My life with an ileostomy from the start

I was diagnosed with Ulcerative Colitis in 2002. It progressed quite quickly and by December 2005 I was virtually housebound because of incontinence. In March 2096 I haemorrhaged and was admitted to hospital. I was given high dose steroids for three weeks in an attempt to get the UC under control but as there was no change a decision was made to proceed with surgery and form a Stoma. My whole colon was removed. The intention was to do a reversal after a couple of months. However tests at the Royal London Hospital revealed that my sphincter muscles were at the lower end of normal and I was advised to wait for a couple of months. In the meantime, after a couple of months of rapid weight loss and extreme lethargy I was re admitted in August 2006 and diagnosed with medically induced (steroids) diabetes. I went on insulin immediately. In December 2006 I visited my Stoma nurse as I had a very painful sore underneath the adhesive part of my Stoma bag. My nurse, bless her, saved my life when she recognised a rare skin condition called Pyoderma Gangrenosum. It was unbelievably painful and I used to sob like a baby every bag change. That went on for 18 months and I was treated with steroid tablets, steroid cream, steroid injections into the wound. Eventually I was given Cyclosporine, an anti-rejection drug which together with the steroids caused artificially high sugar levels which we could not control. I also developed a rare side effect to the immunosuppressant and I had uncontrollably trembling throughout my body. Changing my bag, drinking etc was a nightmare. By this time I was terribly ill and in a wheelchair as I was so weak. I then suffered two bowel blockages three months apart caused by the small bowel getting caught in the four hernias I acquired. On the second one my surgeon took a chance and excised the Pyoderma which thankfully has never come back although I am told there is always the possibility. At this time I also experienced heart problems, liver and kidney problems and the decision was made to perform a panproctocolectomy which involved removal of the rectal stump and anus. Two months after I had crippling joint pains all over my body. After six months of doctors visits, scans and MRIs I was diagnosed with a severe lack of vitamin D. After three injections my body started to slowly recover. Two years ago I had four large and six small hernias repaired with mesh. Since then I haven't had to have any other surgeries and at the moment feel relatively healthy. I have to take ten different medications every day and I'm on insulin four times a day. I welcome any questions. Nothing is too embarrassing!

5 Replies

  • Oh and to cap it all I now suffer with "Painful Diabetic Small Fibre Neuropathy" as a result of the uncontrolled high sugar levels and "Early Background Diaberic Retinopathy" also because of my artificially high sugar levels.

  • Blimey! That's a battle and a half you've won - here's to continued good health!!! Onwards and upwards! :)

  • You have certainly been through the mill. It is amazing what good medical aid can do but I am sure it is your own strength and will that has helped you deal with all that :)

  • Thanks for your good wishes. I won't lie - there were times I thought I had run out of fight. But I'm stubborn and I didn't want to be beaten! It just goes to show us all that we are far stronger than we realise. Good health to you both Helga and Tinarjs. And thank you both for taking the time to read my LONG note and comment!

  • WOW You are a brave soul. Onwards and upwards. You have tremendous courage and an inspiration to me. Most of my family has sugar/diabetes issues. I fought it off with what I thought was healthy diet but my colon and GI can't handle fiber very well. I am a small person so I dont need alot of food. It gets stuck! Now I use a nutribullet and juicer. I understand the housebound due to incontinence all too well.

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