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Good morning to all,

I would like to thank you in advance for reading this and providing any information or suggestions that you can.

I had my first surgery where they removed my full large intestine in January of 2016. I had my ileostomy for 2 year until January 2018. During the times with the ileostomy I had no issues whatsoever. I was active, ate what I wanted to, traveled, etc. I got my Jpouch created and reconnected in January 2018 and have been feeling generally unwell since.

The year of 2018 I took with a grain of salt because I knew there would be a large adjustment period adapting to the new pouch and getting used to using the washroom again. During these times I would be using the washroom many times in a day, in pain, and feeling gassy, bloated, and generally unwell.

Fast forward to March 2020 , I have tried a cycle of Cipro and Flagyl together because of some pouch inflammation seen on a pouchoscopy. The antibiotics made me feel better, but not normal by any means. From what I am reading on this site, people with a successful jpouch surgery and no other underlying issues should be feeling like they did prior to getting diagnosed with Colitis in the exception of using the washroom more often. Ever since getting off the antibiotics I have been going through SO MANY ups and downs.

I have been experimenting with supplements, diets, and more to try to get my symptoms under control. I have been working with a Naturopath for 3 months where I got some stool tests and a Food intolerance test.  I have some good days, and some bad days. But even on my good days, I do not feel normal, I watch every single thing that I eat, still in pain and discomfort and I am still stressed about when the next time I will use the washroom will be.

Ive had to stop exercising and going out to social events because most days I just do not feel up to it. Currently I am eating a generally low fibre diet, no gluten, no dairy, no eggs in hopes of getting some relief but still have so many bad days. At this point my mental health is a huge factor and it is completely deteriorated because I am scared of all foods now, and dont feel comfortable eating anything really.

I had a colonoscopy, a ESG for my upper digestive tract, and a CT scan recently to really figure out what was going on and why I am feeling the way that I am. According to my GI doctor, all is normal, and she has no idea why I am not feeling normal and has basically given up and referred me to a dietician.

My current symptoms are alot of gas, bloating, stomach pain, tailbone/hip pain, alternating bowel movement patterns, and now newly dealing with incontinence at night time which has been a HUGE bummer and something is telling me I have pouchitis again.

I could go on and on about how I feel, but I am just truly confused at this point as why I feel so bad for someone who's tests are coming back normal and I am not feeling well.

I am truly at Witts end with my Pouch because its coming up on 3 years now And I thought I would be feeling SO MUCH BETTER after getting these surgeries done.

I really appreciate any words of wisdom from anyone on here,

Thank you in advance,
Michael

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It's odd that the pouch looks good on a scope and makes me wonder whether some or alL of your issues are from the antibiotics.  I would stop the antibiotics, take Pepto Bismol for the gas and bloating and incontinence for a few days and see what happens. If your problem was dietary you would not have had 2 blissful years with the ileostomy, so it makes no sense to me why your GI gave up and sent you to a dietician when based on your history the problems are clearly related to either the J Pouch or the drugs being used to treat it.

You ultimately may decide you want to go to a permanent ileostomy which would be another surgery, but before you do that you might want to go off antibiotics, try PB for a few days and see what happens. PB will knock out the gas, and bloating and maybe the incontinence at night; removal of the antibiotics may release the tailbone and hip pain as it could be side effects of these meds.

Last edited by CTBarrister

@Mpale033 I’m sorry you’re going through this. Hard-to-diagnose problems can challenge us very deeply. Sometimes they’re things that the usual tests can’t find, and somethings more than one thing is going on, creating a confusing combination of symptoms.

It does sound like you may have pouchitis, and the nighttime incontinence, the observed inflammation, and the partial response to CIpro+Flagyl all point to this. One possibility is that the Cipro+Flagyl worked reasonably well on the pouchitis but one of them caused side effects that created your incomplete relief. You could try Cipro alone to test that idea. Another possibility is SIBO, which would explain the bloating, or a small abscess or pouch leak which would explain the tailbone/hip pain (this might be easier to see on MRI than on a CT scan), or perhaps a defect of some sort in the construction of your pouch.

Is there a more advanced health center they can refer you to? I suspect you may not get anywhere with the dietician.

Thank you both very much for your responses.

CT - I am not longer on Antibiotics - I have been off of cipro and Flagyl since Middle of August, and I had 1 course of Rifaxmin in October with no luck there at all either.

It is just bizarre to me that I seemingly have the best GI in the city (here in Ottawa, Canada) and she has no other suggestions other then a few antibiotics and the general testing.

Scott - A tool test i ordered through my ND showed evidence of SIBO, but i guess it is just as hard to treat as it is diagnose.

I am so so frustrated at this point with no answers.

THanks again

Thank you so much for the insight Scott.

Do you think there could have been complications arising from my surgery because they created my Jpouch and Connected it all in the same surgery? I did not have a period of a loop ileostomy where the Jpouch could heal.


I also have not been in contact with my surgeon other than my 1 year check up at which point I thought I was still ironing out kinks.



What could go wrong in the pouch creation to make me feel the way that I do?

