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I've Hit Rock Bottom

Posted , 8 users are following.

Darasdad1
Darasdad1

After battling UC for 3 years I'm at the end of the convential drugs road. A combination of Pentasa enemas, Prednisolone suppositories, Salofalk granules and Azathioprine tablets kept things under control until June when I was debilitated with a Flare Up. I thought I was dying. After a course of oral steroids things improved until a month ago and things are now worse despite further steroids. The Consultant is leading me towards surgery or Infliximab treatment which is new territory. Clearly I'm anxious about either and wondered if anyone could offer advice.

0 likes, 10 replies

10 Replies

  • rachelle52846
    rachelle52846 Darasdad1

    Posted

    Hi there I have had uc for 11 years had a flare when I was 7 months pregnant and continued every day for 9 months over 10 times a day running to the loo it was a living nightmare and I was so ill I was the same tried all the drugs nothing was working they decided that infliximab wouldn't be no better and by then I was done with taking all these drugs I went to hospital which I knew once I went in I wasn't coming out for a while which was 16 days they put me on iv steroids for 1 week iron drips and other drips to get my strength up ready for surgery I had an illestomy on the 15th sept this year I have been home for 2 1/2 weeks now and getting my life back its scary and different with a bag but it's not to be feared that (was the best advice I had) the stoma is your friend mine I have named tinka ;-) it's still going to be a long journey with 2 more ops over the next year or so but I feel so much better no more broken 2 hours sleep due to the toilet sitch now having 7/8 hours which is amazing any more questions let me know I'm off shopping now with the hubs and my son something which used to be such a challenge ️xx
  • 2daloo
    2daloo Darasdad1

    Posted

    Hi Darasdad

    Are you an ex smoker? I will try and keep this short. I had packed up smoking for 2 years and deveploped UC and after 18 months of tablets, steroids, etc and having a realy bad time with UC so much so it actually put me out of work. Who wants to employ someone who's on the loo 20 times a day it just not practical. So in one of my dark momentsi started to research online the conection between smoking and UC. Well i could not believe the link google "can smoking cure colitis" and see for yourself. Now i am not going to say start smoking because we all know its no good for you, but i am now living proof that this works. I started smoking again on the 4th of May 2015 and was back at work on the 26th of July. Its unbeliveable. The UC almost instantly started to go away, no more night time visits to the loo and my visits went from 20 a day to single figures within a week i said to myself that if i can get down to 4 to 6 times a day im going back to work and i did. Reseach youself and next time when you see your consultant ask him about the link with smoking and UC. And yes i know that lung cancer is not fun but i was at the end of my tether being unemployable and having 20 visits a day and no life. Please make up your own mind on this subject as i do not wish to encourage smoking but at the time it seemed like the best option for me.

    Thanks Terry.

    • Darasdad1
      Darasdad1 2daloo

      Posted

      Thanks Terry. I am an occasional but part time smoker. I did stop working early but we are able to live ok. There's no way I could hold down a job at present. 
  • sheila91262
    sheila91262 Darasdad1

    Posted

    Hi, I'm sorry for your pain. I have written at length about my son and his battle with UC.  He had an ileostomy in Dec 13 after being hospitalised and v ill and on infliximab. He was under weight and still losing, anaemic and the meds did not help.

    He had a stoma for 18 months and then a reversal since July.

    He  has a normal life and is disease free. It felt difficult at first having had surgery to remove his colon but it meant he was able to control his life again and be out of pain, able to work and socialise without fear of losing control and no more pain and using loads of meds. It is a big change having surgery but it saved his life and was a final resort but being free from UC is huge. Now he has no bag externally as he has an internal pouch formed from his small intestine and he controls toilet going using his muscles. He has 3 visits a day to empty his j pouch and is able to sleep all night with no accidents. He is very lucky, never thought I'd ever say that!, and he is grateful that he can do all the things he used to do! he goes to the gym, he has gained weight and regained muscle, he swims, goes on holiday etc. He has a large abdominal scar as he had a perforation so surgery was emergency, but who cares, there are worse things to bare.

    Surgery can be an option to remove the disease, don't be scared, be informed and ask lots of questions. I have mentioned some tips on here about hospital choices and procedures. There are also loads of posts by others who have been forced into accepting surgery on here, all have said that it was worth it for the freedom and lack of disease etc. I wish you well, I wish we had had the information 20 months ago that we have now. To see my son looking fit and healthy again after such a difficult time is just as good as winning the lottery and that is no exageration!

    Good luck to everyone.

  • rob96807
    rob96807 Darasdad1

    Posted

    Sorry to hear that. Although flares suck, it does not sound like you are at the end of the road as far as treatment goes. From my experiences infliximab worked better than any of the other drugs you mentioned by a long shot and entyvio is way better than infliximab.

    I would ask about entyvio. I am surprised that is not the standard recommendation for severe cases. It is a far more advanced drug and has less side effects.

    • Darasdad1
      Darasdad1 rob96807

      Posted

      Many thanks Rob. I'll certainly raise this with the Consultant. Take care Chris
    • Darasdad1
      Darasdad1 sheila91262

      Posted

      Thank you so much for asking. Unfortunately, the UC turned very severe and following a flexi-sig (awful images), an infusion of  Infliximab without effect, a further flexi-sig to confirm the situation and various other tests to rule out other things I've had an operation to remove my colon. I'm now home and mending and working with a Stoma. The surgery took 5 hours and recovery was tough. I feel relieved because I was locked in a living hell! Lots of UC sufferers avoid this by choice or design however in my case I feel the decision to undergo surgery a correct one. Take care Chris
    • sheila91262
      sheila91262 Darasdad1

      Posted

      Hi Chris, Glad to hear from you. I am glad you feel surgery has helped. It is a difficult thing to get your head around, major surgery, long and painful recovery, a whole new process to get used to. But when the scars have healed and the pain from movement have subsided then the lack of bloody stools, the absence of griping, gripping urgent pains and horrid diarrhoea makes life so much easier. My son was so grateful that the disease, pain, drugs and side effects had all gone that the rest seemed ok. He is an athlete and loves to eat and play sport so being able to go back to normal food was wonderful. The only thing he didn't or couldn't do was play football as he didn't want the contact. He still managed to throw himself around the cricket pitch, just was careful how he landed!

      I will mention that he developed a DVT in his leg 28 days after surgery, as he was lolsent home from hospital without blood thinners. He was given them in hospital but they did not recognise that IBD sufferers are  high risk for blood clots. He was very anaemic, weak, very underweight and still immuno suppressed from large quantities of steroids etc so not particularly mobile. His DVT was life changing and he is still recovering from the scarring in his leg. Hope you were sent home with a course of blood thinners such as heparin or warfarin, maybe for up to 3 months post surgery.

      The good news Rob in now fit, strong and has replaced his lost weight and muscle. He had the j pouch surgery 12 months after the ileostomy, is it something you have considered?

      Good luck in your progress, the body adapts and heals, thank goodness for modern science and medicine. We feel lucky.lol

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