1. Community
  2. Gut, bowel and stomach
  3. Ulcerative Colitis

Just out of Hospital after ileostomy.

Posted , 7 users are following.

chris91672
chris91672

Hi all,

New here. Diagnosed with UC in 2003,10 + years on Prednisolne, Asathiaprine, Pentasa, finally Infliximab when nothing else worked. Hospitallised Jan this year, in three weeks and finally had to have ileostomy. So I now have the dreaded bag. It's not THAT bad to be honest, but only been out three weeks. I'm worried about going back to work, I'm an Electrician, and it's very physical. I'm told 13 weeks from the op, so 10 weeks now, that sound about right?

0 likes, 21 replies

21 Replies

Prev
  • Maryjo
    Maryjo chris91672

    Posted

    Hi Chris.....how are u this week.Hoping u r continuing to improve.  Also a? For u.  Did u suffer from fatigue during ur time of uc and if so do u now notice this disappearing. I always thought it was due to bleeding and low iron stores bot apparently study has been done and fatigue is a symptom of uc.  I was wiped today. I get up in mornings with low grade tiredness which gets worse as day goes on ! I was putting it down to my age but after reading info on it think it's the uc, so now I'm curious if post surgery uc ers feel less fatigued, if at all,  and at least that would be another reason for making surgery worthwhile. I'm tired off being so under productive. I like to b busy most of the time instead of lying around. Ta MJ
    • chris91672
      chris91672 Maryjo

      Posted

      Hi Mary,

      Yeah not too bad this week, I still get very tired, but that's just post surgury I think. I'm still reducing the Steroids, on 20mg / day now dropping to 15mg next week, so they give me a boost.

      I was always tired during the time I had UC, so I'm looking forward to getting completely off ALL meds so that I can remember what it's like to have normal energy levels again!

      Hope you are OK?

      CW.

  • Maryjo
    Maryjo chris91672

    Posted

    I'm glad to hear of ur continued improvement.  Are u just on the reducing dose from the uc pre surgery.

    Yeah it tiredness will b post surgery stuff plus from how I'll u wer pre surgery so not to put a dampener on it for u .....u will probably b even a bit longer recovering. Yes it will b nice to get energy levels bac !!!

    My husbands niece has it too and she gets remicade for it and she's knackered a lot of the time too. I think the promise of recovering our energy levels would b as big an enticement for surgery than anything .

    I'm not too bad at mo crampy pains and some running to loo....thankfully I do not suffer from mega urgency ....however my weight is dropping slowly .....I think it's the frequency to the toilet...I'm not hanging on to enough of what goes into my mouth plus I am not large eater...would b very bad and miss my lunch days if I'm working and I forget what time it is lol.  I'm making more of an effort now to eat it as I want to b in fit condition for surgery as I'm sure u lose some weight in early post op days.

     My daughter she is going for colonoscopy on Sunday as she has some symptoms of the dreaded disease .

    Has ur stoma shrunk much and did they leave u many cms or inches of a spout(read that one on a forum some place...thought it quaint description lol) 

    i hope u Hav mega improvements in ur recovery this week ....every week can make such a difference esp in energy levels and general well being on way to recovery . MJ

  • aaron67659
    aaron67659 chris91672

    Posted

    It's major surgery so body just needs to heal like with any other surgery.  If you are having bag problems because of your physical lifestyle, surfers invented a wide range of products to hide and protect bags, or so I was told.

     

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.