Immunotherapy induced ulcerative colitis

Hi Hayley. 

I hope your husband has recovered well from the colitis. 

Yes. I had 4 months of immunotherapy and this caused me to be in hospital for 2 weeks on the first bout of colitis the just under 2 weeks on the second. I think a few months apart. I didn't realise how serious it was until the consultant explained to me. 

I was put on high doses of steroids  to keep the colitis at bay which it did, and it took me a year or more to wean my self off of the steroids and keep everything controlled and stop the colitis.  The whole ordeal was not very nice and took all dignity away at the time but it was all sorted. 

Now I'm on a different treatment as immunotherapy like your husband didn't work for me.

I'm on a targeted therapy for the last year I would say. This seems to be working its job. A few side effects but ones I can deal with. 

Hope this helps a bit. 

Anything else please ask as some times its difficult to find people having the same experiences. And once you do it's sometimes helpful. 

Hi thank you for replying. My husband is still poorly with it the steroids didn't work for him so he had an infusion of infliximab but we don't know if this is working yet. My husband has bowel cancer but I came to this forum as I am aware more people seem to be on immunotherapy for melanoma than bowel cancer. We have been told he won't be having immunotherapy again and they don't have a plan in place as yet as they said they want to deal with one problem at once colitis being the 1st. We also didn't realise how serious it was either. Our local hospital sent him home twice with laxatives in the past 2 weeks and told him to take paracetamol for the pain yet he wasn't even constipated its diarrhoea... they were treating him for overflow it was only the 3rd admission where I demanded he has a CT scan as we were not convinced it was overflow they did the CT scan then colonoscopy and basic told us he is lucky to be alive after they had the cheek to send him home twice without properly investigating.

Hi. 

At least now he is in the right care.  Yes I agree hospitals and doctors in my experience also are not the best people . I find that only my consultants and my care nurses are the best people at resolving issues.  I by pass doctors these days and general hospitals and go straight to my nurses. 

I was on the iv when I was In  hospital every day for about 2 weeks and it progressively sorted me out then once under control was let out and had the oral steroids. As u weaned off them to lower doses it did flare up again and then started the treatment again . This was about a year ago. 

I thought it was just normal diaherea and didn't tell any one. It was only because I had a telephone appointment from consultant as I did monthly and only when asked if everything was OK, I said yes but just a bit of diaherea.  I was told to go to hospital straight away. 

So anything that doesn't seem right, I would just get checked out via consultant for your husband. 

Fingers crossed  for your husband recovering. 

We are going to be transferring care to another hospital as my husband hasn't had a great experience from the start they misdiagnosed him 3 times until they did a ct scan on the 5th a&e visit when they found the cancer. The only person that has actually listened to him is the surgeon that did the bowel resection even the CNS when we rang her numerous times about the diarrhoea kept telling him to just keep hydrated and when we called on a Friday afternoon we were told to hang on till Monday as the unit closes early on a Friday!! So we went to a&e and had a 19 hour wait couldn't make this stuff up. We have a meeting with the IBD team tomorrow so hopefully find out how things will be going forward.