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 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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