Back where I started!

Hi I was diagnosed with Ulcerative Colitis some 34 years ago. Had all the normal treatments and regular stays in hospital. Then 6 years ago had a emergency total colectomy. Left hospital with a ileostomy . At the time it was the best thing that happened as at last I had some control over my bowels. A year later and I started to pass a lot of blood with pain in what was left of my anus and rectum. I had a endoscope that had to be stopped because of the amount of pain and blood I was loosing. The bed and I was covered in blood. A week later I was diagnosed with Crohns and had to have my Anus and Rectum removed. A year later and the pain never went away but I lost 15 k in weight. Had a referral to St Marks and was admitted on my first appointment a month later and I was on PNT food. Another month passed and I had surgery to reconstruct my stoma and lift my stomach out of my pelvis. Regular follow-ups and then my soma started to stop working. Had tablets to take care of the Crohns but the pain got worse and worse. 18 months later I had a op to remove a hernia, they did not find a hernia but the wound became very infected and I developed fistulas around the stoma. The infection became such that I kept passing out and would wake up a few days later in a hospital. Back home and I passed out, all quite normal, and woke up a few days later in Brighton Hospital who said I had an abscess behind my stoma and put me on antibiotics and sent me home. A week later I had a out-patients appointment at St Marks . I remember waiting in the coffee shop to be served as I was early for my appointment 3 days later I woke up in bed still at St Marks ' I was so lucky to be at St Marks'. I told them I had an abscess behind my stoma and they put a drain in. Unfortunately the drain did not drain the abscess but poo was coming out of the drain. After more investigations it was found that Brighton had got the diagnosis wrong and I had a hole in my small bowel that was filling my stomach up with poo. They could not operate as It had become so infected. A month later and my stoma was moved from one side of my tummy to the other. The infection was cleared up but since I am left with a stoma that works for a while then stops, my stomach swells up until the stoma suddenly clears and the poo erupts out at such a rate it forces the bag off and goes everywhere. And that's where I am at the moment. I am incontinent, live with chronic pain and chronic fatigue, caused by the scar tissue, adhesions and a slight twist in my ileo. So I'm back where I started with no control over my bowels but with a lot more problems. As for the Crohns or Colitis well it has been changed to Crohns/Colitis. If it was not for the fantastic guys and the work at St Marks I would not be here today. I owe them my life.

9 Replies

  • What an incredibly awful time you have had. I lost count of the number of operations you have had as I read it! I do hope you can manage to get out and about, despite the difficulties.

  • I'm just so glad it is me that is going through it and not my children, even though they are in there 20s I don't think I could cope if they had it instead of me. I'm sure there are lots of us who feel the same.

  • I've been suffering from severe ulcerative colitis for almost 4 years now and in a couple days I'm going to have a total colectomy, even so I just can't mensurate how to tolerate such suffering you've just described. Wish I could offer a hug brother. Know that I'm thinking on you and wishing all the best with your life.

    This is a song I like to hear in difficult times. May you have somebody close to you so you can lean on. Sometimes that's all we need.

  • I love that tune...

  • Hope all goes well for you with your operation and your recovery goes well. Take care 😁

  • Thank you, it's amazing what the body can go through. We all have to play with the cards that we have been dealt with and you never knows what you can cope with until it happens. I truly believe the worse part is the regular PIP interrogation and having to prove to the guys with the clipboards that it all has a effect on my ability to live a 'normal' life.

  • You've had such an awful time and it always amazes me where we find the strength to keep going in such times and often we don't do it for ourselves but for those we love. I'm so sorry you've had such a horrible time, I've got Crohn's but had UC 26 years ago. I have a stoma, had abcess too around stoma. I'm taking Humira at moment which is helping me. Oh if only they could find a cure!!! And my youngest son who is 26 has problems with his bowel now. It's scares me that he may get it!! I truly hope things get better for you soon 😁🙏🏻

  • Thank you, I hope you also get better soon. its horrible when ones children get a stomach problem we automatically think the worse . I also hope they never end up in the same place as we are.

  • Thank you for sharing your story. You are a warrior, as we all are for having to survive with such difficulties of disease. My heart goes out to you, when I read all that you have been through, its just so much to endure, but you keep going and keep the hope! Wishing you all the best, and hoping your doctors can get you fixed up soon, so you can regain control.

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