pouchitis jpouch complications

Pouchitis again

Sorry I’m not about much right now, I’m getting over another bout of pouchitis and its knocked me quite a lot.

Pouchitis is when an internal pouch becomes inflamed. It is a common complication in people with an ileo-anal pouch or continent ileostomy.

Symptoms of pouchitis include:

diarrhoea, which is often bloody

abdominal pains

stomach cramps

a high temperature.

So after a trip to the hospital, I’m on a course of antibiotics called Ciprofloxacin that are definitely helping with the symptoms but are making me very dizzy and nauseous too. I’m also taking fluconazole to counteract against the dreaded thrush that I get with any antibiotics now.

I’m back at hospital on Tuesday for a scope and to reassess whether to keep going with the meds.

Sorry this is so brief but I’m struggling to put sentences together right now!
Sam X

14 replies
  1. Caren Hartka
    Caren Hartka says:

    Sam, enough is enough! If this is what you have to look forward to in the future, perhaps you should consider going back to a permanent ileostomy and take charge of your life.
    Wishing you a very speedy and easy recovery. xox

    • sam
      sam says:

      Thanks for getting in touch, I do have to remember that there are long periods of time where my pouch is very well behaved. An ileostomy has lots of downsides too. Im seeing my consultant tomorrow and will chat to him about all my options x

      • Caren Hartka
        Caren Hartka says:

        Sam, almost a year and a half Into it, and I haven’t discovered a downside to my ileostomy yet. No blockages, no leaks, no restrictions, no medications! You were a huge help in making me feel comfortable with my body. It hurts my heart to see you struggling with your Jpouch…I just read your next post. I’ll be thinking about you today and hoping that your consult goes very well. Feel better!

      • Karen Hardiman
        Karen Hardiman says:

        Hi Sam,

        So sorry to hear your poorly right now. Do you think going back to a perm ileostomy is a good idea. No meds, no sickness, ok you have to deal with the bag every day but you would be so healthy. I ask this because my 5 year old daughter has an ileostomy since 2013 after a short fight with UC. She is so healthy now, rarely sick (bar the odd tummy bug). She has to option when she is a teen of reversal, and tbh as her mummy I hope she doesn’t want it. Simply cause of all the problems it brings, like what you are going through right now and a host of other problems. Do you remember being this poorly with your bag? I hope you recover from this very soon Sam, take care God bless xxx

        • admintimm
          admintimm says:

          Hi I do have good times with my pouch so definitely don’t feel ready to give up on it yet.

          There are times when my pouch is SO GREAT! I go a few times a day, no problems, no worries.

          Please don’t let my experience put you off. I was told it takes a good 2 years to recover and I’m 18 months post op now so I hope things will improve x

  2. Rinse
    Rinse says:

    Poor you Sam. I just wish medical science had moved on enough that they could do more to help you (and countless others). The truth is they still have very limited knowledge and are just groping in the dark. Wishing you a speedy recovery.

  3. Marijke
    Marijke says:

    Dear Sam,
    I’ve been following your blog and facebook for some time now, and I would like to give you a reaction. I was diagnosed with UC in 1990 (I was 22 then) and had a colectomy with J Pouch in 1992-1993 (had an ileostomy for one and a half year). So I’ve been living with my pouch for over 20 years. I recognize nearly everything in what you write. My daily life has been the same as yours all those years: up to 8 stools a day, fatigue, watching what I eat to avoid gas, 5 surgeries for intestinal occlusion, etc. For many years, I suffered from frequent episodes of pouchitis. But, 7 years ago, they put me on Remicade (Infliximab) – these are drips (is this the right word?) I’m having every 4 or 6 weeks. Since then, my pouchitis is under control. It’s heavy stuff, but perhaps you can talk to your doctors about it. I feel a different woman since I have it.
    I would like to end with a positive note. Despite of all this, I live a really rich life! I managed to have 2 healthy children under difficult circumstances, I travel a lot, I work, I socialize… I do have my bad days and I have to anticipate when I know I will have a busy day, but I rarily have to cancel my plans. You’ll see, everything will be all right! Don’t give up your pouch! Just try to find a solution for your pouchitis…
    Warm Belgian greetings,
    Ps. Thanks for your blog and FB posts. They mean a lot to me…

  4. Donald
    Donald says:

    Hi Sam thanks for sharing your experiences with us . For the ones like me who still living with our colon it gives us a perspective on what we might have to deal with later on. So far I feel lucky that I decided to keep my colon all thrue this. I’m doing much better now days with lots of restrictions specially in my diet but well worth it . Keep your spirits up your a thought cookie better days are ahead .thanks again
    Donald from Canada


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