Pouch issues

If you follow me on twitter or Facebook you may have seen that I’ve been having a few problems with my j pouch recently. After everything had settled a little, I was going to the toilet around 4-5 times a day which is pretty good for a pouchee. But for the last few weeks I have gone downhill and I’m currently going to the toilet 15-20 times a day and I’m having periods of bleeding.

I’m taking 4 loperamide a day and it’s just having no effect. I went into hospital last week for a flexible sigmoidoscopy/pouchoscopy and the results came back quite normal with a tiny bit of inflammation but not enough to be causing problems. So next step is to try and figure out what us causing the problems.

I have been tested for coeliac disease and I’m awaiting the results from that. I am going back into see Mr Brown on Thursday in clinic and we will see where we go next. Through email we have discussed a little plan of a low residue diet and using fybogel and then discussing an MRI to see if there’s any inflammation elsewhere in my system and use of medication.

So there’s the medical side… From a personal perspective I am struggling. I’m feeling quite down about this setback, it’s difficult to feel like I am back to square one. I’m going to the bathroom as much as I did during a flare up before my bowel was removed! It’s tough to feel like this after a years worth of surgeries and recovery.

I have been away this weekend with the marvellous Responsible Fishing, an arts group that I work with. We put on an event called Tidal Gatherings in Sandsend with stone balancing, sand and land art. It was fantastic but dealing with running to the toilet 20 times a day was very hard work. I had an accident once and waking several times a night was exhausting both physically and emotionally.

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It makes me feel a little removed from the situation when I’m like this. Like I can’t be fully engaged with the people around me as I’m constantly thinking about my guts and where the nearest toilet is. I feel like I need to just keep going and can’t let the team down but at the same time that I’m doing a half a job. All in all I’m just feeling quite sad.

I woke early one morning from our caravan and walked with Timm and our dog out to see the sunrise. I tried to find the silver lining by thinking about how I would have missed this gorgeous sight had I not been sleeping so poorly. That early morning silence was a really lovely time with just me and the husband and it was perfect.

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I’m worrying lately that having pouch surgery was a mistake. It is so hard at the minute and I kind of miss my ileostomy bag. Though it had it’s problems it did make running for the toilet fairly defunct! I was informed that recovery from pouch surgery can take up to two years and so I suppose that I need to have some patience.

I’m still really happy under Mr Brown and the team in Sheffield. These problems are unfortunate but I do feel like I’m being heard and that I’m being cared for really well. And so I will just have to see how I go, I will update after Thursday to see what happens next.

Thanks for reading

Love Sam xx

12 replies
  1. Caren Hartka
    Caren Hartka says:

    Sam, you didn’t make a mistake getting your pouch surgery. Even if it doesn’t work out for you, and you’re one of the people who go back to having your ileostomy bag, you always would have wondered and regretted not trying.
    I’m sad that you’re suffering in this way after all you’ve been through. If you decide to go back, it’s not giving up. A person should only have to take so much!! Enough already!!
    Sending you big, big hugs and hopes that your pouch gets into gear soon and you start feeling better.
    xox
    Caren

    Reply
  2. Caren Hartka
    Caren Hartka says:

    Sam, you didn’t make a mistake getting your pouch surgery. Even if it doesn’t work out for you, and you’re one of the people who go back to having your ileostomy bag, you always would have wondered and regretted not trying.
    I’m sad that you’re suffering in this way after all you’ve been through. If you decide to go back, it’s not giving up. A person should only have to take so much!! Enough already!!
    Sending you big, big hugs and hopes that your pouch gets into gear soon and you start feeling better.
    xox
    Caren

    Reply
  3. Brian
    Brian says:

    Hey, four loperamide is still quite a low dose. After my total colectomy and ileo-rectal anastamosis I was on eight loperamide for four months. After 12 months, I’m on three loperamide a day. Perhaps trying a bigger dose will help? Good luck.

    Reply
  4. Brian
    Brian says:

    Hey, four loperamide is still quite a low dose. After my total colectomy and ileo-rectal anastamosis I was on eight loperamide for four months. After 12 months, I’m on three loperamide a day. Perhaps trying a bigger dose will help? Good luck.

    Reply
  5. kath
    kath says:

    Loperamide did nothing for me, l was taking 20 a day along with 4 codeine and mi ileostomy bag was still fillingup a d needing emptied up to 14 times a day.my gp took me off it all gave me a lose dose anti depressant and a little sachet called morform that you pput insideyyourbag Iit thickens everything up dramatically reducing the amount of leaks that l have, glad your on the mend Sam, your blogs and posts have been a godsend to me

    Reply
  6. kath
    kath says:

    Loperamide did nothing for me, l was taking 20 a day along with 4 codeine and mi ileostomy bag was still fillingup a d needing emptied up to 14 times a day.my gp took me off it all gave me a lose dose anti depressant and a little sachet called morform that you pput insideyyourbag Iit thickens everything up dramatically reducing the amount of leaks that l have, glad your on the mend Sam, your blogs and posts have been a godsend to me

    Reply

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