• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

De-lurking

I've been reading here all week. What a great resource! It's good to know there's a place where people understand what you're talking about with this sucky disease. I was researching my medication when I stumbled in here, and I kept coming back.

I was diagnosed with Crohn's in the summer of 2008, when I had an emergency colon resection - it had perforated. I almost died. I had had "problems" for years - ever since 1986, when I had a serious case of food poisoning. It seemed to keep coming back. After all kinds of tests, changing doctors, more tests, no one could figure out why I still had bouts of cramps and diarrhea. The doctors decided that since everything was "normal," I was a mental case, and they wanted to send me to a psychiatrist. I stopped with the doctors and just tried to take care of it myself. I managed for 20 some years.

In Nov I had a routine colonoscopy, and was told I now have ulcerative colitis in addition to the Crohn's, and need medication. They put me on Asacol, but I couldn't tolerate it, so now I'm on Entocort, with no problems. I have virtually no symptoms as long as I'm careful what I eat. I have to take a lot of vitamins, which I understand is typical, and I take Welchol to control diarrhea.

I have a serious distrust of doctors and medications at this point, but I try to control it, since I don't want to get carted off in an ambulance again. I'm in my 60's, retired, and after reading many of the stories here, I know I am blessed to have lived most of my life without anything serious happening to me. I mean, I was really sick a few times, but I recovered on my own, and lived a normal life (with the help of daily doses of Imodium).

Now I see from reading other folks' stories and posts, my disease must be fairly mild. So far, I've been blessed.
 

AndiGirl

Your Story Forum Monitor
Hello and welcome to the forum. You are indeed very lucky to be able to manage with diet change. That must have been some case of food poisoning. This is a terrific forum to meet wonderful and supportive people, while also have your concerns and questions answers. Please make yourself at home.
 
Hi! How wonderful that you were able to deal with your disease in the manner you did. Good for you!
Andi is right; so many wonderful people on this forum with great information.
Poke around a bit, and stick around!
:welcome:
Michele
 
Thanks for the replies. The food poisoning was real - it was bacterial, and kind of rare. I took antibiotics for a while. Apparently from things I've read, Crohn's is often triggered by a bacterial infection. My interpretation was that the food poisoning "came back" because that's how it seemed to me.

About a year later, I had a fistula - my doctor referred me for surgery to have it repaired. My current GI says that they should have known then that it was Crohn's - that they were teaching it in medical schools in 1983 or 84, and apparently my doctor didn't keep up. I guess I was ignorant and happy. I now know I was having "flare ups" periodically, but I recovered every time with no repercussions except weight loss. I just knew there were a lot of things I couldn't eat.

I really knew something was wrong, but the doctors I saw just didn't listen, they blew it off. I figured that one day something would happen - and it did. I was relieved to know what it was, and happy that it wasn't worse.
 

AndiGirl

Your Story Forum Monitor
I hope you didn't think that I was being a smart alec when I mentioned the food poisoning. I understand completely. My mother was an RN and she saw lots of cases of horrible food poisoning. Sadly, some of the people even died. While growing up, my mother was very cautious while preparing food, and I do that with my family. Have fun browsing the forum.
 
I hope you didn't think that I was being a smart alec when I mentioned the food poisoning. I understand completely. My mother was an RN and she saw lots of cases of horrible food poisoning. Sadly, some of the people even died. While growing up, my mother was very cautious while preparing food, and I do that with my family. Have fun browsing the forum.
Not at all. It's just confusing to sort out the time frame, I think, and still keep the post short enough. I thought maybe I should clarify.

When I think about that food poisoning I still get angry. I ate at a restaurant with friends. We all got sick - but they were only sick for a day or two. I got desperately ill and it got worse over time - and apparently triggered my Crohn's.
 
hi and welcome, i'm glad you decided to de-lurk! :D

i just read your posts with great interest on a personal note - i have been pretty much ok digestion/stomach-wise for many years since extensive surgery for Crohn's, then got very ill all of a sudden one day around 10 weeks ago - was diagnosed with food poisoning. since then i've been ill ALL this time, very scared, very weak and debilitated, and just started perking up around a week ago. still waiting for more tests etc to determine what's going on... but your statement that food poisoning can trigger Crohn's, and it can bring on a lasting effect, really made sense to me - so thank you for that info.

i hope you continue to be in control of your condition, and i'm sorry you've been so let down by the medical profession. sadly, this scenario is all too common when it comes to Crohn's diagnosing... even these days i hear of stories where docs jump to 'mental' issues when in fact the patient is suffering with IBD. those days should be long gone by now!

looking forward to seeing you around the forum, i hope you like it here as much as we do :)
 
I've been reading here all week. What a great resource! It's good to know there's a place where people understand what you're talking about with this sucky disease. I was researching my medication when I stumbled in here, and I kept coming back.

I was diagnosed with Crohn's in the summer of 2008, when I had an emergency colon resection - it had perforated. I almost died. I had had "problems" for years - ever since 1986, when I had a serious case of food poisoning. It seemed to keep coming back. After all kinds of tests, changing doctors, more tests, no one could figure out why I still had bouts of cramps and diarrhea. The doctors decided that since everything was "normal," I was a mental case, and they wanted to send me to a psychiatrist.
Hi MissUnderestimated

We share a past history of Dr's who got it wrong which put us in serious trouble.All my complaints fell on deaf,arrogant ears which put me in the operating theatre so many times.
Some of them treated me like i was a mental case ~ i didn't fit in to their 'check list' of CD symptoms but many times i was in serious trouble.
Post-op some of them never even had the decency to apologise.
I'll never forgive them for what i went through ~ But now, after 21 years of being ill, i found the help i needed myself.
I now live in complete Remission from CD which they never got me anywhere near.

