Hi, I have had colitis for nearly 20 years, it isn't fun. I have a pouch for nearly 10 years. It had never functioned properly. I was on the forum a few month ago asking for info regarding g going back to a stoma. After lots of faffing about my surgeon agreed to the surgery if I tried one last thing. I saw the Gastro team who put me on high doses of metronidazole and ciprofloxacin. To be followed by a course of VSL3, 4 sachets per day. The antibiotics made me feel dreadful and when it came to the VSL, I couldn't find it anywhere. Has anyone else been able to locate a supply. I think there has been manufacturing issue. Has VSL worked for anyone. Do you have to take it on a permanent basis. I have only been able to locate small amounts so haven't really been able to fulfill the second part of my treatment. The other option was permanent anti biotic treatment for chronic relapsing pouches. Has any one done this. I have to say I am very anxious about that prospect, incantation be good to become resistant to antibiotic treatment. Maybe I am misunderstanding. Any advice or experience would be greatly appreciated. I am seeing the Gastro team on tuesday. I want to sleep at night and not have anymore piano. I am not sure what they are offering is going to help. Thanks for taking the time to read, sorry its a bit disjointed, I am very tired indeed.
Hi, Alison, sorry you have problems. Where are you in the Uk?
VSL is available online at Amazon.
Have you been to any different hospitals for info. There has been progress in pouch surgery. Have they considered amending your surgery?
Sheila
Hi sheila
I am in London. Not a single pharmacy can order it. I know its on amazon but I can't afford 30 sachets a week, also not sure if they store it in a fridge.
How could they amend my pouch. For me the problem has always been the exit point, lacerations, abscess raw skin. It all feels very ragged after 10 years of punishment. I have been to Whittington and St Marks. It feels like they are just kicking my problem down the road, hoping I will stop complaining or just give up and put up with having no life.
Are you currently at St Marks?, along with John Radcliffe Oxford I thought they were the experts in pouch formation. Touch wood my son's J pouch, from JRO, has been great since being connected in July and long may it last. Was yours ever working well? Are they able to let you have pro bs on prescription?
Hope you get some help.
Based at Whittington, can get prescription just can't find it in the community. I know I had this done a long time ago and medicine moves quickly. Mine has never been good. I hope it works out better for your son
Wish I had stayed near St Marks!