Living With Crohns Disease

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.