND PAIDED MY FICA MOST OF MY LIFE SO I GET MY SSI AND HAVE MEDACAID AND JUST STARTED ON MEDICARE I FEEL BAD FOR ALL OF YOU OUT THERE WHO ARE BATTELING THIS CRAZY DISEASE WITHOUT ACCESS TO INSURANCE BECAUSE THAT IS A STRESSER IN ITSELF. HOWEVER I AM STILL GOING THROUGH ALL OF THE SYMPTOMS , NOTHING HAS CHANGED MUCH, HOPEFULLY THEY COME UP WITH A BREAKTROUGH SOON FOR ALL OF US. GOOD LUCK TO ALL OF YOU OUT THERE.

Comment from Debie
Time: October 20, 2010, 12:56 am

Please, help me out. Recently diagnosed with Crohn’s because of 5 obstructions in the small intestines in the last 4 months. No other symptoms (yet?) Afraid to eat and more afraid of treatment choices! Any suggestions? Please write back -

Comment from Ryan
Time: November 24, 2010, 5:36 am

@Debie
Hey Debie, don’t give up! Your doctors will figure out the best way to fix the blockages, and the best thing you can do is keep up your spirits! Keep eating, because if the other symptoms come on (i.e. diarrhea, vomiting) then malnutrition will only hit you faster (if at all), and you definitely do not want that. As of now there are tons of treatment options out there. I’m 21 at a University and have been living with Crohn’s for two years now. I spent 2 months in a hospital because I was negligent and did not eat when I was first experiencing the symptoms. I am currently 6’0″, 190lbs but had gotten down to 135 when I was diagnosed, losing 55 pounds in 4 months. Trust in your doctors, and have hope!

Comment from joan
Time: January 22, 2011, 6:21 pm

I have crohn’s disease in my large intestine. Three years ago I had surgery to take out most of my large intestine and part of my stomach because it had eaten through to my stomach. I watch my diet carefully and take Pentassa and haven’t had a problem. I take one anti-diarrahea tablet every morning and I am good for the day. Most of the blogs I read are of crohn’s of the small intestine. Anyone out there with large intestine crohn’s?

Comment from Heidy
Time: February 8, 2011, 8:39 pm

i have had crohn’s disease for 16 years..ive had a total colectomy with a jpouch placed, a small bowel resection and i had to have all my teeth removed and get a full set of dentures after my colectomy bc they were rotting out of my head due to malabsorption..People with crohn’s are some of the strongest ppl there are..they have to be..this disease is brutal and it can break a weaker person…i have so many other health issues that crohns has caused..im trying to find a new gi doctor but it is difficult bc i have heart problems as well..i went to see a prominent gi doctor in my town and he wouldnt take me as a patient bc i have “severe, complicated, atypical crohns”..it gets very frustrating..so now im battling the state to try and get disability which is hard for me to accept bc im only 35..my boyfriend and my best friend are my support system..to everyone with crohns, NEVER give up bc we are strong and can handle anything

Comment from Michelle
Time: February 18, 2011, 2:05 pm

To Heidy
I too had to go on disability at age 39. I’m now 44. Have had Crohn’s for 27 yrs…ugh! 3 surgeries, dozens and dozens of ER visits and admissions. Have only been in remission ONCE..for 5 mos while on Remicade. I also have a colostomy which I was happy about. I battle with depression and was suicidal at one point. I also have tons of complications and a severe, unresponsive case. It all sucks but am at peace with it. I used a couple of books to help me with filing for SSI. Nolo’s guide to Soc. Sec. Disability (getting and keeping your benifit and Know Your Rights. Handbook for patients with chronic illness. Written by an attorney who is a Crohn’s pt. Good Luck. Hope you are healthy (as can be) and happy! :)

Comment from Tricia
Time: February 22, 2011, 11:38 pm

I just found out that my friend has crohn’s disease and I’ve been doing research but my question is, is there anything I can do as a friend I want to be there for her and I want to help however I can …… any advise? I don’t want to be pushy I just want her to know I am there for whatever. PLEASE HELP

Comment from ben edgar
Time: March 28, 2011, 10:49 am

hi im wondering can i still do heavy lifting with having crohns disease

Comment from Michelle Rice
Time: April 7, 2011, 6:08 pm

I have had crohn’s for 8 years and was a former fedex employee at the memphis corporate office and was working extremely long hours with a new baby i planned for who was about 3 at the time. I left work on a stretcher three times rushed to the hospital with extreme pain, diarrhea and vomiting. Nobody in my family has it. I think extreme stress from many many different factors. I voluntarily quit fedex in 2003 after missing so much work and had a boss who hated me and stayed on my case and stressed me severely. The boss who hired me/prmoted me in that group got reorganized as a manager of a new group. She was promjoted as my new manager and hated me but could find little wrong with my work but constantly threatenend to GET ME so to speak. I was severely stressed and ending up quitting. My case seems so familiar to the comment posted on feb 18, 2011 by a michelle and it was to Heidy. I have been denied disability three times and when lost my last 8th job since quitting fedex early november 2010. It was the very last day that I could legally appeal my third denial which i did. I was terminhated from this last job due to a hospital admission of only three day;s came back to work got everything caught upa nd got fired. Shame on you, Ultimate Dental, Inc. IN memphis, tn.Michelle, please contact me at ricemichelle1969@yahoo.com. I need your advice on my case. Thank you so very much.

Comment from Samantha
Time: April 10, 2011, 4:11 pm

i was diagnosed with Chron’s in September and I’m 18. i never even heard of the disease before i thought it was just my appendix. I’ve tried a few medicines like asacol . my doctor told me to try others but there so expensive and i don’t have that kind of money. i also heard remicade can cause lymphoma so i don’t know if i want that risk. i thought about surgery and thought that would be the best but my chron’s is in the small ileum and it is said to be in one spot but the doctors are unsure and think it will mostly come back. any suggestions on what i should try??

