big decision to make... advice please!

have now been on my supposed 'wonder drug' prucalopride for 2 weeks.. it's sort of working but only taking the edge off things to be honest. I'm still struggling to eat a normal diet and am distended, bloated, nauseous etc. Although am 'going' a little more.. and not reliant on laxatives the way I was. It also gives me a low grade headache most of the time..

My consultant is saying to give it 4 more weeks and make a decision about having the ileo put back permanently. I honestly do not know what to do and am going round and round in circles. I feel like I'm living life at 50-60% and will never compete in my sport again the way I currently feel. It's impossible to eat normally and fuel my body to do any proper training. I sit and stare at restaurant menus and pray they have some white fish on the menu as that's pretty much all I can tolerate. I feel distended, bloated and sick most of the time and have to eat VERY carefully or I suffer big time.

I read about others on here who have things much worse than I do, and what I'm dealing with seems trivial in comparison. But I dont' feel I have the quality of life that I want.

Before all this kicked off I was training for an Ironman triathlon (but never got to do it :-( ) and have been an athlete all my life, so this is all really frustrating. When I had the temporary ileo I ran a 10km race only 8 weeks after surgery.. I couldn't do that at the moment.

So... do I wait a bit longer and see how it pans out? or bimble along living life at 50% and accept this is how things are now? or make the MASSIVE decision and have the ileo put back? what if it doens't work??

does anyone know if people compete in marathons or even Ironman triathlons with an ileo?? is it possible to train properly to a high level?

My consultant is happy to do it. When he reversed it last time he said 'if I told you that it couldn't be reversed how would you feel?' and I distinctly remember saying 'it's a minor inconvenience to my life'... I wish I'd never bothered!

Does anyone know if it could be done as a loop, then if I feel better with it.. to have it converted to an end ileo? I know I felt better with it before, but wonder if it's too soon to make the decision to go back to it.

I'm coming up to a year anniversary of the peritonitis/emergency surgery.

Sorry to moan on, but I feel like my head is going to pop! it's consuming my every waking thought. What would YOU do????
Thanks xxxxx

Hi Suebear... thanks for replying.. I still have half my colon and my surgeon isn't a fan of kpouch (we only have one surgeon in the UK who does them). Total colectomy with or without jpouch has never been discussed to be honest - so in answer to your question I'm not sure.. I guess that's something to ask. They seem more keen to just put the bag back since I got on so well with it last time. No-one knows why I have this problem as I was warned to expect the opposite. Seemingly the colonic dysmotility has come about from the surgery or the peritonitis in the first place.. very frustrating.

Hi Sarah,

I just know I have suffered with constipation for a long time.  I am scheduled to have a total colectomy next week, June 2nd; yikes!  However, I am ready.  Like you, I have dealt with this for soooo long and I feel I cannot eat a lot of normal meals either due to me feeling bad, distended, and bloated.  I think a few weeks ago, I was like, if I need a bag; I would go for it just b/c I am just ready for my quality of life to improve.  I am ready to regain the strength and energy to do things again.  I guess what I am saying is I would do if I knew I would feel better.  I wish you the best of luck!!!

To answer your question of what would you do?

I'd say a huge GO FOR IT and give the ostomy another try if it worked well for you before. You sound MISERABLE!!!

thanks for the advice everyone ) really appreciate it. Ring of fire you sound like an inspiration! most people would kill for a 10km time of 39.28 without an ostomy! good on you! I had the bag for 3 months before and aside from a few leaks got on just fine with it. A few weeks ago I was desperate and would have had it done there and there.. the new drug is helping with the motility a little bit.. but I'm trying to figure out if it's enough. Thanks for the link enigma will take a look at that.

I think the thing that makes me feel confused is that I'm functioning on a basic level and not on death's door anymore.. managing to walk my dog etc, so it's down to a choice.. live like this forever, or take the plunge. Two nights ago I had a dream that I gave myself a stoma with a penknife... showed it to my surgeon who said 'that's not a bad job'.. ! shows you where my head is right now...

It is a hard decision, but it sounds like you have put a lot of thought into it. No, there are no guarantees that the results of any surgery are going to be perfect, but you have to trust in your surgeon and have faith that you can make it through.

