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hi i am new to this forum , i was looking for some advice on problems i have experienced since having my J pouch in march 2014.

how long does it take to get better, ? its been over a year since i had my surgery and i have been in and out of hospital with problems since it.

i would like to go back to college , i have already missed a year since i had the operation but was hoping to go back this term and finish of my music diploma , this i was looking forward to but im still struggling with constant diarrhea , i find the gassy pains though the worse, is there any good remedy for gas pains that i could try , i was told i have fistulas as well which is why im in so much pain when i go to the toilet, i am worried incase my consultant says i have to go back to a bag , so any information you can offer would be of great help. thank you 

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Sorry you are having such a rough time.


Fistulas are a complication that are not comparable to most of us who have a typical recovery with the minor setbacks that are more easily resolved. So, I don't think you will fall into the category of being able to predict a better outcome. For most of us, 6-12 months is the typical expectation for a reasonable function.


A lot of gas is usually due to too much bacteria. So you either have overgrowth or an infection/inflammation. Not surprising if you are dealing with fistulas. If you are already on antibiotics, you may need something different, including a combination.


Unfortunately, fistulas are notorious for being persistent. If it has not healed after a year, it is not likely to heal. There are a number of folks here with them that will probably chime in.



thank you Jan for your reply , the consultants did try and put me on two different antibiotics before, but due to my acute generalised exanthematous pustulosis i was not able to have most of them, i have been having though the infliximab infusions every 6 weeks this did help at first but i don't think they are working as good now,.

could the fistulas heal if i take loperamide to stop hopefully going to the toilet as much , also the doctor said i had some kind of thickening  above my pelvis , does anyone no what that means ? i do have to have another MRI soon to check this thickening, thank you for taking the time to reply back

best wishes 

If infliximab was helping, but stopped being effective, there are other biologics to try that may be useful. However, it seems that you have complications upon complications, that lean to a diagnosis other than UC. Have the docs discussed a possible Crohn's diagnosis? May not change your current treatment plan, but it might mean a quicker option of ileostomy. 


I agree with Scott. Loperamide might help with your symptoms, but it will do little, if anything, for the fistulas.



Are they perianal fistulas?  I imagine they are. I have one. Unfortunately, I only have a seton drain. Humira didn't close it (I was hopeful, but oh well).  Steroids help mine chill out, but you can't live on steroids forever. *sigh*

I will say that just the nature of our loose more acidic stool irritates fistulas. I only go 4-6x a day and none usually at night, and even on my low days, it still can be irritating. What I eat matters too. Too much acidic food = unhappy fistula.

Message me if I can offer any advice. One bit of advice I will give freely is get a sitz bath. Helps soothe a sore butt. Fill with super warm/kinda hot water and some Epsom salts, and soak. Then slather on your favorite butt cream. It can offer a bit of relief at the worst of times.

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