Comment from Sophie WONGHEN
Time: April 22, 2011, 7:29 am

Hi all,

Just been reading all your posts, I too have Crohn’s, I was diagnosed when i was 22 years old. I am half Chinese, half French, back in HK it was not a known illness to the Oriental community and I had it. I was the 10th case they ever came across in the hospital. I think it came from my French side. I remember losing 2 stones in 2 weeks. Was bleeding a lot, couldnt eat, throwing up. I spent about a month in hospital on steroids bored out of my mind, eating pretty bad ‘congee’ rice soup that they make typically in Hong Kong, but I guess what got me through was my sense of humour, my youth back then and the eagerness to put this glitch behind me and move on. I was in remission for almost a decade with a few hiccups here and there, forced to do a check up every 2 years by my doc, all ok until I moved countries again. I think stress is a big factor on the symptoms, alcohol and high sugar consumption….. i recently bought a book by Jini Patel and I am working through it in the hopes that i wont have to rely on ASacol anymore. Not that i ever did until the Eresyma Nodosum lumpy crappy bruises came back on my legs. Not had that in 20 years and here they are again. Hate how this stupid illness is crippling me. Having read Jini’s book I am begining to understand how i survived all those years ago when i was first struck down. I refuse to let this illness define my life from now on as it didnt in the past. The daily cramps does eventually wear you down and break you down but having read this book has brought me back to my attitude towards this bullying illness. This is only on the first chapter….. hoping the rest of the book will kick my butt back to life again. Been told that i may have to go on remecade, but that it may affect me as a newly engaged wanna be mother one day…. i am trying to stay away from awful drugs as long as i can so i can fulfill my dream of being a mum one day….

Comment from Teresa Newberry
Time: April 27, 2011, 3:43 pm

I have lost one sister to Crohns. I have another sister who is walking the road of complications of Crohns now. She has a fistula that caused her to get septic. She also has ended up with a colostomy that she would prefer not to have. She is living in a nursing home at the age of 49 and wants to be out on her own with her children. The problem is the fistula is still there. I need to get some ideas of how to heal the fistula. So that she could possibly have her colostomy reversed. Any suggestions would be helpfiul.

Comment from Sharon
Time: May 23, 2011, 6:57 pm

My grandson found out in Jan that he has Crohns and Ulcerative colitis. He apparently has had this for many years. He is 10 years old. His condition has worsened and he is going to be put on Remicade. They are weaning him off the meds he is taking and the steroids. i am very concerned about the IV treatments but I realize he is so sick and the dr has to do what he feels best. I appreciate this site. He has never been a good eater and has never been very big. He barely weighs over 60 lbs. now. I will check back often in case someone else has experience with the Remicade IV’s. Thank you.

Comment from samantha
Time: June 1, 2011, 3:55 am

I have been battling with crohns since march 2010 and thank God I am becoming more educated on diet and natural cures for crohns. Read “Patient Heal Thyself” change your diet eat all organic, take probiotics, stop eating and drinking dairy, drink tea chamomile, licorice root, ginger, and peppermint, cod liver oil, coconut oil, and lots of omega 3′s in eggs, fish ect, and stick to a gluten free diet. My doctor wants me to go on humira but I want to HEAL myself from this disease not SUPRESS it with medication. Thank God I am feeling healthier than ever still battling crohns but i can feel i am healing internally :) Get informed and look for alternatives God Bless!!

Comment from Felicity
Time: June 28, 2011, 4:29 am

I’ve been diagnosed with Chron’s when I was 14 years old accidentally when I was rushed for an appendix surgery. I was briefly on Asacol, but chose not to take it as I felt like it worsened my symptoms. My infection is from the start of the small intestine, I’m 29 years old now, have 2 lovely children and have lived a close to normal life (maybe I just got used to the pain) However, I haven’t been looking after my disease as properly as I should, I basically ignored it for 10 years. Now after the push of my over concerned parents I made the step to see a doctor for a check up. I went for the usual, Stool testing (yes blood was found), Colonscopy – which by the way was one of the most terrible experiences of my life, they took around 10 biopsies which i could feel, my insides are pretty sensitive to “stretching”. I will be going for a MRI to see the extent of my chron’s, as the valve that seperates my small from my large intestine has almost grown shut, only 1.4mm wide! I’m due for an operation to remove/replace that area, fingers crossed that my once “normal” live won’t turned upside down. Well, just thought I’ll enter my bit… :) I’ll see what happens after my surgery, I hope however that it doesn’t go from ok to absolute worst like for some ppl I’ve read in this blog… :S

Comment from Sibyl Pinnock
Time: August 12, 2011, 12:32 am

I’VE BEEN LIVING WITH CROHNS DISEASE FOR 16 YEARS NOW. FIRST I WAS DIAGNOSED WITH
UC AND GOT MY FIRST SURGERY FOR A TOTAL COLECTOMY PLUS A JPOUCH PLACED,THIS DISEASE IS SUCH A PAIN SOMETIMES I AM SO DEPRESS HARDLY GOES ANYWHERE BUT I’M STAYING STRONG. OVER THE YEARS I’VE GOTTEN OVER 12 SURGERIES RESECTION,ILEOSTOMY BAGS,HERNIA REPAIRS FISTULA REPAIR YOU NAME IT I HAVE GOT IT DONE TO ME. AT THIS MOMENT I THINK I AM IN REMISSION. I PRAY EVERY DAY FOR THE LORD TO GIVE ME HEALTH AND STRENGHT TO GO ON,EVEN WHEN I ATE ANYTHING IT RUNS RIGHT THROUGH MY BODY. RIGHT NOW I AM NOT ON ANY MEDICATION I AM ASKING WHAT IS THE BEST MEDICINE I CAN TAKE AND A GOOD DIET TO GO ON,I AM SO GLAD I SAW THE ADS FOR THIS SITE THANKS AGAIN FOR ANY INFORMATION I CAN GET.

