Some advice would be appreciated :(

I originally posted this thread in the IBS section of this forum but haven't received any comments yet. I suppose in hindsight I should have posted here first, so hope I don't get into trouble :S My original post is as follows:

Hey there - I am uncertain whether I have posted in the right section, but in for a penny! Apologies in advance for this long post. Skip to the end if you like - I have a question :)

I was originally diagnosed with IBS twenty-one years ago after suffering with constipation (only) for a good ten years prior. It never went away despite adapting my diet, lifestyle etc. All the things that you are meant to do. I have been to A & E a few times due to being 'backed up' (once for over three week) whereby they just gave me an enema. The times I visited the doctor is more than I can remember and I couldn't help but think that they were labelling me as a hypochondriac. The only things they gave me was laxatives and advice to eat more fibre. So, basically I suffered. A lot.

It wasn't until this year that I had surgery for what was then a suspected gallbladder infection. Long story short, what should have been relatively routine turned out to be a major turning point in my life. They found a few worrying things and managed to resolve some of them however, it was noted that I had a very long descending colon and extensive adhesions despite never having surgery.

So, after a colonoscopy and transit studies tests (amongst others), I have been diagnosed with megacolon, megarectum, slow transit and a rectal prolapse :( My consultant has said that as my colon and rectum are very large (one of the largest he has seen) it has to go. Hopefully, he may be able to save the rectum. I am having biofeedback and he has prescribed Resolor to see how it goes. I also have coloplast enemas to do (which doesn't shift it).

I have three options (which will be decided in March 2014). The first is to remove the colon and attach it to my rectum (pending on how the above goes). The second is an illeostomy with j-pouch (??). The third is complete removal of the colon and rectum and have a stoma.

To be frank, when I was advised what is wrong with me I felt three different emotions. Firstly, I was (and still am) angry that I had been dismissed/ignored by doctors (my consultant is the only one I will trust now as he did actually save my life). I then felt relief. Relief that I am going to be okay and relief that I am now believed. And finally, anxiety - which I suppose is understandable.

I hope that some of you can relate to this post. Much is misunderstood about IBS and the medical profession seem to 'pigeon hole' people.

Which leads me to my question - do any of you fine members have to take Resolor? How are you getting along with it? I have only been taking it for four days and feel like hell (not really doing anything, sickness, dizziness, hot flushes and palpitations).

Also, did you end up getting a different diagnosis from your original IBS? I would be really interested to hear :)

Many thanks for reading :)


Footnote: I am day seven of the Resolor/prucalopride now and am not feeling very well at all. I did manage to 'go', but the side-effects are worsening. I will give my consultant a call in the morning to seek further advice. :(

Sorry, I have also never heard of that drug so I can't help there.

If I were you I would ask your surgeon if there is a way to remove your colon and give you a temporary ileostomy while leaving the option of a reconnection (either j-pouch or rectum) open in the future. This way you will get the colon out and get to test drive an ileostomy before moving on with a bigger surgery (j-pouch construction is a BIG surgery, and connecting the small intestine directly to the rectum is a really tough recovery, particularly since you are already dealing with rectal prolapse etc). A lot of people with a history of severe constipation like you are relieved to have the ileostomy and no longer have to deal with "traditional" BMs and everything that goes along with it. I didn't have the option of keeping my rectum, but I did have an initial surgery that just removed the colon and created an ileostomy (leaving the rectum in place) so that I could decide if I wanted a j-pouch or to make my ileostomy permanent. It bought me a lot of time to make the decision from a more calm/stable/happy place and I'm glad I did it that way, even though it meant I had three surgeries in total instead of two.

Hope this helps.

Welcome Megamama. I'm one of the members who suffered with colonic inertia. I'm sorry that I can't help with your question but I've never heard of the drug you asked about.
I do want to let you know that there is another option, although I don't know if you are a candidate for it or not. It is a sub total colectomy. So rather than removing the entire colon the surgeon left seven inches of the sigmoid and attached it to my rectum. That gives more control over BM urgency.
Please let us know what you and your doctor decide.