What else don't I know about Crohn's?

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Veteran Member

Date Joined Dec 2010
Total Posts : 2819
   Posted 1/14/2018 5:38 PM (GMT -6)   
This current flare up has made me start questioning my knowledge about Crohn's. Over 11 years, I have read a lot about Crohn's in addition to the invaluable information I gained from this forum. Last month, I asked my GI about a support group that he was establishing in my country and he said it's still in process. He suggested I give advice to other patients on Facebook groups which I have already been doing for years. For other patients, I seem knowledgeable.

This has been true, at least for myself, until I flared up suddenly last Thursday. On Tuesday, I saw my GI and we started talking about the possibility of going into remission. When I started to have the sudden excruciating pain, vomiting and nausea on Thursday, I got worried and texted my GI. He asked whether I had either constipation or diarrhea. When I replied in negation, he said take an antispasmodic + celebrex and wait for a day or two. He could figure out what was wrong. He knew like what you told me that it's simply Crohn's acting up. That was obvious when I saw him yesterday. He wasn't alarmed and said words that were then shocking for me: it's inflammation of your colon, this is normal, expected and will recur. Tbh, I wanted to cry but of course, I didn't. I asked him
what about Remicade, why should I flare up and he said this is an inflammation which the rifaximin round should control. I felt that I was very naïve. My GI and I always attributed the previous flare ups to stress. Now that stress has been reduced, flare ups should, in turn, decrease, too. What else about this "black box" that is called Crohn's am I not aware of? Are there any life style changes that I should try? When I got my PhD last month, I visited my GI and he ordered me not to change the restricted diet I have been eating for years. I still follow this religiously. I really want to lead a normal life but how???
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate

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Date Joined Feb 2003
Total Posts : 16563
   Posted 1/14/2018 8:33 PM (GMT -6)   
One thing about IBD's, they are totally unpredictable. It took me awhile to figure this out too. Some people are lucky enough to respond & go into remission while on medications. Then there are some of us that do not get 100% symptom free without hitting a speed bump every now & then. The effect of the meds is an individual thing, they do not work the same for each person.

I am not on any specific diet, instead I kept a food diary for a long time & the foods that do not just set well with me I avoid. My gi is not one of these that insists his patients be on a certain diet. There are some drs that believe a specific diet will help along with the medications. Mine will toss out some recommendations. If a patient is having some problems he will give ideas on what to eat until they get over the hump. He believes in healthy & nutritional eating habits.

I don't let crohns or any other of my health issues define who I am. To me, if I go down that rabbit hole I will be be losing out on too many things that are important to me. I could be outside tomorrow & get taken out by a bus or something, there are no guarantees is another way I see things. When I hit that proverbial brick wall, which I do, I ride it out & remind myself this is temporary. Everyone has a different definition of what they call a normal life. You made it through school & that is a good size hurdle you jumped.
Moderator in Chronic Pain & Psoriasis Forums

Veteran Member

Date Joined Sep 2009
Total Posts : 1122
   Posted 1/15/2018 2:47 AM (GMT -6)   
I know what you mean. As straydog said, rule number one of chronic illnesses in general are they are unpredictable especially crohns. I can't count how many times it has thrown me for a loop/ something completely unexpected just when you think you've figured it out. So many times I have said to the GI " I'm confused..." not because I don't know crohns but because the patterns of symptoms and triggers are so darn unpredictable and change constantly. Currently the crohns seems to be quite for me (let's hope) I just finished my degree as well (not sure if I said it before but Congratulations on finishing!) though the crohns is quiet and I thought my stress level had gone down (still high but one less thing which is major) I just had my first migraine with aura in over a year and a half. It lasted for about a week+, messed with my vision for most of that time and left me feeling horrible. Never expected that now! In general with the crohns, I found that I would flare just after things calmed down. I would just get to the end of a semester and then during my break I would flare. Almost like my natural steroid level from the stress went down and then the disease would show itself or something. Give yourself some time though and things may very well turn around and you have more of a chance to recover.

Elite Member

Date Joined Jan 2010
Total Posts : 10555
   Posted 1/15/2018 6:29 AM (GMT -6)   
Congratulations on finishing your PhD, minnie.

I've more or less given up trying to understand the day to day vagaries of Crohn's. If I don't have any red flag symptoms (e.g. high fever, extreme pain), then I tend to ride out the pain, diarrhoea and nausea until it passes. It's frustrating as hell, particularly when it interrupts your sleep and there is very little which can be done to make it better. Unlike, say, ibuprofen for a headache, which really knocks it on the head, painkillers only help Crohn's moderately if at all. Stress doesn't seem to make any difference either. I've gone through mad periods of stress and my stomach has been calm throughout. (Although as Lab said sometimes the sh!t hits the fan shortly after...)

Plus on top of stomach woes, I've also developed chronic uveitis - something linked to Crohn's. I had barely heard of uveitis until I got a severe attack for the first time a couple of years ago. If there is inflammation in any other part of your body, there is a fairly good chance it's linked to the Crohn's, particularly if the joints, skin or eyes are affected.

I think you have to work around what you've got rather than try to go back to your pre-Crohn's state of health - that will never happen, unless you have ridiculously mild Crohn's. You've shown you've got persistence and determination already by finishing a PhD. Just apply those same qualities to the other things you want to do.

Veteran Member

Date Joined Jan 2003
Total Posts : 6179
   Posted 1/15/2018 11:15 PM (GMT -6)   
hey minnie, congrats on the Phd. i have 2 myself in the garage (post hole diggers!) ;o)

what country are you in if you said long time ago i don't remember. if the remicade and imuran did not work for you, could you get another drug to try, like humira, or one of the newer biologics?

Forum Moderator

Date Joined Dec 2008
Total Posts : 16553
   Posted 1/16/2018 1:11 PM (GMT -6)   
I am so sorry you're feeling discouraged. I agree with the others, firstly, congratulations!!!! but, like straydog said, it is totally unpredictable. People like to think they've figured it out, and the moment you do, that is the moment it goes against you even though you're doing everything under the sun to stop it. I used to think it was food, or stress, but elimination of these things ultimately didn't stop the progression for me. I tried to be more physical, take care of myself, eat like a rabbit, relax more, not work, not have financial or personal obligations, cut toxic people out of my life... still no improvement.

When was your last infusion? Was there improvement immediately following? I was a non-responder to biologics, I never got a moment of relief, but if you have had a reduction in symptoms, there is hope for adding meds, or adjusting schedule/dose. Have you had stool tests?

We all have ups and downs. It was always really hard for me to stay calm and wait it out. That was the biggest challenge for me living with IBD. Things will get better.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
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Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish
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