Comment from Lux Osman
Time: August 30, 2011, 1:43 am

Hi all,

I am a nursing student writing an essay on the patient experiences of living with a chronic condition. I have always imagined living with Crohn’s would a difficult thing, but I had no idea what a consuming disease crohn’s is, untll I came across this website and read all your comments. I salute your strenght and determination in trying to leave as normal a life as one can with this terrible condition. You are all very strong people. I really hope they find a cure one day soon.

Comment from shauntay
Time: September 9, 2011, 6:08 am

I’ve been living with crohns for six years they diagnosed me in august of 2010. I have had one sugery because I got an abcess in my rectum that was very painful. The disease is kind of embarassing it is also depressing I lost my job due to my illness it has been very hard deaaling with the symtoms and trying to afford the medications. I had to sign up for disability that’s been a headache too I pray that ev erything goes well I thank god for this website to share my story and to know I’m not alone in this!

Comment from Laura
Time: September 22, 2011, 12:23 pm

My boyfriend has Crohns and this site is so helpful in helping me understand the disease. Thank you so much!

Comment from Ja’Requs Randolph
Time: September 29, 2011, 5:14 am

I was diagnosed with Crohn’s Sept. of 2009 (2 yrs. ago). Shortly after I graduated from high school, so ironic! It was hard for at first, so many doctor visits, different procedures, tests to determine what was going on, Endoscopy, and two Colonscopy. For me, I cope better with the Fall and Spring seasons of the year. Summer is not my best. It’s been rally rough and a up hill journey since diagnosis, but I try to have a postive aspect about it, stay strong in my faith, and thank God daily for medication options. However, there is no cure just yet! As for me, eating dinner/supper before 6:30 every evening seems to help relieve pain and is better to
manage too!

Comment from Courtney
Time: October 23, 2011, 1:59 am

I was diagnosed with crohn’s at the end of June this year. I was hurting for two months prior and the doctor didn’t know what was causing my pain. at first it was said acid reflux and i had a colonoscopy and endoscopy done and nothing was shown and had an ultrasound. one morning i woke up hurting so bad on my right side and running a fever so i went to the er and they did a ct with contrast and it showed the narrowing in my small bowel at the illium with a start of an abcess. I stayed in the hospital for 3 days receiving antibotics, when i left made an appt with my GI and had a barium xray done and blood test to confirm my crohns. I have some good days, but more bad then good. I have never had a problem except when i was first diagnosed with diarreah, so im pretty normal in that area and usually only go once a day now. I do have stomach pain daily, mostly due to what i choose to eat, which ive been trying to get on a certain diet, but it is hard. I take pentase 3000 mg. daily and pain pills as needed, which is usually one a day. my joints hurt daily, usually in my back, legs and hips. my skin doesnt feel as smooth as it use to and my hair is thinner due to my medicine. I just want to feel normal again ;)

Comment from Sandy
Time: October 26, 2011, 2:55 am

Hello all. It is amazing how many people are struck with this disease. I have had symptoms for about 22 years, but after multiple dr’s looked at me, was never diagnosed. I was diagnosed in 2009 when I went in for a colonoscopy and was hospitalized immediately. I had perferrated diverticulitus, just about to blow through the wall of my colon and a severly diseased colon. The symtoms were swelling mostly in my knees and severe stomach cramping and very frequent trips to the restroom. I did not always feel bad or have joint problems, it would come and go. So now, I have a very small portion of my colon and I am on Humira to keep my symptoms under control. I still have some bad days and get very tired, still working full time, but overall, outside of having to carefully monitor my fluid intake, have a pretty busy life with minimal episodes. I do have to use immodium as I dehydrate quickly if things get crazy with with trips to the restroom. Overall, I never really got colds, flus or the like, but when this has me, it takes me down. I did have a colostomy bag for about 60 days after my surgery, but was fortunate enough to be able to be put back together. I have fabulous doctors. My Dr is monitoring me closely and calls me back if I call in to determine personally how he thinks I am doing. I so appreciate that extra step. As bad as my condition, I feel that despite all the challenges, overall, if I pay close attention, I can minimize the discomfort and difficulties. My determination is to rest when I need it and to avoid as much as possible the items that irritate my condition. Not a choice I would make, but glad I survived to move forward with a life with my husband and children. The suffering can be immense, but if you pay attention to your body, take care of yourself and keep a very positive attitude, you can live with this disease.

Comment from Bec
Time: October 31, 2011, 1:44 am

I am 23 years old and have been living with crohns the last 9 years. i am now having injections to try and control the disease. The doctors however are telling me the next step is having a bag. Can anyone suggest any other options or even natural medicines that have helped them to control there crohns. As you can imagine being 23 and looking at having a bag is a scary option.

Comment from Tammy
Time: November 1, 2011, 1:00 am

I was diagnosed with crohns after three longs years of suffering with extreme pain and weight loss at the age of 22. Lost over 50lbs – Went from 125 lbs – 75lbs height of 5’1. Not a pretty sight. Finally had sugery removed half my large intestine and 6 feet of my small intestine that connected from my large. Surgically put me into remission for 15 years!! Than the narrowing came and constiaption and the BOWEL OBSTRUCTION!!! I was hospital for about a week and put back on meds. Did that for a year, than felt good, went off again. 3 years later here I am severely anemic on iron pills and pain like the old days and cant see my specialist for another 4 months!!! SOOOOO tired and fatigue can barely make it through the day! Hurts to eat and I all want to do is sleep. Anyone else severely fatigued with Crohns?