I wish you well
 
Hey Miss Underestimated

Just wanted to welcome you to the forum. It's a great place for info and support :)

Paula
x
 

ameslouise

Moderator
Hi Miss and welcome!

Great that you were able to manage so long on your own! Are you just on Entocort now and how long do you plan to be on it? While not as strong as pred, long term steroid use is still dangerous.

It is my understanding that one has either Crohn's OR Ulcerative Colitis, but not both. Many folks here have Crohn's Colitis, or Crohn's that is active in their colon and/or their small intestine. Is that what your doc meant? Sorry to question, but from my understanding you can't have both CD and UC.

Glad you decided to join us. There's lots of information and good advice here!

- Amy
 
Thanks for the welcome!

Amy - re the Crohn's or UC - I honestly don't know all of these things. After they did the emergency surgery (2008), they told me I definitely had Crohn's, and from what they saw, I had had it for a long time. After my first colonoscopy they said I had very mild inflammation - I wasn't put on any meds except Welchol.

When I had the recent colonoscopy, immediately afterward, the doctor who did it told me I had UC, and that I needed to be on medication.

So - I have no idea whether I had one or the other or both. It sounded like both to me, but I am often clueless about the details of what they're saying. I have read things that made me think that you can have both, but I will ask my doctor about that when I see him in May.
 
Welcome to the forum. I found a you tube video done by a pathologist. The difference between crohn's and ulcerative colitis has to do with were they find the granuloma's, if it is in all three layers of the intestine it is crohn's, if it is just the first two it's UC. (this is from memory ok, so I may have not described it exactly right) In any case the point is, unless they did a biopsy they can't really say which it is. I have crohn's in both my large and small intestine. Oh and I was once prescribed the book "the seven habits of highly effective people" because the doctor was sure I was just stressed out. lol!
 
Well, I don't know exactly - Maybe it depends on which doctor is talking to me. I know they do biopsies each time, and I'm sure they did one when I had surgery. I have the thickening of the bowel wall, granulomas and inflammation. The thickening and swelling caused the blockage that eventually perforated, causing the emergency. The docs said it could be in any part of my digestive system, that I could have joint pain and/or eventual macular degeneration; it could form fisutlas that might connect to other organs. Fortunately, most of these haven't happened yet.

This last colonoscopy, there were some granulomas and inflammation like before, and ulcers which I did not have before. The doc said the ulcers are near the site of the resection. That was in my lower right abdomen.

Interesting enough - I quit smoking a little over a year ago, because they were so insistent that it would make my Crohn's worse. Now they tell me I have UC. So much for taking care of myself, hahaha. I just read that smoking seems to protect against UC. Sigh.
 
There is a discussion from 2009 which sheds some light on the CD vs UC. > General IBD Discussion > difference between Crohn's Disease & Ulcerative Colitis

I can't link to it, the software thinks I'm linking to an outside site.
 
Well, quite a bit of time has passed since I posted this. I've had zero symptoms, and my last colonoscopy seemed to indicate that I had UC rather than the Crohn's original diagnosis. After several discussions and finally Prometheus tests, the definitive diagnosis was that I have the penetrating type of Crohns - what they had diagnosed to begin with.

My doctor wants to put me on Humira or Remicade, but I kind of stalled him on that decision. They scare me a lot. I'm still taking entocort until Nov. when I have another colonoscopy scheduled.

I just read that there is now a generic version of Entocort available in the US. I've been ordering mine from a pharmacy in the UK. Maybe now I can afford to buy it here.
 
Glad you are symptom free. It was explained to me that Humira and the biologicals can be used to try and decrease any damage, i.e scar tissue etc. Even though you don't feel symptoms, you are still having inflammation and that leads to damage. So that was the theory. Humira is fine for me and a lot of people. I hate to say don't be afraid because you know yourself better than I do. But a lot of the side affects are not very common. My doctor told me the TB precaution came from people who were carriers but not infected, once they took humira they got the disease, so now you have to be tested before you go on it, but the warning still remains. Good luck to you!
 

ameslouise

Moderator
Hi Miss - Glad to hear you have been symptom free for many months!

I, too, was very scared to go on Humira. I resisted for a long time. I ended up on it for about 6 months. I was too far gone for it to help, but I am happy to report that during that time I had ZERO side effects not as much as a sniffle! I was petrified because I am usually the Side Effect Queen - I get the stuff that is listed as occuring in .1% of patients! So even tho it didn't work for me, I was thrilled that it didn't affect me negatively either.

But only you can make that decision! Good luck - Amy
 
Thanks. Feedback is welcomed - especially about waiting too long - that makes me think harder. I guess I've just been through situations with family members, where the treatment was as bad as the disease, and if we had known the total outcome, we would have made a different decision.

My doctor is giving me some time - but he said the Prometheus tests also give him a projection of what will happen in my case, and it's not good. It's really easy for me to slip into denial because I have no symptoms now, I guess.

I've been looking for some stats for people my age, but most of what I find relates to younger people. I actually got sick when I was ~40, was diagnosed in 2008 when I was 63. It's the cancer that is scaring me.
 
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