Any Ideas on How to Treat a Sore Arse After J Pounch Reconnection?

So here we are.

Bad colitis 8 years. Colon removed emergency surgery February and on the bag. Rectum removed and J pouch created in August. Reconnected about a month ago…..

…and my arse is sore. Like paper cuts with Satan gleefully squirting lemon juice. Even just rinsing with warm water is excruciating.

I started out strong after the reconnection. No problems at all and was impressed. Then slowly I found I was leaking a bit here and there. Then I was shitting myself at night. Now I’m shitting myself during the day. I have these spasms and I clench but I can’t always hold it in. At night I wake up and I’ve shit myself in my sleep. No warning. I clean up, go back to bed, and then it happens again. Sometimes though, if I’m awake, I notice if I move while I’m lying down it precipitates the spasms / contractions / peristalsis and I immediately have to hurtle to the shithouse.

During the day I go to the toilet, clean up, annnnd back to the toilet again, annnnd clean up, annnd back to the toilet again……

I am tired as I can’t sleep with the repeated nightly trips to clean myself up. It gets so bad that sometimes I have to take the strong painkillers, left over from when they sent me home from hospital, just to get through the night.

I am doing / trying the following:

· Loperimide

· Metamucil

· Barrier cream

· Colifoam

· Proctosedyl ointment

· Rinsing with warm water and drying with hair dryer

· Simple food

Every day I seem to get a little worse.

I’m hoping someone out there has been through this and can advise that it does get better.

I return to see the surgeon in a week. Advice from that quarter so far has been “it might take a year till you come right…your body adjusts…blah blah”

Any idea, comments, etc. are greatly appreciated. Have I got pouchitis? Is there damage to my spincters? Is it Crohn’s? Will I ever play the piano again?

Thanks to Adam and the kind community of UCulators.

Feel free to ask any questions regarding my colitis and treatments; only too happy if I can help.

Cheers,

Peter




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butt burn, j-pouch, leakage

12 Responses to Any Ideas on How to Treat a Sore Arse After J Pounch Reconnection?

  1. shelly in maine November 22, 2014 at 6:47 am #

    Peter..so sorry to read about your complications…did you go back and check some of the old surgery stories and post directly to Blake, Baker, etc?? (You may get quicker answers that way.) You’re sure to get back on track soon…glad to see you haven’t lost your sense of humor! Hope you get some answers soon. Well Wishes, Shelly

  2. Adam
    Adam November 22, 2014 at 7:42 am #

    Peter, I’m super sorry to hear as well about the tuff times you’re in the middle of. I think Shelly is right, there’s some great stories on the site from others with lots of detail about their post J-pouch progress. Here’s the link to J-pouch related stories, you’ll see your’s listed at the top, but below you can scroll down to older stories, and then click through to the next few pages etc…

    here that is:

    https://www.ihaveuc.com/journey-to-a-j-pouch-completed/

    Also, I just found an article after a quick PubMed search for the search term: “J-pouch”. Anyways, I thought you might gain something from reading this study that was completed and uploaded recently, here’s the title of it and the link to the full study:

    Complications after ileal pouch-anal anastomosis in Korean patients with ulcerative colitis.

    http://www.ncbi.nlm.nih.gov/pubmed/24966620

    (you can click on the link they provide via the link above to review and read all the text in its entirety, just click the link above first)

    Keep us posted Peter, and we’re all pulling for you:)
    -Adam

  3. PeterNZ November 22, 2014 at 6:58 pm #

    Thank you!

  4. Mindy November 23, 2014 at 12:11 am #

    Hi Peter, so sorry to hear about your complications. I too have a j pouch and was reconnected around two years ago. I totally know where you are coming from, I’ve experienced some of the same symptoms. Its very frustrating. You’re body is going through a period of adjustment, hopefully it will get better over time. From my personal experience, sounds like you might have pouchitis. With my personal case, I still had UC with the small amount of colon left for the j pouch, so now I’m on an immune suppressor to help with the symptoms. There are many treatment options available to you. Feel free to e mail me if you have any questions. My prayers are with you.

    • Peter November 26, 2014 at 8:40 am #

      Hi Mindy,
      It appears your were on the right track and I have cuffitis. Thank you form your prayers and help.
      Peter

  5. Bev November 23, 2014 at 8:55 am #

    OMG Peter…I LOVE you!! You are perhaps, the best ‘post-er’ on this f***ing site!

    Thank you so much for being hinest…it is important that we all know that nothing in life is easy…there is always something…always a trade off. It all ain’t sunshine and puppy dogs…

    I have not had surgery…not yet anyway, so I can’t say what’s wrong. If the arse hole burns like you say, could that be a lot of acid? Anyone out there know? I sometimes get that and I haven’t even had that surgery…so, I always thought that it was acid in the crap that our good old bodies can’t process properly???

    Anyway…best of everything to you, my friend. You are one of the long-timers on here and we all love and appreciate you! We can all tell what a great guy you are ny your sheer honesty and integrity.

    KEEP GOING AND KEEP POSTING…btw…Gold Bond Cream works for the burn…don’t know if you have that over in the NZ???