Comment from amanda
Time: November 2, 2011, 11:22 am

hi does any1 still use this web site……my partner suffered with ulcers when he was a teenager at the age of 18/19 he had an op to have it removed and they took half his stomach away…he is now 41…..all his life he has suffered with some form of pain in his stomach and he learnt to avoid fryed foods….we also know alot of stress kicks his pain in aswell…..recently he has been stressed with work and his stomach has been kickin off and out gp stated she wanted it investigated as the ulcer may have returned…..but while waiting for hos appointment just over a week ago i had to get him to A&E as he was in alot of pain….now the dr’s are sayin it looks like he has chrons diease was kept in for a week put on antibiotics then came home on friday with meds to contiune now he is waiting for appointment to have camera in and a biopsy done……my thoughts is he has had this all along as i read somewhere it can lay undetected for 20 yrs or more untill it flares up…..any help and advice would be much appreciated….like what foods to avoid and is there anythin he could take when his stomach does flare up he was in pain last night first pain he has had since he went into the hospital….i feel so guilty like its what i cooked for tea that set it off and i dont know what to do…..i have only been living with this for like 2 nearly 3 yrs where he has had it all his life…..so pls any help would be very much appreciated…………

Comment from serkan
Time: November 15, 2011, 7:53 pm

Hi hope you all here still,i have disgnosed with chrohns disease in 2009.my small bowel was affected,since then i have been on asacol 400 mg tablats.its been about a month now that im getting severe bloating conttipation and nausea.i have been to my specialis and he changed my tablets to pentasa 500 mg.but seems like im the same.in my condition i shoudnt get constipation.it should just be diareaa.hope you all well….

Comment from Kim
Time: November 22, 2011, 3:37 am

Hi my name is Kim. I was diagnosed with Ulcertive proctitis 3 months ago. Colonoscopy confirmed. My symptoms have become worse. Dr had me doing suppositories and because of going to the bathroom so much the swelling is severe. Dr has switched me to a enema which doesn’t stay in to long. I’m in the bathroom at least 15 times a day with lots of blood and clots. As soon as I’m done eating I’m running for the bathroom and there has been a few times where I haven’t made it. When I have accidents I feel total helpless and find myself in tears alot. Reading all of the other comments I’m starting to wonder if I was diagnosed wrong. Could it be Crohns ? Should I get a second opinon ? Please help !!!

Comment from Tyeshia pleas
Time: November 29, 2011, 4:32 am

I have crohns and I only had it for like three years and I am only 20yrs old tryin t lo see how I deal with the pain the throwin up but I never have to make alot of bowel movements it be gard for me to go

Comment from paul
Time: November 30, 2011, 10:09 pm

hello,
I have just been diagnosed with crohns disease. No pain at the moment . Have lost some weight.
any ideas anyone?

Comment from Bri
Time: December 1, 2011, 3:50 am

Im 13 and i just got diagnosed with this about 2 months ago and i thought that no one had it and i was alone but reading everyones comments it made me feel better and ok. I have really bad paing like everyday and it sucks abd j can handle pain real well and i tell people im doing ok but then they can always see im not by my face. anytime i eat my stomach hurts SO BAD and so sometimes i wont even really eat because of it and i am anemic low on iron because when this started i didnt eat at all for a while more than a week but i always tryed to force my self to eat. My family is there for me and so is my boyfriend they alway make sure that what they eat fits my diet and stuff like that and it makes me feel happy that everyone in my family would give up stuff just for me! When i do activities mynstomach gets in alot of pain witch sucks cause i LOVE sporta and activities im an active girl! I still have hospital visits to and alot of blood drawn! I HAVE LARGE INTESTINE AND SMALL INTESTINE AND ITS ALSO IN MY COLON! My brother always try to make the best of it with me and makes me laugh about it so i forget the pain sometimes and he jokes about how my IMmune system works to well and it makes me feel better! Always SMILE and LAUGH and have a good time and THINK POSITIVE thats what i do!

Comment from anecke
Time: December 1, 2011, 9:07 pm

Do you guys think I have that disease cause every time when I want to eat u get nusia and I ondrink water for dinner I had one smaal fruit and treu the day I only drink water what is wrong with me :(

Comment from miranda
Time: December 14, 2011, 5:11 pm

I’m a 19 year old teen mother of a 15 month old baby girl I have been haven symptoms
And tomorrow I go to the doctor to see if I have crohns disease. Can anyone give me a heads up on
How they see if you have this like what all test do u have to do etc
Thanks everyone and god bless you all ::))

Comment from josephine
Time: December 17, 2011, 6:29 am

HI, I am a 56 year old ,was diagnosed with crohns 2 years ago.,it was discovered after a stay in hospital with a diverticulitis attack.It totally shocked me,yes i knew i was always in pain with diarhea and rushing to go to the toilet.I always suspected that i had food intolerences.So i have been on a special diet for as long as i can remember .Rice ,meat vegetables ,fruit.lEvery meal had to be prepared by me. as i noticed that i was also having very bad reactions to preservatives in foods in prepackaged foods, certain fish ,would give me the worst headache, vomiting ,diarhea ,it took a few days to recover.I was put on Salofalk ,i did have some bad side effects ,but my specialist insisted i continue i on.I also have thyroid nodules and that stoped funtioning properly ,after 12 months my symptoms became so bad I was rushed to hospital with worst pain in my abdomen i have ever experienced.I was in shock .but my doctor insisted i continure on with Solofalk.After that stange things happened .My face was so swollen i could not swallow or chew.Strange enough every night for a few weels i would wake up unable to swollow my water ,but did not realise the danger I was in ANGIODEMA.I was allergic to the medication ,so i was told to keep on taking it NOT ALLOWED TO STOP MY MEDICATION UNDER NO CIRCUMSTANCES>I was put on predisolone to get the swelling down,and was told i was lucky to be alive.After my month on predisolone as i stopped it ,within 2 days it started again with my sweeling of my face tongue.so i was back on it. Well I decided to stop all medications and do it alone .YEs i was sick for a while my lower back and front were bad ,iwas very tired but i persevered,That was a year ago .I had my special test to check my small bowel ,cat scan ,colonscopy Yes i Have Crohns but my new specialist is amased how well i am keeping.I feel great ,i am full of energy ,i eat well Rice,veg,meat no spices pepper vinegar when we go out chose very carefully .pick the simplest foods ANd yes i have put on 8 kg.but who cares .And yes i did not return to first specialist .I told myGP clearly why .By the way my briother has crohns as well .so i do think it is genetic.He had surgery to remove part of his bowel ,but is doing great .please lets take care of ourselves