I am very, very active. I haven't done a marathon, but have done several 10K runs and am an avid trail runner. I had surgery 6 months ago, and though I am not back to running yet, I fully plan to be soon. For me it is just the fact that my body took about four months to heal (instead of the standard 8 weeks) and so my muscles got very weak. I am just being cautious and easing back into things. I am doing speed walking now. I am not going to let my ileo stop me from anything. I will be running, rock climbing, trail running and climbing peaks soon. I am already snowboarding and backpacking again. Where there is a will there is a way, and an ileo should make you feel so much better. No more pain!!!

It sounds like your quality of life is very poor, and I am not sure why you would not want to give the surgery a go. Yes, the risks are there, but most complications can be worked out.

My quality of life was bad with UC. Lots of pain, bloating, bleeding and urgency. Even the times I thought I was doing pretty good and in "remission", I now see were way worse than anything I have gone through with surgery or my appliance. It is amazing how grim one's "normal" can become. And then there were the side effects of Remicade. I could barely walk while on that stuff. You get to a point where you say enough is enough, I am going for surgery and hoping for the best. In my case, having permanent ileostomy surgery has been one of the best decisions I ever made.

thank you all for your lovely replies and kinds words! this site is FAB! you're all SO supportive.. thank you thank you thank you.

don't you find that most people view the ileo as 'the end of the world'???... even friends who are GP's say 'oh you dont' want that'... yet I know I felt better when I had it than I do now. I don't think you know unless you've lived with the misery and know what it can be like with the bag! I would see it as a choice for a better quality of life - to be able to eat what I want and not to have to rely on a horrible medication (which is only just licenced and I have concerns over it's safety) and to hopefully be able to train to the level I want. I dont' have pain as such (not in the UC or crohns way) it's more bloating, very uncomfortable and sick - and I guess that's the reason I feel my problems are more trivial.. mind you I didn't really have pain when I (unknowingly) had an abscess on my colon and managed to do a half ironman triathlon! although I do seem to have a bit of a low grade period pain feeling most of the time.. just a mild ache really. It's the bloating, distention, constipation and being so so so uncomfortable that's the issue really.. I feel so much better when I've had some bowel prep laxatives... ugh!

the prucalopride is making a slight improvement and I'm trying to figure out if it's enough of an improvement. Ring of Fire, if I felt 30-40% like you did, it would be a no brainer and I'd be booking myself in for surgery tomorrow.. but as I'm sort of 50% I just dont know. I think I've got used to living with it and you find ways of coping and working round it - but like blueheron says (love your blog btw!) I think i'm getting used to a new sort of 'normal' and whilst I feel okish some of the time.. I've lived like this for 8 months since the reversal after being told I'd be back to normal... but i'm not.

I keep waiting to feel better and not sure when it's going to happen.... will give it a few more weeks on the prucalopride and make a decision. 13th of June is the anniversary of the start of the whole thing, so that might be a fitting date to see the surgeon and discuss it..

thanks again folks - really appreciate your kindness and support. (ps ring of fire.. where are you in the UK? what do your running mates make of your ileo?) xx

I know many doctors that think it's the end of the world...when in fact, from many patients point of view, it's just the beginning!

Don't diminish your pain...we all have had our struggles to regain a quality of life, and each reason or cause IS different, but not easier than another persons! Stay Strong:)

I've made an appointment to see my original surgeon on 8th June.. have also spoken to my old stoma nurse and she agrees with me and has reinforced how I'm feeling to the surgeon. Am very scared but sort of hopeful if you know what I mean... off on a little holiday now, so will update when I've seen him. Thank you all so much for your support xxx

Are you his first patient he will be doing this for? Might it be better to have a surgeon who has reversed a reversal? I assume he has he convinced you that he is not concerned with performing this procedure and you have total confidence in him. I'm just raising the question based on your post as that would be something I would want to be sure of. It will be so good when it is all over with and you feel much better.

Is he removing the rest of your colon or just doing another ileo? Reversing a reversal isn't any different than regular ileostomy surgery and he should be able to use the same site (or now's the time to ask if it can be moved to a better spot!). It sounds like he feels worse about this outcome than you do...but honestly, in my opinion, quality of life is more important!

I've actually had a reversal and within months of it I called my GI and Surgeon for another one...they both chuckled because they knew I'd make that decision, but they let ME make it. For me that was the part where I knew I'd accepted my 'new' way of going and would be okay with it for the long term.

Just think how good it will feel in a few months when you can get back to your Triathlon training!!!