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Surgery for Ulcerative Colitis? Is it worth it?

Posted , 9 users are following.

susan4301
susan4301

Is the surgery worth the pain and the ostomy  to get rid of the disease? I need to get it anyway because the medicines failed for me but I was wondering if people who selected to have it think it was worth it. My doctor says you will have to go 4-6 times per day, and idk but that sounds just as bad as colitis to me. Also, the ostomy? Having to change your own crap bag? That sounds terrible! Who would ever ask for this?? Am I misunderstanding? Please tell me what you think. 

BTW I am 14 and have had severe colitis for 9 years and all the medicines have failed for me so I am currently on 60mg of prednisone ;n;

 

1 like, 19 replies

19 Replies

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  • sebtucknott
    sebtucknott susan4301

    Posted

    Hi Susan

    I know it's a bad place to be, I've been there.

    Have you tried anything other than medication?

    I was in the same position as you and decided to try making lifestyle and diet changes before opting for surgery.

    3 years on I feel better than I've ever done in my life and symptom free most of the time.

    I have severe pancolitis (UC) by the way.

    I'm now only on pentasa.

    Let me know if you want any info.

    x

  • ehsan18513
    ehsan18513 susan4301

    Posted

    Have you tried isolating your diet? Mine has been due to yeast in bread or possibly Gluten, even though Gluten tests show negative (which I don't believe in these tests nor expensive professors/specialists). There has also been many reports about contaminated water???
  • ehsan18513
    ehsan18513 susan4301

    Posted

    Also please remember, change of diet may take several weeks to take effect.
  • stewart21177
    stewart21177 susan4301

    Posted

    Hi Susan,

    Did you get my message? biggrin Does it sound reasonable? It's not an instant result, hopefully you system will start to feel calmer.  You begin to feel more 'normal/regular', digestive system will feel better, fingers crossed for you. For me having a doubly incontinent sister, vaccine damage, made me research what I could do to not have to use bags/pads. For me horrifying.

     

  • susan4301
    susan4301

    Posted

    I have already tried to diet and, I have gone gluten free, dairy free, TPN, ensure and just about anything else, but sadly I also had no luck. sad Litterally the only thing that works for me is prednisone and I hate hate hate it. Thanks for the suggestion though. smile
    • susan4301
      susan4301 stewart21177

      Posted

      Oh, at first I didn't really know what you meant. I always drink bottle water because the water where I live has too many chemicals. But I am pretty sure I got messed up from my old apartment had toxic mold in it. (since we found out we moved) But I kinda blame my health issues on the mold problem.
    • stewart21177
      stewart21177 susan4301

      Posted

      Never thought that mood could do that but, I don't see why not. Does you apartment have parts that don't have enough air to it? Hope you get it sorted.
    • sheila91262
      sheila91262 susan4301

      Posted

      Hi Susan, I'm sorry for your condition, it really is terrible disease.

      You may have read my posts regarding my son. He had an emergency ileostomy as he perforated from severe UC whilst in hospital on Infliximab. He had a stoma and mucous fistula and coped v well. He had a reversal, the last surgery being in July and he is so delighted to be normal and healthy again. He has a few scars but goes to the toilet normally and is disease, pain and drug free, a situation he could have only have dreamed of 2 years ago.

      He eats well, exercises whenever he wants to and looks healthy again, which is wonderful. The j pouch surgery was performed at John Radcliffe Hosp Oxford and was excellent. They are the experts along with St Marks London. Surgery was relatively short and recovery was swift.

      My son coped with the stoma bags and having no pain and only taking Asacol for some mucous production from the stump made life much easier. He would have been OK living with the stoma but as the surgery for the reversal to the j pouch was available to him he gave it a go with no regrets. There is loads of info online about the surgeries and some details on here. Please ask questions if you want.

      I wish we could have had some feedback 19 months ago when the emergency ileostomy was forced on him as it all seemed so final and scary. Now he feels that the surgeries were the way to a normal life again and to leave the disease behind. Yes surgery can be onerous and painful but sometimes it is the best way forward. He has no regrets.

      Good luck and keep in touch, you are not alone!!

  • bustergut1
    bustergut1 susan4301

    Posted

    Hi Susan I'm 59yr old female & I'm pretty much in the same situation as you as only prenisolene holds my condition & I've been on them constantly at various dosages for two years. I've tried all the other drugs available some haven't suited me & all haven't worked. I Hate taking prenisolene as my weight has increased & mentally it messes me up. I'm currently trying as a last hope vedolizumab it works by targeting the bowel directly blocking the white blood cells that go to the bowel & then gradually

    dealing with the ones that are there. There is I believe a 50% success rate. You might like to ask your doctors about this drug &

    if it is funded by your local authority.

