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15 years with a pouch, thinking of going back to a stoma...

Posted , 5 users are following.

alison23639
alison23639

hello, I am 44, I had a total colectomy in 2003, after living with colitis for 5 years. Its was pretty bad and in the end I had no choice but to have the thing removed. I had the 2 part surgery , had a stomas for just 3 months and then the pouch. I was told by my surgeon that everything would be much better once i had the pouch. 12 years on and i have nothing but pain. I am constnatly battling pouchitis, I dont sleep at nights as it regularly gets me up 4 or 5 times. I can nver seem to empty it and the anastomosis, the exit, is always, always very sore. Sometimes so sore i cant walk. I have had more creams and potions than you can shake a stick at. My backside feels like a very ragged rag indeed. Now I am starting to wonder if its time to give up and go back to having a stoma, I am not sure if it is even possible. When i look back i seem to remember having the stoma as not being a very big deal I could manage cleaning and changing it quite well. And I actually felt well for the first time in years. I remember the stoma itself didnt hurt but i was recovering from surgery so maybe that was a distraction. My husband thinks I am looking at it with rose coloured spectacles, is he right, I dont know. I work I have kids I am very tired, basically what I am asking, has anyone gone back to a stoma. Is it the solution to sleepless nights and daily pain. I should say i had a serious problem with pain killer addiction so changing pain killers isnt really an option for me anymore, I dont trust my self to take anything stronger than paracetamol these days. Whats the reality of living with a stoma, I need some real life experience please, i just cant carry onlike this much longer.

1 like, 12 replies

12 Replies

  • dawn50760
    dawn50760 alison23639

    Posted

    Hiya Alison I'vebeen lliving with a stoma for 39 years now i had it when i was 11 I'm 50 this yr .....life is good had very few problems over the years and cannot imagine life before now believe me if it takes the pain and everything else away its worth it x

    • Maryjo
      Maryjo dawn50760

      Posted

      Hi Dawn... I am due surgery shortly..ileostomy...just wondering do u have much problem with the dehydration or lack of sodium MJ
    • dawn50760
      dawn50760 Maryjo

      Posted

      Hi Maryjo the only time i have really suffered from dehydration is when i have been ill but otherwise no aslong as u keep ur fluids up ur fine 😊
    • Maryjo
      Maryjo dawn50760

      Posted

      Thank u. Yeah cramps are a bummer at times with uc and also the fatigue. Can't say I'm looking forward to actual surgery as I hate not being in control of my body if u no what I mean. Have u any tips or hints that would b useful knowing ...I have read so much on them my brain is saturated but still have brain room for ur expert knowledge MJ
    • dawn50760
      dawn50760 Maryjo

      Posted

      Believe me u wil b fine just watch what you eat at the beginning as you Can get lots of gas you learn what to eat and what to leave well alone ......coconut,nuts,mushrooms,sweet corn,broccoli is a big no no for me along with certain Chinese food as its blocked my stoma in the past so i learnt the hard way ....good luck MaryJo you wil be fine xxx
    • Maryjo
      Maryjo dawn50760

      Posted

      Dawn many thanks for that...much appreciated. MJ x
  • Jaccs
    Jaccs alison23639

    Posted

    Hi Alison

    sorry to hear of your suffering, have you tried speaking to someone at the colostomyassociation.org.uk, they used to be very helpful and might even know of a support group in your area, or even the bladderandbowelfoundation.org. Just finding someone who has experienced the same as you, might be helpful. Hope this helps, good luck.

    • alison23639
      alison23639 Jaccs

      Posted

      Thank you Jaccs. I think I definitely need to speak to more people about this. It has benn pretty grim. I will check out the groups you mentioned. Everyone on here is being very lovely and supportive, surely there is a down side to opting for the ileostomy again, or is it really the best thing to do? I have a lot of thinking and research to do I think!
  • Maryjo
    Maryjo alison23639

    Posted

    Hi Alison...sorry to hear about ur difficulties . I'm to have surgery soon and my surgeon has recommended the ileostomy as he feels my age 60 plus the life span of a jpouch is not forever. He said given choice he would have ileostomy. Don't no whether he is trying to humour me or he has seen so many problems over the years with them makes him say that.  I actually hav done mega research re both and I think the ileostomy is the better choice for me and I have read that lots of people do go from j pouch to it.  I actually have lot fatigue from uc and I feel if I get my mo jo back I will be delighted as it is rather debilitating never mind the cramps...bleeding fairly minimal. If u feel it will make ur life quality better I would DEFINETLY go for it. MJ
  • alison23639
    alison23639

    Posted

    Hi Dawn and maryjo, thank you for your very kind replies, Its the first time I have asked anyone about this sort of thing since I met a man in the hospital the day before my pouch surgery. He wasnt very happy and his partner was having a very difficult time accepting the stoma. They were in seperate beds. This has very much clouded everything. Its great to hear that you have been living with an ileostomy for such a long time a\nd you seem pretty together. This fills me with confidence. Does it really take the pain away? I find it very difficult to imagine life without pain. MaryJo It is very daunting to go in for this kind of surgery. I know that with the ileostomy I did feel very much in control of my body after years of panic rushes to the bathroom. It was a relief. I do hope your op goes well. The stoma nurse team are usually fantastic, they are great support. Good luck!

    Dawn like Maryjo if you have any useful tips about life with a stoma, I am sure you have a wealth of real knowledge that you just cant get on the web, it would be great to hear.

    • dawn50760
      dawn50760 alison23639

      Posted

      Hiya Alison it really does take the pain away :-) and life is pretty much normal as any life can be,iI'vehad issues with men in the past who ccouldn't accept the bag but they were not worth the time of day tbh...my husband has never once complained even when it has leaked all over him in bed we have just laughed together :-) , any questions just ask me I'm willing to answer and try help you in anyway I can .The stoma care nurses are all usually lovely and will help with any issues and give good advice x
    • Maryjo
      Maryjo alison23639

      Posted

      I feel u need to read as much as possible and learn as much about it as possible b4hand, as it gives you the knowledge and skills to deal with it. As with most things in life where it concerns change...a positive attitude can get u through a lot of things. Hope I'm saying that after op lol. Being miserable and pessimistic will not make things better for u or anyone else and there are always worse things in life . I have read some forums where some people are really in a very poor state of mind re stomps but maybe those people also suffer with depression. 

      Alison I actually do not suffer from the urgency that some people suffer luckily....I did in past but rarely now. Another thing possibly in my favour I am retired nurse and midwife so handling stoma should not be too bad. Have you watched any of the stuff and people on utube dealing with their ileostomies. They are fabulous. I have learned so much from them and also their attitudes towards stomas. Definetly well worth watching. Yeah I believe stoma team in hospital I'm going to are great. Don't no if u can mention names of places here so will not chance it at mo in case this has to go for checking . MJ x

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