    • Peter November 26, 2014 at 8:14 am #

      Thanks Bev,
      If only I was 25 yeas younger….

      • Bev November 26, 2014 at 9:22 am #

        Hah!

        I hear you there… :)

  6. J November 23, 2014 at 4:00 pm #

    The probiotic VSL#3 DS – available by prescription- has been proven to be effective for pouchitis in studies. You might ask your doctor about this. Best of luck and I hope you feel better soon.

  7. Jim Miller
    Jim November 25, 2014 at 3:38 pm #

    Peter,

    I have a j-pouch too, but haven’t had the plumbing connected yet. I’m due for takedown next week. I’m awaiting this with dread, but have been warned like yourself it could be a year before things are sorted. I’ve been having a few pre-reversal problems like iron anemia, and have been given lots of great advice by a Facebook group of j-pouchers. There are some real old timers in this group and they are bound to have advice. Check them out:

    https://www.facebook.com/groups/2220932072/

    I’m on there frequently having a good old whinge about my f*cking awful loop ileostomy (can’t wait till it gets popped back into my body).

    Good luck mate,

    Jim

  8. Peter November 26, 2014 at 8:09 am #

    Hi guys,

    Thank you all for your replies. I have been replying to you all but it appears they have all bounced back for some reason. Maybe because I used another email on tablet computer instead of normal PC? Who knows; anyway…..

    I have now been back to see my surgeon for routine follow up. He said I needed to be probed and to disrobe. I asked where I should hang my pants and he said “over there with mine”. Not the reply I was expecting! (Just kidding).

    Surgeon reckons that I’ve been doing all the right things to treat butt burn. I’ll write it up for others. He also reckons after digital examination that the new pouch is all good and no sign of strictures etc. His opinion is that I have cuffitis and will need to keep treating this. For this I have a new script for colifoam. The trick is to keep the poop firm apparently. This I find is easier said than done. I am advised that I can take loads of loperimide without fear of dodgy side effects e.g. liver or kidney damage etc. so I’ll step that up. Like 10 is no problem. The butt burn is getting better. I think the best thing is to air dry thoroughly every time. This meant staying home a lot for me. This also means a lot of broken sleep (its 3:30am as I type this).

    So basically all is well with the reconnect but it will take some time to get it under control. Like a year or two. The ideal outcome is 6 shits a day. Would be nice.

    Now don’t get me wrong – the surgery was certainly worth it for me. I myself had no choice in having my colon removed though. It was rooted. It really didn’t work just bled. I was on loads of meds that didn’t work neither but still provided nasty side effects. My colon was riddled with inflammation, scar tissue, polyps along its entirety. I saw it all live during colonsoscopy. If I had persevered with it the likelihood of undetected cancer was pretty high. So with non stop bleeding and anemia and just being really sick it just had to go. I tried for 8 years to keep it but in the end it was a relief in the end to make the big decision to just say “OK, rip the bastard out”.

    But, remember, you have an option to stay on the bag permanently with an end ileostomy. You don’t have to be reconnected. I chose to reconnect, in 3 stages of surgery, and had rectum removed in the next operation and a j pouch created. This work is left to heal and you have a temporary loop ileostomy in the meantime. It is surely a relief to be rid of the temp ileostomy (as Jim is looking forward to doing so). An end ileostomy is a lot better and easier to manage. I believe this is because you are using all of your small intestine. With the loop you have a much shorter tract. I had major trouble initially with dehydration. The bag would just fill up all the time with “brown water”. Then I found metamucil which helped a lot. Others my be looking at voluntary surgery. Everyone is different but please dont let my little bit of butt burn put you off. Do your due diligence and get a few opinions. Only you can decide what is right for you and to do that you need information to make an educated decision.

    For the record the first surgery was pretty easy and I got a lot better immediately as I no longer had a diseased organ making me sick. I did have a big cut in my belly. Surgery number 2 was more involved and took 6 hours. This was because my remaining rectum was frazzled with colitis and took a lot more effort than expected to remove. Recovery after this was a bit longer. I think this might have something to do with being under anaesthetic for so long. Still only a few days in hospital though. Surgery number 3 was a piece of piss and I went home the next day….then a few weeks later the butt burn!

    These ups and downs are all part of the journey. They make you the person you are. Take it all in your stride and look to a better future. Colitis has never stopped me doing anything (e.g. I did a 3500 km road trip around NZ recently this year while I was on the bag without any real incident). Next year I look forward to getting back to work full time and just getting on with my life. I’m sure there will be more ups and downs it nothing I can’t get through.

    Thanks again for all your help and good luck on your own personal journeys.

    Peter

  9. Audrey December 31, 2016 at 9:22 am #

    Peter- I know it has been a long time since this post but if you still subscribe, I was wondering how you were doing now?

    My husband (Ryan 33) is s/p jpouch recreation over 2 years ago (Cleveland Clinic) after a ridiculous amount of surgeries and is still struggling with the issues you disscussed a couple years ago. He has also had an FMT (pill version) due to antibiotic resistant Cdiff which helped at first, but not entirely. Anyways I was just curious if you were able to get rid of the cuffitis and move forward. Thank you, Audrey

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