Crohn's symptoms after otherwise healthy pouch?

Did anyone develop this and if so, what were the early signs?

I've had my pouch since 2011 and while there were a lot of complications to get there, once it was over I ended up doing very well. The pouch is still objectively pretty good. I actually have semi formed stools and don't go to the bathroom very much at all relatively speaking - like 2-5 times a day.

While this is still true, I've had some puzzling symptoms. I would get these INTENSE cramps that would last about 5 to 6 hours. It happened only in the Spring and Fall. I blamed it on school stress since I was home in the Summer. At first I connected it to the fact that I'd had milk before all of the episodes. So I stopped drinking milk and was in the clear for a while. Then it would happen after drinking soda - I blamed the carbonation and stopped drinking that and was okay. Then I ate some dried fruit and it happened again! The pain is awful, and I can't stand up straight when it's happening. I burp and fart but not much. Once I threw up and immediately felt better so I thought it was stomach acid. But even the most potent antacids do not help. 

I realize that dairy, carbonation, soda, and high fiber/low water content foods are all risky as it is. But, now I feel like I've made enough bad diet choices that I've set something into motion that I can't stop. It hurts now and I haven't eaten anything since last night and it's 11am. It's granted only 1/10 the level pain I have during a real episode, but I can still feel like something isn't right.

I also had some blood come out of me, but my period is also coming and I can't tell where the blood is coming from. My poop seems normal otherwise. No diarrhea, no fevers, nothing else.

I don't know what to do. My life was nearly ruined by ulcerative colitis and the j pouch let me finally go back to school and fulfill my dreams at 38. I do not want this taken from me, too. I'm only a year into my PhD -  haven't even gotten to start my lab research yet. I don't want to have to start the hospital life again and never get to pursue this dream. I don't want my husband to divorce me because he's tired of me not being healthy.

Original Post

I am someone who has a diagnosis of Crohn's/chronic pouchitis and what you describe are not likely "Crohn's symptoms."  Your post suggests intense stomach cramps that comes with consuming various foods.  Given their intensity and chronicity you should probably see a doctor and have appropriate diagnostic testing done, whether a endoscopy or upper GI series or something else as determined by your doctor.  In 26 years of having chronic inflammation in my J pouch I never had anything remotely resembling your symptoms and do not know why you call them "Chrohn's symptoms" because they are not in my experience.  Uncontrolled Crohn's usually results in frequent BMs, nocturnal incontinence and some cramps, but not like you described.

That helps. I call them Crohn's symptoms mainly because 1) I am an obsessive worrier (having concurrent mental illness with IBD is fun times) and 2) someone else I know had these symptoms, but who has a colon, and is currently seeking a diagnosis for what her doctor thinks might be Crohn's.

Maybe it is just reactivity to food - I've decided to go back on the Specific Carbohydrate Diet for a while. Of all the goofy wacko diets, that one actually made the most scientific sense to me. 

The SCD has similar principles to the other so called wacko IBD diets, all of which reduce the amount of processed carbs and sugars in the diet, which tend to exacerbate inflammatory bowel disease. You may want to look at the UMass AID/IBD diet, which is specifically formulated by medical professionals for patients with IBD. It’s very similar to the SCD diet:

https://www.umassmed.edu/nutrition/ibd/ibdaid/

Hi there. I actually was diagnosed with Crohns after my surgery. It turns out that Crohns can present like Colitis. The telltale sign is a centre-line fissure in the pouch. The good news is that I ended up using acupuncture to manage the Crohns and I haven't had symptoms in 25 years. My j-pouch surgery was in 1993.

Best to have it scoped and confirmed either way. Good luck and I'm sorry that this is happening. 

 

Hey RebelSue! I am looking at a possible Crohns diagnosis after having my pouch for almost 18 years. I had very few problems for 15 years (besides developing an annoying fistula about 8 years after having my pouch). The fistula of course was a huge red flag but I didn't have pouchitis symptoms, my blood work looked awesome, and I rarely had pouch issues like leakage unless I had some sort of GI infection. I don't know WTF happened to my pouch/immune system but after 15 years of almost zero issues (and 3 years into my insane PhD program/the birth of my daughter/surviving a health crisis with my husband), my fistula and pouch went to hell. I suddenly started having horrible fistula inflammation to the point where I got a seton and even after that it abscessed. I was on and off of combinations of flagyl/cipro/augmentin for over a year. I just got scoped and my small intestine looks perfect but I have small ulcers in my pouch. I am waiting on the pathology results. Apparently this is something that happens but I think its rare for things to be so good for so long and then end up with this kind of diagnosis. I am looking at Remicade/Humira depending on the pathology results and not at all happy about it. I wanted to say that if this is a rapid onset thing definitely schedule an appointment with a doctor. You could have pouchitis or a stricture and both of those are easier to fix than Crohns. It is also possible you have some sort of food allergies/sensitivities that only manifest when you are in an inflammatory state. I have horrible seasonal allergies and it turns out that if I am reacting to pollens in the spring, I also can't tolerate some foods I can normally tolerate. Anyway, it sounds a lot like gas pains that are made worse by something happening with your pouch. Good luck. PM me if you want to bitch about the combination of a PhD program, a husband that isn't super supportive/has a lot of their own needs, and a J-Pouch that is acting up. I used to be LC btw but for some reason I couldn't access my old login profile.  

I am J poucher whose diagnosis was changed from UC to Crohns. I had my colon removed in 1992 and J pouch formed/connected in 1993. I had some bumps along the way...fissures, skintags excised to “help reduce fissures”, and a stricture at the inlet of my pouch which they did surgery to open up. In 2013, everything started falling apart. I was diagnosed with iron deficiency anemia and started getting iron infusions. My rectal area became really angry/inflamed and I just did not feel well overall.  They suspected Crohns and put me on Remicade. I loved Remicade but developed antibodies 1 to 1.5 years out. Then I tried Humira and Cimzia but I had no luck with them. I developed two fistulas and went down the seton path and was miserable. I was so sick by the time I got to Cleveland Clinic that they left my J pouch in and gave me a “ temp ileo” for sone relief. I was really a baby with those setons in. Hated them. HA!  Cleveland Clinic and Remzi once he moved to NY told me that they have seen a UC to Crohns diagnosis change in patients and it usually occurs when people have their pouches longer. I guess mechanical/surgical errors/complications rather than disease are more often the common cause in early pouch problems.  I don’t think your symptoms are pointing to definite Crohns either. I have never had a problem eating anything and abdominal pain has not been a prominent symptom for me. I feel like most of my issues are and have been peri-anal. I reAlize everyone is different and it seems like people have some variety in their symptoms. Shen told me that he has seen people with terrible disease and minimal symptoms and vice versa. These diseases are tricky and can be mentally draining with all the what if’s, etc. I hope you get an answer to the cause of your problems b/c the unknown is very frustrating. Good luck and hang in there!!

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