I’m trying to cut an extremly long 7 year story short so if you need to ask any questions feel free.
Anyway, I have had progressively worse IBS C/D for around abouts 8 years now and I have spent almost the entire of those 8 years trying to find ways to stop it from getting in the way of me having a normal life but so far nothing has worked.
Now when I say I have been trying for 8 years I mean with GP’s, Gastroentorologists and IBS sufferers through forums on the internet to no avail and my treatments have ranged from colestyramine, lactulose, down to peppermint, CBT and bio-feedback. After all this time, the team leader of the Gastro team in my Local hospital (Amersham/Wycombe) has said explicitly that she can thing of no other treatments for me, however when I mentioned that other IBS sufferers who hadn’t responded to treatment had gotten a Colostomy performed and it improved their lives greatly her comments were "No surgeon in the UK will perform a Colostomy for IBS" "Any surgeon who does is un-ethical" and finally "It will make your life worse".
Now after doing a little research on the internet about IBS sufferers who have had Ostomies I managed to find a good few who were in the position I am currently in and who managed to have the surgery performed, and have never regretted it done, but firstly I am wondering if any here on these forums have had their Ostomies because of IBS. Why they had it performed, and how their lives have been since they had it performed, and also if I have your permission to show my Gastroentorologist your comments.
The reason why I am doing this is because apart from the aforementioned comments the team leader made, she was also very rude, accused me of being close minded to non-surgical procedures even though I said a few times I am willing to try anything to avoid surgery but surgery "should" be an option if all else fails and virtually laughed at me when I mentioned a Colostomy to begin with. This led me to make a complaint about the way I was treated to the local NHS Trust and they have since came back to me basically white washing everything she said with a half arsed apology thrown in somewhere at the end.
My IBS has ruled my life for 8 years, I have lost 3 jobs 3 long term partners and missed out on a lot of happy memories because of it. The only way I can even make sure to actually be able to make any pre-determined appointments like hospital appointments is if I take Loperamide the night before and then in the morning which of course leads me to have an even more severe attack a day or two later. I’ve done a lot of research on living with a stoma and while I will never know exactly what it is like and what a person goes through living with a stoma I do feel that this is the final option for me to lead a normal life.
Now I am stuck in a situation where I can either carry on fighting the system through email by complaining to the regional complaints people (can’t remember their exact name right now) or by travelling a long distance to garner a second opinion which itself is less simple than it sounds. When someone has an appointment the most they worry about is getting there on time. For me an appointment means a whole week of anxiety that the Loperamide may not work this time or I may have an attack before I leave and not have enough time for it to subside and miss my appointment. I told the Gastro this but she still thought her only option was to send me to the centre of London to see an IBS researcher, a journey she knows I can’t take.
This has been a whole big mess, she tells me there is nothing she can do for me but a Colostomy isn’t an option. Even in the NICE guidelines on IBS it states that in a small proportion of IBS sufferers 2%< that don’t respond to treatment and that surgery is an option but it is her "personal" opinion that living with a stoma is a nightmare only inflicted on those that "must" have it.
I would love to hear everyone’s thoughts on this whole situation and I am a very open question so feel free to ask any questions.
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