Is this normal ? 15 months since takedown & going to see the consultant

TimMMember

Hi everyone , i've been lurking on these boards for 2 years since i had my first surgery and knew i would be eligible for a pouch .

I have an appointment with the consultant/surgeon this month , for the first time since the takedown surgery in june 2012 , and could really use some advice as to whether the symptoms i have are normal for a relatively new poucher , or if there are specific things i should be highlighting to him /insisting he deal with ?

Overall i have been happy with the pouch and its definatley a fair improvement over the UC that hospitalised me back in early 2011 , however i have a few issues:

Urgency; i have a feeling of rectal pressure that comes in waves , when i go to the toilet undoubtebly there is something there , but i would not classify it as enough to signify a full pouch. This leaves me in a position where i dont like being away from a toilet for too long in case i have to go , even taking the dog for a long walk causes anxiety a bit as i know its likely i will have to fight these pulses

Incontinence; not complete incontinence , although complete night time accidents have happened , but i have to sleep with padded paper between my cheeks and there is always something on it .. also i have issues even during the day where this pulsing pressure on my rectum will push a tiny amount between the spynchter muscles and spot my underwear ..

Itching; This is not a constant , but every now and again i get this crazy itch right inside the rectum and i would itch it like mad if i could.

Bleeding; spotting of toilet paper , might just be abrasions from wiping so much ?

Regularity;I was expecting to go alot , but at times , especially at night , it can be every 30-40 mins and wakes me and sadly SWMBO up hourly through the night

this is perhaps the worst part as i haven't had a restful nights sleep in a year , but even with my ostomy i had to get up 1-2 times (sometimes due to paranoia of exploding bags!)

pain very occasionally (maybe 4 times) i have had what can only be described as a sharp pain inside my pouch near my rectum when passing stool

A couple of things of note , I had a course of antibiotics when I went to Egypt that appeared to reduce the urgency somewhat , however these caused even worse night time incontinence !

I have removed dairy from my diet in an attempt to trouble shoot the issue , but sadly doesnt seem to have any real effect.

I have been getting on with life since takedown , but after reading some of the stuff on these boards i wonder whether i have 1 or maybe numerous issues such as , cuffitis/pouchitis and maybe a spastic pouch ?

I have made a note of some of the drugs mentioned in previous posts such as lomotil , donnatal , bentyl , levsin etc . I have been to see my GP about these issues , but he says he cannot help as it would just be him experimenting and i need to see the consultant , but getting to see him has taken some considerable effort on my part , i only got a follow up appointment after phoning the stoma department nurses and asking if it was normal not to hear anything in over a year after being released from hostpital , and asking who i talk to for advice/issues with the pouch.

Anyways , thanks for reading and hopefully someone has some words of wisdom/advice for me

Thanks
tim

9/3/136:20 AM

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KeepFighting(Manny)Member

Hi Tim,

I don't know if I'm the best person to answer your questions as I am a very new j poucher (4 1/2 weeks to be exact) but I can tell you everything you are experiencing I am currently experiencing as well... I'm very concerned I might have pouchitis or something similar...bo have an appt with my surgeon today and hope to get some answers.. I have to say for me personally the nighttime incontinence is the worse, I too put a piece of folded toilet paper between my cheeks and wake up to always find something on it... Im hoping that goes away with time... Hopefully an experienced j poucher can shed some light for you, the only advice I have for you is to get in with your surgeon or GI Dr to get checked for pouchitis.. as from what Ive read the symptoms sound similar... Best of luck to you

9/3/137:27 AM

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Jan DollarModerator, RN, retired

If you were reporting these issues in the first few months post op, I'd say give it some time. But, being more than a year out, you definitely need to address your symptoms.

I am not sure how the NHS works, but in the U.S. the surgeon will follow up at least once after your discharge for a routine post op check, then again about six months later to be sure you are progressing well. At that point you discuss maintenance follow up with either the surgeon or he could release you to the gastroenterologist. It seems odd to just cut you loose forever and leave you on your own to figure out how to deal with complications.

Anyway, your symptoms could well be pouchitis, cuffitis, and or an anal fissure. But, the fissure symptoms seem intermittent, so perhaps it heals then breaks open again. These are all things easily diagnosed by examination and/or endoscopy. Irritable pouch and bacterial overgrowth are a bit harder to diagnose, but are presumed by eliminating other causes of your symptoms.

I know that I had chronic cuffitis for years because I did not know my symptoms were not good function. Like you, I managed but worried about accidents. Once treated, the urgency and bleeding stopped. I also didn't do myself any favors by avoiding the doctor for about three years because I was sick of doctors. I guess I was just minimizing my issues when I shouldn't have.

In the meantime, have you been taking any over-the-counter bowel slowers like loperamide (Imodium) or bismuth (Pepto Bismol)? They could help some.

Since you mention worsening symptoms after antibiotic treatment, you should inquire about C. difficle testing, as it is possible you could have developed that infection.

Hope this helps.

Jan

9/3/1312:02 PM

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TimMMember

Thanks for reading

i didnt think it was normal after doing a bit of reading here..

I have been taking 6 loperamide a day and for the most part they help to maintain a more solid BM , proved by stopping taking them and it turns to water !

I thought it was a bit weird to be left blowing in the wind for 14 months , i thought i would have had a follow up waaaaaay before now ...

Cheers

Tim

9/4/137:16 AM

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