Comment from D.E.
Time: December 17, 2011, 8:06 am

Im in love with someone with Chrohns so I’m just doing research about it. It really doesn’t bother me at all, except it makes me kinda sad

Comment from Dee
Time: December 22, 2011, 6:44 pm

I would love to know how I got crohns. I went into hospital March ’08 for laporoscipic day surgery for endometriosis and endometritis and actually wound up spending 10 days in hospital as a result of sudden onset of gastro problems. When i finally managed to get the lovely “colonoscopy” it was revealed that I had cholitis and crohns… I now live my life wondering where the closest bathroom is. They moved everyone on my floor at work, except me as where they moved my group was about as far from the bathroom as you can get…I feel alienated from my team at work and embarrassed to explain why I didn’t move with them. If anyone knows of a cholitis or crohns chat forum, please let me know…
Dfetzko@gmail. Com

Comment from Allison Kutz
Time: January 3, 2012, 8:30 pm

I’m 24 and have been living with crohns for 6 years. I had part of my small intestines and appendix taken out 3 years ago. I also have a few bowel obstructions after. Before my surgery my crohns was soo bad I was on didn’t inflamatory meds, high dosages of steriods, pain meds. I went from the wieght of 90 pounds before I was diagnosed with crohns rite before I went to collage, and in a years time, gained 40 pounds. All I could eat was unhealthy. To the point that almost everything gave me pain and before my surgery in 2008, I was 79 pounds. The surgery worked and I was in remission for about a year. I started to have a few flare ups last year, and Now I deff am lack tose intollerant. Rite now, I’m going to be getting scoped and x rayed this week. I’ve been having problems with throwing up after eating. Never throw up from my crohns before, it was always diarrea and pain. I also have little bit of pains in my stomach. I keep going from constipated to some diarria. My digestive system just seems not to be working correctly. I’m not sure what wrong, but hope to fine the answer soon. I am an duel elementry and special eduaction major and will be student teaching in 3 weeks. I’m a little scared. I’ve have also been in a serious relationship for about a year and a half, but untill recently my boyfriend is a unsure of our relationship due to me not handling my crohns all the time in the correct mannor. I’m mostly a extremely postive person, but at time my issures can get to me, and I shut down for a very short period. THis is something i’m seeking counsiling to learn to cope with things. I love him very much, but sadly, can not worry about our relationship and with myself and the end of my schooling. I’ve been in school for 6 years. First as a nuring major, and then transfered a few times and went into elemtry special education. I have completed everything till now with honors but I am scared out of my mind I’m not going to finish out. THis is my first time i’ve wriiten all of this. if anyone would like to comment, I would appriciate the feedback on anything.

Comment from janice
Time: January 9, 2012, 12:35 am

i `ve been living with Crohns Disease for 33 years now. i have had 2 surgeries 1 in the 90`s . And 1 Dec. 15 2o11. I have a fistulla . I HAVE 2 BAGS 1 FOR THE FISTULA AND 1 for my ileostomy. I am 110 lb. I had 10 fistula befor sugery I PRAY A LOT AND I LOVE THE LORD!

Comment from brandon
Time: January 13, 2012, 8:16 pm

I have had Crohns for 3 years and it sucks bad. I randomly get flare ups and they really bring me down. I have no health insurance and haven’t even since I first was diagnosed. I have figured out that exercise is the best thing for me. I wieght lift and exercise daily and it helps me maintain a healthy weight and really helps with dealing with stress and even the pain and discomfort. I swear by this and eating healthy as u can while being on a daily exercise routine really keeps my flare ups dormant and when I do have a flare up itsy much easier to deal with through exercise. I also smoke marijuana and out of all the meds I’ve takin it seems to help soothe the discomfort immediately and helps me when I have a loss in appetite. I hope maybe this can help some people and if this does work for u then u will at least be more confident and in great shape. Crohns disease is terrible but not impossible as it seems to be. Stay positive and try anything you can to keep yourself healthy and keep your Crohns under control.

Comment from Nadine Davis
Time: January 18, 2012, 2:34 pm

I am 24 yr. Old woman…i was diagnosed with crohns when I was 15 years
Old…I can relate to everyones symptoms here. The diarrhea, nausea, vomitting,
Weight loss, prednisone treatment etc…I started Remicade in feb 2011…
I cant say its working for me as I hear it does others. I think maybe its
Still early to tell. Next month will make a year Ive been on it. In addition
Im on prednisone 10mg a day. Also I changed my diet completely. For
Many of you looking what to eat…look up Dr. D’Adamo…his book called
Ear Right For Your Blood Type…its great!!! Really works!!! I am also doing
Canasa, a rectal suppository, its a tan bullet shaped thingy you put in your
Rectum at night to rid the inflammation in the rectum. So far, so good.
As people with crohns know getting a flu, or a cold triggers symptoms, which
I have now and its hard because tylenol, advil, motrin, aleve and IBprofin
All make crohns worse….also for women, menstrual periods makes
Crohns act up as well. You just cant win. But Im hoping Remicade will
Work over time…I really need a miracle. It sucks I just met a great guy who
I really like and Im afraid to continue with him because of my condition
How do I tell him???

