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Advice Please

Posted , 8 users are following.

2daloo
2daloo

Hi Guys,

Has anybody had the operation to have a colostomy bag fitted? I am getting to the end of my tether with all the flare ups i keep having and am seriously considering having it done. This colitis has put me out of work because of going to the loo so many times. So advise please guys! is it worth having it done and what are the draw backs?

Terry x

0 likes, 40 replies

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  • peter20400
    peter20400 2daloo

    Posted

    Hi folks. So sorry to hear about the dilema you are having. :'( I know what you guys are going through as I was diagnosed with UC last March. I was 21 (now 22) and led a very active life working offshore and travelling, feeding my need for adventure by climbing and mountaineering. All of this stopped as I became ill and dependant on piles of medication. I tried everything but the disease got worse in the long run. By the end of the summer my life had completely changed and along with other symptoms I was going to the toilet 20+ times a day and was 2 stone lighter than my normal weight. Pretty much bed bound. I ended up going through with the illiostomy and to be honest it is one of the best decisions i've ever made. Terrifying at first of course and it's almost impossible to see yourself recovering from being so ill and having such major surgery. As long as you stay strong and positive you will bounce back stronger than ever. 8 months down the line I can say that the benefits greatly outweigh the drawbacks and I doubt i'll be going through with the reversal op. No more surgery or meds for me thankyou! Just fun please. I've just picked up my life where I left off really - although i feel stronger. I've been abroad and climbed at high altitude in the Alps as well as gorgewalking (basically throwing yourself down waterfalls). I'm not going to say you should definatley go through with it because differet people may cope with it in different ways but for me it was the only cure and the only way I could get my life back. I hope this helps your decision guys. smile hang in there!!
    • sillip2007
      sillip2007 peter20400

      Posted

      Hi Peter

      Thank you for sharing your experience with us.

      With regards to surgery, is there any advice that you can offer us before we commit ourselves?

      I know some people have had open surgery and some keyhole.  How long did you spend in hospital and a strange question I know, but I love travelling with my family and we are all rollercoaster mad but have you had any problems with flying?  By that, I mean going through security, problems on board and changing/draining the bag?

      These are the things I tend to be concerned about ironically!

      Many thanks

       

    • peter20400
      peter20400 sillip2007

      Posted

      Hi Sue smile

      Well it's hard to give advice for pre op preparations really in my case as it was more of an emergency procedure but one thing I would mention if youre considering the op is have a good think about whereabouts you want the stoma (depending on what you do). I do a lot of climbing and often carry heavy expedition rucksacks which can be awkward with an ostomy. You can get shields for the stoma but if you get a good place for it then that would be better. I know of a climber that had it placed very low down out of the way of the harness and belts etc. Other than that I guess just mentally prepare yourself for the recovery (and try to stay positive).

      I was already very sick before I had surgery so I was in a very bad way out the other side. Make sure you have aims each day - feed yourself without help - getting dressed yourself etc. This sounds wierd but I remember the first time I washed myself in the shower being a very big deal for me at the time. Make the next task just that little bit harder than the last. Getting all the coffees in for the boys in the ward was a good one. Wont be long before your next aim is driving and running etc. I managed to get out of hospital 8 days after open surgery which was very fast considering what condition i was in but it was only because I pushed myself using the task system.

      I flew out to the swiss alps a few weeks ago. First time flying since surgery and I had the same questions rolling around my head. It was all fine. In terms of security I think they must see quite a few ostomys as there are so many people going through so it wont be a surprise for them. I didnt have issues on the flight either.

      One thing I would mention is try to be prepared and organised with changing the bag and then you dont have to worry about it. smile

      Hope that help ;P

    • sillip2007
      sillip2007 peter20400

      Posted

      Hi Peter

      Thank you for letting me know more and giving me some useful pointers.  I am trying to gather lots of information so that I can ask certain questions when I see my Consultant and Surgeon.

      It is good to see that you are returning to a life that you had before UC and that you have turned what is seen by people as a negative, into a positive.

      I hope that I adopt the same attitude you have and am sure your inspiration, along with many others, will help me get my head in the game and focus on making a good life for myself after surgery.  

      Onwards and upwards.

      Sue x

    • sheila91262
      sheila91262 sillip2007

      Posted

      Hi All,

      I so wish I had found these posts when my son was so ill that they said he might need surgery in the next few days. The doctors and surgeons only talked about the process not the end result. Imagining how life would be was impossible and scary. Our problem was that after going straight to severe UC my son felt that after only a few months of meds he thought that he needed more time to try and get the chance for remission and maybe something had gone wrong with the doseages and types of meds etc. It takes a while to digest that a third of all IBD cases go straight to serious surgery. When he was told by radiologist that he was likely to lose his bowel in days it came as a huge blow, as I'm sure you can understand. Now in retrospect he was starving, in masses of pain and constantly going to the toilet or losing blood, unable to eat and on iVs for meds and liquids. If you have never even had a filling it becomes a painful life of misery. The changes are so huge it seems so difficult to comprehend and impossible to believe that life can be normal again let alone with a bag!

      However when the surgery is just a memory and changing or emptying the bag is second nature and quick, it's easier than continuing to take a shed load of pills, suffering pain, coping with the sideeffects of the meds and needing to be near a toilet and worrying about the future,

      Everyone I have read about since who have opted for ileostomy or had it to save their life have said how life has changed for the better. My son has got on with life as normally as possible,occasionally frustrated by the bag because it irritates or needs changing in the night, but enjoying being  pain free and eating and drinking what he wants and enjoys. Not having to rush to the loo is a blessing. He told everyone he knew and no one had a problem with it and they said that seeing him healthy and active again was miraculous! Nobody looks good with a grey complection!

      The large bowel absorbs water and stores waste so we can live without it. The body adapts very well and drinking more liquid is advised. He takes vitamin B supplements as it is meant to help.

      I hope you all find answers, best of luck.

       

  • sharon4660
    sharon4660 2daloo

    Posted

    hi terry, im sharon, just joined, i had symptoms for somtime back in the late 80`s u fortunutly became so desperatly ill that medication was no longer an option, and had to have the opp, but i have to say ive never felt so well since having it done, of corse a dont like it but it saved my life and thats more important, and i now work full time as a mental healoth support worker, obviously i keep supplys in my siutcase as i do sleeps, but please dont be fearful, theres loads of help n support outn there if you need it , im in better shape than ever and had my opp in 1992 and no problems since, lifes gud,hope that helpswink x
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