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Hi all,

I am new to this forum, however have been relying on it from time to time since my multiple surgeries. I decided to set up an account so that I too can post and hopefully help out other fellow pouchers & ostomates!

Anyway, to cut a long story short I have had 3 stage surgery for a J-Pouch due to having suffered with UC for a period of years beforehand. Final take-down was in November 2019 and since then life has been somewhat good. 

Recently, in the past 2-3 months (funnily enough since the COVID-19 lock down began) I have noticed a bit of a change in my bowel patterns. My frequency has increased from 4-6 movements a day with 1 a night to 6-9 a day with 2-3 times at night. I have also noticed an increase in urgency in the sense that when I now need to go, I have the usual feeling of pressure which is accompanied with a sense of urgency in waves of spasm and continues to do so until I evacuate. This is somewhat annoying as I feel like sometimes I cannot hold onto it and really need to clench to avoid soiling myself! However, when I do go to have a motion, I find myself sometimes having to strain to completely empty my pouch along with quite significant sensations of stringing and itching after the movement. I have feelings of gurgling and gas when my pouch fills up and believe a lot of the sense of urgency comes from this gas. I have been in touch with the J pouch nurses who have since put me through 2 rounds of Cipro and I feel this has minimal effect if any so I do not think it is pouchitis. 

I have previously had to have a stricture dilated between steps 2&3 of my surgeries and am wondering if the straining is due to this stricture having re-formed? To try and help, I have been using Sitz baths and creams to help sooth my sphincter muscles as I feel they are somewhat tight and not relaxing as they should be. 

Any thoughts, help & advice for this would be welcomed, as I say the main inconvenience for me being the urgency. 

Kind regards.

VB

Replies sorted oldest to newest

Even though Cipro didn’t help this may nevertheless be pouchitis - the symptoms are spot on. A course of Flagyl is probably worth a try, which might work even though Cipro didn’t. I’d also suggest discussing a visit and/or pouchoscopy with your surgeon or GI - that stricture may have tightened back up. Good luck!

Scott F

Thank you for your reply Scott. 

In terms of the pouchitis, could this be related to the fact that I nay have a stricture? By this, I mean could the pouchitis/inflammation be a direct result of not properly evacuating my pouch on each bowel movement?

The reason I ask this is because I myself am very certain I have some sort of tightening based on the fact that I have found myself having to strain quite significantly as of late and also feel that there is some discomfort whilst working - It probably doesnt help the fact that I have been working from home since the lockdown began in the UK (March time) and have extended periods of sitting on the location where the anastamosis/stricture would be! Of course a proper diagnosis by my CRS would prove/disprove this but I just wanted to know other peoples opinions.

Kind regards.

VB

V

 VB- Do you know where the stricture is? Strictures are quite common at the J Pouch inlet due to inflammation from backsplash stool but are more likely to cause inflammation above rather than in the Pouch. Or right at the inlet.

I otherwise agree with Scott that increased urgency and frequency are hallmark pouchitis symptoms. Incomplete and difficult, straining evacuation are also symptoms. Best plan would be trying other antibiotics and biologics if that doesn't work. 

A stricture at the J pouch outlet could be indicative of cuffitis. They are not really that common there though.

If it feels like stool is hitting a wall it's possible a septum developed within the pouch. I had this issue develop in 1998 and the pouch was surgically revised which resolved the issue.

CTBarrister
Last edited by CTBarrister

Thank you for your replies. 

So the consensus is leaning towards pouchitis, would this cause symptoms to be more apparent during the evening? I guess when the pouch is filling up with from what I have eaten throughout the day? Or would the symptoms of urgency be there all the time?

In terms of cuffitis, what other symptoms would this cause? Would this cause an uncomfortable sensation when I sit on my bottom? It kind of feels like I've got swelling in the anal canal? I would also add that when I have sitz baths, my anal canal feels like it relaxed significantly to the point where I can feel some stool coming out into the basin itself (sorry if this is TMI!). Would just love to get to the bottom of this issue. 

 

Again, sorry for all the questions but Would just love to get to the bottom of this issue as otherwise I'm really happy with my pouch function.

Regards.

V

If antibiotics don’t help, though it may take more than one or two courses of them, I’d question whether it’s pouchitis. Could be structure which I know nothing about but I have a prolapse of my jpouch tissue which causes similar issues emptying/ straining of pouch. I find I can’t empty, then as soon as I relax and start to fall asleep, I have seepage. Or can’t empty then after standing up, walk to sink, then I do.

hoping another round of antibiotics or different ones help- way better than alternatives. Good luck!

L

VB,

As someone who has in the past treated both pouchitis and structural issues with the pouch as discussed above, I think your pouch should be scoped in order to get to the bottom of the issue. You should at least try another antibiotic or two and if they prove ineffective get scoped. It's not automatic that antibiotics will work on pouchitis and there are chronic refractory cases of pouchitis, but a scope should determine whether it's  that or a possible mechanical issue such as what I described above. If you have serious pouchitis then you will need to be put on biologics before you deteriorate further.

Getting a pouchoscopy in the USA now means a mandatory Covid 19 swab test, something I myself will have later this week prior to my own pouchoscopy on June 29. It's probably the same in the UK.

CTBarrister
Last edited by CTBarrister

Thanks all for your replies on this matter. Just an update - I have since had a scope done and it showed a very significant stricture that was so tight they couldn't actually pass the scope through! Hence the feeling of not being to completely empty and frequent visits to the bathroom. I am awaiting a dilation procedure for this and my GI seems to think this will resolve the issues I am having. I hope this helps anyone else who may be in the same boat and experiencing the same symptoms. 

Kind regards.

VB

V

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