Comment from chris
Time: January 18, 2012, 8:34 pm

I was diagnosed with crohns at the age of 19 i’m now 23. My father also has crohns but wasn’t diagnosed until the age of 25. The last 4 years i’ve been through some good spells but the bad times seem to last longer and are more frequent. I’ve basically had almost every type of medication starting at first on pentasa and azaphoiprine. This didn’t help one bit so was then moved onto prednisolone. The first few courses of steroids really worked well but of course you can’t stay on them for too long. I was then moved onto infliximab and this was the best medication i’ve had until i had a serious reaction at my last infusion. My father also has infliximab but luckily has had no reactions but i have read that reactions are more likely to happen in younger people.

Now i’m seeing my consultant on monday and he’s going to try me on something similar to infliximab but you inject it yourself every two weeks. I’m just hoping after 4 years of struggling i can finally get myself into remission for a long period of time.

I can honestly say after suffering with this myself it is a very stressful illness. Make the most of the time when you feel well because you never know when the next flare up is coming. They still don’t know that much about crohns disease so at least that gives me hope that one day a cure will be found.

Control your crohns don’t let it control you :)

Comment from Trent
Time: January 23, 2012, 1:54 am

I was diagnosed in June 2011 and my diagnosis came from a rupture in my all intestines. I was very ill and required an emergency resection. I spent 14 days in the hospital. I consider myself fortunate, because my surgeon is awesome. He removed 22 inches of small intestines. In November he completed the take down and reconnected my intestines. He referred me to a GI doctor who has started 6-MP medication. When this all happened it was the scariest thing I have had to face. It amazes me the medical world does not have a better handle on treatment for Crohn’s, but I have learned it’s not the only disease the medical world has no answer for. I lost 25 pounds. I am blessed to be in remission right now and for theist part life is pretty normal. Some foods bother me, but so far the list is short. I’m taking supplements D-3, Fish oil w/3-6-9, flax oil and borage oil. I have also started Align Probiotics. I do not plan to give up and search daily for things which are working for other people. My GI doctor is not a believer of alternative medicine and that is his choice. I’m reading a book “The Makers Diet” and the author success is amazing. My life was full of stress and I was unsure how to undo the stress factor. I believe in Jesus Christ and turned to Him. Turning to Him forced me to evaluate who I had put my trust in. The answer was me. I’m finding and growing to put my life and day to day stuff over to Him. Everything I do including medications or supplements I pray about it before I start taking anything. What the doctors don’t know He knows. I don’t know what my future with Crohn’s is? I know He knows what’s best and will guide my steps today and in the future. God is good and loves us all greatly and His purpose is not for us to be sick, but He walks with each us if we invite Him along the journey. There is a lot of suggestions and idea’s on the Internet, it became very confusing and destructive for me. I still read and am open to what works for other people. But, I will not start anything without asking Him first. My life is in His hands and I am learning to trust Him more and rest I’m the truth He is the greatest healer of all. I understand this approach doesn’t work for everyone, but it is available to everyone. Prayer is powerful and God is good. I hope everyone with Crohn’s find peace and live their life to the fullest. If you believe in the power of prayer and need someone to pray for you drop me an email and I would consider it my privilege to pray for you. God Bless you all and may you find peace and rest in Him.

Comment from Megan
Time: January 24, 2012, 2:21 am

Im 17 and Ive had crohn’s disease for 5 years now, most stressful thing i have ever dealt with in my life. (not that helps me any lol) i have been on Humira for the past 2 years, and has helped me the best, but they are very painful, but hopefully in remission..

Comment from Deixter
Time: January 24, 2012, 7:46 pm

Hi. My name is Deixter. I want all the help you can give me because I am new at this. My husband was diagnosed with ulcerative colitis in 1999. Now in July of 2011 was discovered that it was Chrons disease. Right now he is in the hospital because it got complicated with “piderma gangrenoso” that is the name in spanish i dont know how it is called in english because we live in Puerto Rico.
He is desperate, because we have 2 children and he tells me that he can’t play with them. Right now he began 2 months ago with HUMIRA. Please help us. We are desperate. Thanks, Deixter.

Comment from rox
Time: January 28, 2012, 10:18 pm

hi im worried my 2 year old daughter has crohns and i am recently been tested,she complains about tummy pain and has this since been very tiny,she has black sloppy poo very often,also her stomache is flat on a morning when she wakes but as the day goes on you can watch it go through the stages of bloating by the time bedtime comes she looks like someone has pumped her tummy up with a pump,do you have any suggestions x

Comment from Sarah
Time: January 31, 2012, 10:54 am

I have had the rotten disease for 18 years it is like living with a life sentence! Not ever getting any relief from it and been medically retired unfit to work in your 30′s!! Even after 17 years only yesterday I had a stent placed in the small bowel for am obstruction but knowing my luck it will not work and I will be back in surgery soon ;(( that aside I also have ongoing fistula problems , god knows if I was a horse I would have been shot!!

Comment from Sara
Time: February 2, 2012, 7:06 am

Hi .. I have been diagnosed with Crohns Disease from 2006 i was 16 years old .. i was on pentasa pills and imuran and thank god became well .. but i have stopped my medication for 1 year in 2007 – 2008 due to a doctor who told me that i can eventually stop my medication .. i collapesd back again in 2009 were i did a endoscopy and the dr found out that i have got a stricture of 10cm in the end of my small intenstine .. my dr told me since you got a stricture that mean you have entered the sever stage i am back on my medications pentasa sachets and imuran .. but due to the stricture my dr wants me to start REMICADE .. the problem is i want to get pregnant soon but i heard that i cant remicade if i want to get pregnant or if i am pregnant .. can anyone with experience help me ? and if i have crohns is it hard when your pregnant ?