I have heard of the 1 step procedure being done but I didn't think it was all that common. You ask some very good questions. Scott had mentioned the possibility of a leak and certainly that would be the concern with the 1 step. They would not even do my 2nd step until I passed a pouchogram which is basically a leak test.

If I may ask why did you choose to do the one step procedure? What was discussed at that time about the possibility of leaks?

I had a one-step procedure, and aside from an uncomfortable post-op period I’m glad I got it  over with. There is a higher rate of leaks with a one-step procedure. As far as other surgical issues, they are uncommon, and each one is a bit different, since the pouch is hand-made. If you’ve ruled out or fully treated pouchitis and SIBO and still have trouble then a visit back to your surgeon could potentially be helpful.

Mpale - these guys on this site are brilliant- follow some of their advice.   I feel like you will be okay - you sound tough.  Get the help you need on this site, it was so helpful to me.  I am eternally grateful.  I am sorry you are going through this.  I don’t have a hooked up JPouch yet - so I can’t offer great advice - I am just sick in between stages.  I can’t absorb water and need IV fluids. I hope to help other JPouchers when I am well.  Your life will be good.  You have lots of tests and medicines you can try. Lots of upside.

Omg Michael I feel the same way. When I got my pouch I felt my life would pretty much go back to normal. Boy was I fooled. My first issue with pouchitis was crazy because I didn’t even know what was happening and thought it went with the program until I spoke with my GI and found out it wasn’t normal it pretty much controlled my life until I was put on antibiotics. Once it clears up and antibiotics stopped it comes right back like a freaking bad dream so now taking antibiotics all the time. My Dr suggested medical marijuana as said some patients has had positive results.

Hi Angieb and Mpale,

Your stories are heart breaking.  I am so sorry.  I read these posts again.  I pray your JPouch gets better.  I am having tons of problems with my stage two recovery, loop, with tons of output and I am very worried about takedown.  In my head - I was planning on giving the JPouch a year - and if I was unhappy with it - then go back to and end ileostomy.  Now I have learned they could be a risky surgery.  I hope your situations get better, but how are you guys evaluating taking on another surgery to excise/divert the JPouch and go with an end ileostomy?  Especially Mpale, you had two excellent years with the first ileostomy.  One of my fears is the second end ileostomy will be about 40 centimeters shorter and will run faster.  Please let me know what you think.  Best of luck.  Doug

@Mpale033 posted:

Good morning to all,

I would like to thank you in advance for reading this and providing any information or suggestions that you can.

I had my first surgery where they removed my full large intestine in January of 2016. I had my ileostomy for 2 year until January 2018. During the times with the ileostomy I had no issues whatsoever. I was active, ate what I wanted to, traveled, etc. I got my Jpouch created and reconnected in January 2018 and have been feeling generally unwell since.

The year of 2018 I took with a grain of salt because I knew there would be a large adjustment period adapting to the new pouch and getting used to using the washroom again. During these times I would be using the washroom many times in a day, in pain, and feeling gassy, bloated, and generally unwell.

Fast forward to March 2020 , I have tried a cycle of Cipro and Flagyl together because of some pouch inflammation seen on a pouchoscopy. The antibiotics made me feel better, but not normal by any means. From what I am reading on this site, people with a successful jpouch surgery and no other underlying issues should be feeling like they did prior to getting diagnosed with Colitis in the exception of using the washroom more often. Ever since getting off the antibiotics I have been going through SO MANY ups and downs.

I have been experimenting with supplements, diets, and more to try to get my symptoms under control. I have been working with a Naturopath for 3 months where I got some stool tests and a Food intolerance test.  I have some good days, and some bad days. But even on my good days, I do not feel normal, I watch every single thing that I eat, still in pain and discomfort and I am still stressed about when the next time I will use the washroom will be.

Ive had to stop exercising and going out to social events because most days I just do not feel up to it. Currently I am eating a generally low fibre diet, no gluten, no dairy, no eggs in hopes of getting some relief but still have so many bad days. At this point my mental health is a huge factor and it is completely deteriorated because I am scared of all foods now, and dont feel comfortable eating anything really.

I had a colonoscopy, a ESG for my upper digestive tract, and a CT scan recently to really figure out what was going on and why I am feeling the way that I am. According to my GI doctor, all is normal, and she has no idea why I am not feeling normal and has basically given up and referred me to a dietician.

My current symptoms are alot of gas, bloating, stomach pain, tailbone/hip pain, alternating bowel movement patterns, and now newly dealing with incontinence at night time which has been a HUGE bummer and something is telling me I have pouchitis again.

I could go on and on about how I feel, but I am just truly confused at this point as why I feel so bad for someone who's tests are coming back normal and I am not feeling well.

I am truly at Witts end with my Pouch because its coming up on 3 years now And I thought I would be feeling SO MUCH BETTER after getting these surgeries done.

I really appreciate any words of wisdom from anyone on here,

Thank you in advance,
Michael

I’m sorry to hear your going through so much.
seems like your tried quite a bit of different therapies, have you tried switching doctors?
I was at at my wits end with my pouch until I found a doctor that specialized in the J-pouch and wow what a difference it has made.
‘Hope you find something or someone that can help you.

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