    You have infusions in hospital( day patient). 3 over space of 6 weeks as induction & then every 8weeks also slowly decreasing your steroids. The vedolizumab takes a lot longer to work & show any results about 3 months from beginning. My next infusion after the induction is 25th August & then 8

    weeks after that. By then I think there will be a better understanding as to whether it's working for me. The doctor said it either won't work & then surgery or if you've had enough & can't cope still will how your colitis is then surgery. I have only heard positive things about people who have had surgery. Whilst a great shock & body changing my colitis is controlling my life & I find that difficult to live with. Good luck on your decisions. Keep in touch x

  • cmcgee1234
    cmcgee1234 susan4301

    Posted

    Hi Susan, i realise that my reply is quite late but i just wanted to asure you that whatever your descision is regarding surgery it is effective and worth it. I am only 16 years of age and when i was only thirteen i had a colectomy and ileostomy, as just like you medicine and diet was not helping . The surgery for me was the only option as another method of using an infusion was a scary prospect as i looked into it the chance rate of it actually working and the side affects where just too dawnting. To be honest i will tell you that the three surgerys i underwent where difficult and i felt down at times but as soon as the first surgery was over  i turned into new person. I was imeadiatly taken off all medication and i felt normall again apart from a bag on my tummy. i was free no pain, no discumfort and no more pills. It was the best decision of my life. 

    please do whatever you feel would be better for you as a person in the future.

    Charlotte xxx

    • rachelle52846
      rachelle52846 cmcgee1234

      Posted

      Hi Charlotte

      I read about your story having a bag I may have to have surgery soon as none of the medications have worked for me but I am so scared any advice would be much appreciated x

    • sheila91262
      sheila91262 rachelle52846

      Posted

      Hi Rachelle, please read my reply to Susan. The surgery can be the end of the disease and there are many out there who have been successfully treated by surgery.

      Good luck.

    • rachelle52846
      rachelle52846 sheila91262

      Posted

      Hi Sheila

      I ended up having a illestomy mid September now and like your son I have my life back just wanted to know how your son coped with the j ouch op then reversal op I know it's going to be a journey and a slow one did he recover well from them ? X

    • sheila91262
      sheila91262 rachelle52846

      Posted

      Hi Rachelle, I'm glad things are going well for you, it is a relief to be rid of the disease.

      Yes  my son is doing very well, I have posted lots on here under j pouch. He had final op in July and is doing as well as he ever could have hoped. he feels back to normal and looks great. He goes to the toilet to empty his bowels about 3 times a day and is fully in control. Such a relief. Ask any questions you like.

      Good luck

       

    • rachelle52846
      rachelle52846 sheila91262

      Posted

      Thank you Sheila I will take a look :-) yes I am looking forward to living again!!

      That's great news that all went well for your son it must be so hard for you all to go through this.. Did he have 3 stage then ? X

    • sheila91262
      sheila91262 rachelle52846

      Posted

      Hi Rachelle.

      He was advised to wait 12 months after healing from ileostomy as he was so unwell with the UC. So after the year they removed the mucous fistula and the last part of the colon but the rectum is left in tact, they formed the pouch from the lower part of small intestine by stapling. The surgery was in the lower part of the first scar, the ileostomy. He healed from that and once they knew that the pouch was completely healed and water tight they scheduled keyhole surgery, approx 3 months after. The second pouch surgery was great and he was able to walk and eat almost straight away. He drove home after 3 or 4 days!

      There are several types of pouch and several types of surgery that is dependent on the patient. Also some hospitals have their own favourite! so it is worth asking questions.

      At JR Oxford they give the patient high energy feed drinks for before the surgery to be taken at home prior to the nil by mouth stage so the recovery is much better, and it worked well.They also give anti bacterial washes and instructions fo the morning before admission to make sure hygeine is good to reduce infection rates. 

      For my son the whole process was met with a positive attitude and was pre arranged so such a contrast to his emergency ileostomy. Much better for the healing in all senses of the word. We have all felt that it was like buying the winning lottery ticket and we still do! And now he is busy enjoying the proceeds.razz

       

    • rachelle52846
      rachelle52846 sheila91262

      Posted

      Hi Sheila

      Thank you for taking the time for all the advice I am so pleased your son is living a normal life health well that is priceless so I get the whole lottery thing it is great to hear that all went well gives me hope and faith for when it is time for me xx

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