Comment from K DUGAS
Time: February 23, 2012, 12:55 pm

I was recently diagnosed with crohns a few months ago and tried to just deny it was true.I thought the doctor was wrong but I’ve been having trouble for years and was told it was a nervous stomach or IBS.I refused to believe it until I had a second bad attach with SEVERE PAIN and very bloody diarrhea for the second time in the last few months.I see that my food choices will be very limited as I’m used to.I will have to give up by favorite liquid {MILK} I drink milk with everything ever since I was a kid and got it warm out of the cow.I don’t know much more I will have to change but it looks like a somewhat drastic change for me but I am determined to live well and healthy for the rest of my life and this will be hard but it looks do able but difficult. If I am wrong about drinking {SKIM COWS MILK PLEASE CORRECT ME}.This seams to be the most difficult aspect of the diet for me but as the old saying goes”WHAT DOESN’T KILL ME MAKES ME STRONGER” I just hope I can get back to a some what NORMAL life,but I REFUSE TO LET THIS GET ME DOWN.I have several other diseases like sever clinical depression and degenerative disc disease in the spine and migraine headaches but I refuse to give in or give up there’s always a way even with the good days and the bad.So far I haven’t talked to my doctor about surgeries and might not need it {HOPING} but he hasn’t said anything about that.I just want to be as normal as I can and live my life to the fullest what ever that might bring.It’s hard to keep a positive outlook but I will continue to try to the end.

Comment from darius elliott
Time: February 29, 2012, 7:37 am

what are some symptoms you have had during chrons? I feel like I may have it i’ve been back and fourth to the hospital and they say its gastritis but I dont think so i’ve gotten an xray on my chest and stomach they found nothing and the test where they see babies on I forgot but I just want some feedback

Comment from tevin randle
Time: March 17, 2012, 8:09 pm

Hey my mom has crohn disease and I need someone that she can relat to.

Comment from Barrett
Time: March 31, 2012, 2:28 am

I am 47 years old and was diagnosed with Crohn’s disease 22 years ago, but suffered with the disease since about age 8. I don’t remember what life was like without it. I have read through alot of the posts on this site and am very dissappointed. In order to conquer this disease you have to fight. Sounds like alot of you would rather have a pitty party than to figure out how to fight it. I can only speak from my personal experience with the disease, but I believe that if you fight, you win. Most of the people I know who have the most trouble are those who either give in and lose hope, or those who just have so little self control that they can’t stop eating foods that cause flairs. For the last 12 years I have managed my disease by watching what and when I eat. I have always maintained a full time job and taken care of my three sons. When I am working I eat once every 24 hours. I avoid fruits, vegetables, nuts, and whole grains. I have not taken medicine for 12 years. I refuse to consider myself disabled, and I refuse to allow the disease to control my life. I suggest that some of you need to take back control.

Comment from angela
Time: April 7, 2012, 8:55 pm

I was diagnosed with crohns when i was 15 i am now 19 and have had several period of remissions, it can be so depressing at times because i feel like i have no one to really know what i am going through. It sucks to have to always know a nearby bathroom when you might eat something that will upset my stomach i find that spicy foods do the worst damage along with caffine so i do my best to stay away from those things i am on medication but it doesnt always work and i do not want it to get any worse because i hate having it already. It is a nuisance and i feel like i am too young to have to deal with something like this i am glad i can go on these types of sites and see other people that can relate because i feel like the only person i can talk to about it who will understand is my doctor

Comment from Tash
Time: April 8, 2012, 10:31 am

I was diagnosed 12 months ago and I’m still not dealing with it!!

Comment from Michelle
Time: April 11, 2012, 1:11 am

Hi I am a mom of 5 boys and I tell ya when one of your children come crawling across the floor in pain cant walk all of a sudden and obviously suffered from other things to lead to this he wasn’t willing to discuss at the time.One of my boys this happened to about 3 years ago now and the pain was in his groin area and he had went to doc after doc specialist after specialist and finally one test shown that it was most likely crohn’s disease.Meantime one doctor had told us to hang in there he was a bone cancer specialist and said he has seen people sick or hurt in one area of the body when in fact that area was not the problem it could be coming from a different part of your body.This was my sons case after that a test was done besides blood tests and guessing and it showed a bad spot where his small intestines meet the large intestines and the situation became clearer they needed to do an upper and lower gi to end the guessing game and it confirmed he had crohn’s disease.Now he suffered thru meds that did’nt work for over a year until we finally switched doctors and he done another upper and lower gi to see his disease had gotten way worse.devistating to him and us as you can imagine and this new doctor introduced us to remicade.my son and it brang tears to my eyes looked the doc in the eyes after a treatment or 2 and told him it is the best he has fealt since 5th grade and he was in 7th grade by then.now tho he is suffering again because his body has had reaction to remicade scary stuff but the doc has now added methotrexate once a week and zofran to help with side effects of that and a folic acid every day.my son is now almost done with 8th grade he is 14 years old i wish they could find a cure so he dont have to suffer through all of this and docs say he is not candidate for suregery due to the spot his crohn’s is in.i feel for and understand everyone going thru this disease or any and their families my prayers are with you all and prayers to someone to find cures out there. it hurts to see anyone going through this especially your own child.all that plus his sickness to go wwith all docs appointments and all medications its alot for any1 especially a child!

Comment from jccone
Time: April 12, 2012, 6:03 pm

Does anyone care to share their experience when treated with Remicade? Specifically, how effective was it, and what the process was like?

Comment from Rachel Burrows
Time: April 14, 2012, 4:42 pm

I’ve had crohns for about six years, and I am now 17. I still find it hard to accept that i have crohns, and i think that this is mostly because of the nature of the disease, and i feel that people will not want to know about it. It is really only family members that know about it and they have all been very supportive. I have told a couple of friends but i don’t think that they really understand what having crohns entails; tablets everyday, having a gastrostomy tube, had an N.G. tube in 2007 (just as i started secondary school), and numerous endoscopies and colonoscopies. I would really appreciate it if someone (similar age if possible) would be able to get in conact with me via this website as i would like to be able to talk to someone who is going through the same thing xxx

Comment from Scott Lyke
Time: April 15, 2012, 3:43 pm

I too have chron’s colititis,diagnosed back in Sept of 2005 I have been living with problem’s helth wise off-n-on since then,Basal cell carseanova below my left eye stomach upseet off-n-on,Pnemonia,sloly deteriating eye sight,weight gain,charlie horses in my leg’s and now most recently they have found that I have a Celiac artery anneurysm current moment /the last I knew it was@ a 1.7,I got off of remicade back last october when I got my Pneumonia,because of my immune system being out of wack,I also have developed a gaglon cyst’s on each elbow too I am considering applying for ssi but am hesitant if I am a candiate to receive benfit’s to the point of my recent health issues if this is the beginning of more problem’s for me,??

Comment from naomi
Time: April 19, 2012, 4:09 pm

i have crohns and i am only 12 years old it sucks

Comment from dr tom
Time: May 9, 2012, 2:12 pm

i am a 46 yo psychiatrist who has had crohn’s since age 12. i’ve had two resections (in ’87 and ’95). to quote our former president, bill clinton, i truly feel your pain. this illness has cost me multiple jobs due to absenteeism. this despite the fact that i’m very good at what i do. i’ve experienced almost all the issues you’ve suffered: diarrhea that makes you HAVE to know where the closest commode is; lack of sympathy from sources you wouldn’t imagine (my mother just thinks i’m a screw up as i’ve been let go from a number of jobs); embarrassingly foul smellling stool; leading a hermitic life due to the aforementioned risk of lightning quick diarrhea; excruciating pain; fatigue; and a general feeling of demoralization. one tip for diarrhea: take high dose imodium and prescription bentyl (phenomenal for short term bowel cramping pain) and THEN eating. it is important to have a good rapport with a good gastroenterologist you trust and sense is sympathetic. i was appalled by hearing of the gi doc who refused treating her because of the complexity of her illness. SHAME ON HIM! in instances like this you should write your state medical board. he won’t lose his license but i assure you they WILL investigate and scare him.

may god bless all of you who have to fight this disease day in and day out.

Comment from Pam Faust
Time: May 16, 2012, 12:44 am

I was diagnosed with crohn’s in 2000, after an emergency surgery. I had intestinal complications since the mid 90′s. I have had 2 bowel resections, a total hysterectomy, and an appendectomy all due to crohn’s. I am in a flare every day of my life. I “go” 15-40 times a day. I was a medical professional for many years prior to surgery. I was left unable to work, and unable to be anywhere where there isn’t a bathroom available. I do not get out much. I have developed a host of medical conditions since my diagnosis.I would love to e-mail with others who have this horrible disease. If you e-mail me, please put crohn’s in subject box, or I will delete it without reading it ( pjsplace2be@yahoo.com). Thanks and best wishes my fellow sufferers.

Comment from kathleen
Time: August 4, 2012, 2:35 am

I have had this for thirty years have had fissulas with it 32 surgeries for the fisstulas and three major surgeries and osomy bag that had to be changed from one side to the other i look like i’ve been put in a grinder had a hernia around the stoma . I was taking 120 ml of prednisone for twenty years and its caused my bones to deterierate. After getting my bag my fiance said things wouldnt change but they did he said i was no longer a woman , and that i would never be able to be with anyone else cause no one would want me . HE passed away seven years ago and i haven dated nor will i ,I hate the smell the constant worry about letting out in puplic bathrooms. stressed out in wisconsin

Comment from kathleen
Time: August 4, 2012, 2:44 am

crohns diease is so hard because if you dont have it no one can relate to you the constant throwing up and pain . I was throwing up for three months strait and the doctor said keep up the good work your loosing weight i had a blockage in my colon and the cause was due to active crohns.

Comment from anon
Time: August 10, 2012, 9:54 pm

hi ive had crohns for 6 years now it took the doctors 4yrs to diagnose in the mean time i was in so much pain and agony, i even made several trips to a and e but got told to see my gp, finally after surgery my symptoms have almost disappeared i am healthy with 2 daughters

Comment from moe watkins
Time: December 9, 2012, 1:57 pm

I have crohn’s and looking at hip surgery to remove some bone spurs etc. doc says worse recovery than hip replacement. i hobble as fast as i can to the bathroom now…… i guess i’ll have to wear depends……. any suggestions out there????

Comment from Brenda Jackson
Time: May 15, 2013, 1:55 am

I have Crohns and have been in remission for over 14 years. when I was hospitalized a dietician laid out a few rules (not a lot of fun, but they worked!!)
1. start with diet of rice and cooked carrots. (yummy) then add a small amount of something you feel is safe for you. If after three successive days you don’t have a bad reaction – the food is safe.
2. don’t EVER eat or drink anything with an
artificial sweetner (bye bye chewing gum and diet drinks). Don’t drink any juice from concentrate and don’t drink anything decaffinated.
So far it has worked for me. I don’t take any meds. I have no pain. Their are only about four foods I can’t eat (corn, yellow onions and beans – can’t remember the forth)
Even though the first few weeks after I got home were not much fun – in the long run following the rules paid off. I still have crohns but I don’t have any symptoms. The only reason I still say I have crohns is because I have been told it can’t be cured.

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