big decision to make... advice please!

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Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 5/24/2011 11:42 AM (GMT -6)   
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
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 5/24/2011 1:58 PM (GMT -6)   
Are you a candidate for a jpouch or a kpouch?

Sue

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 5/24/2011 2:06 PM (GMT -6)   
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.
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 5/24/2011 3:13 PM (GMT -6)   
Sorry you are still dealing with the discomfort sad

to answer your athletic question, YES, you can still train and compete at those levels :-) It may take some time to figure out your body, since we have hydration issues.

I recently met a runner who is at the international competition level and he still competes. Personally, I have NEVER been athletic but I did train and finish a half marathon...and continue running because I LOVE IT. I know I have to be more careful because of my ileo but I know my quality of life is amazing because of it.

I think the key to everyone's decision is their quality of life. Yes, we have to make a difficult decision, but I think you said it best that you are living at 50-60%, and it's not something you sound comfortable with.

If you want to start with another loop ileo...do that. There is no medical reason you cannot. I would also see if you are a candidate for a j-pouch to cover all the 'what if' bases.
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 5/24/2011 4:35 PM (GMT -6)   
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!!!

ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 5/24/2011 4:37 PM (GMT -6)   
Hi ironmum
Im a very keen runner to,i compete in 10ks and half marathons and i run every other day,im 6 months post op now and im nearly up to the same fitness level as i was before my op,i raced lastweek and came in @ 39.28 for a 10k,not my best but im getting there. Once you recover from the op( i stopped running for 2 months) then theres no reason why you cant compete again,i missed running so much and getting back into it gave me such a confidence boost.
The only problem i had was makin sure my bag stuck when running,had a few leaks but got that sorted now.
I was dreading having a stoma,i thought my running days were over but it turned out to be one of the best deciosions i have ever made....
I wish you all the best
leyton

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 5/24/2011 4:58 PM (GMT -6)   
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!!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/24/2011 5:13 PM (GMT -6)   
Ironmum:

Sorry you are in this condition....if you go to the UOAA website and cruise around the forums, I believe you'll find people there with illeos' that run on a daily or "every-other-day" basis.....

I am amazed that they do it...but, I know people locally (near me..met them in person) that swim, run, etc. w/illeos....I'm not going to be that ambitious! Just taking walks, light exercise, dancing, work, and stuff around the house is enough for me....

God Bless you and help you making your decision.

enigma

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/25/2011 12:35 AM (GMT -6)   
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... :-)
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 5/25/2011 1:57 AM (GMT -6)   
I really feel for you ironmum,i know what its like to be missing something you really enjoy.......I personally would love to do a ironman but my swimming is terrible but maybe one day.
You say your getting by on 50%, i can agree with you on that too,i was more like 30/40%, just think of all that energy thats waiting to burst out of you,you still have goals which is another positive.
You have obviously been through alot already and i think maybe you should consider goin for the ileo again,but offcoarse its your choice. I sincerly wish you all the best in whatever decision you make.
Leyton, England

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 5/25/2011 6:39 AM (GMT -6)   
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.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/25/2011 7:38 AM (GMT -6)   
Good Luck with your decision. You have to be the one to decide what is best ultimately so you will have no second thoughts afterwards.
That being said however your quality of life is indeed paramount. That is what got my husband to decide it was time as he just could not do it any more.

He and I were very prepared for a 2 step j-pouch process as was his surgeon. Of course beforehand he did give all the possible what ifs which turned out to be and he ended up with the permanent ileostomy. However even though we were both initially disappointed we did not pine over it and moved forward with it. Fortunately no complications and except for a minor inconvenience here and there finding the best wafer and some leaks along the way, things are incredibly better now.

Fortunately you have had experience with the ileostomy before so it won't be a total surprise to you. One of the biggest concerns I have overall is the multiple surgeries, healing, adhesion or scar tissue problems. Up front the surgeon and material we read did in fact recommend the ileostomy as the simplest, safest, fastest recovery etc. But if given the chance he still would have tried the j-pouch but it definitely was not in the cards for him for many good reasons.

Good Luck - I hope you are out of your pain and discomfort soon and healing and getting back on with you life and enjoying your family at 100% and not 50-60%. {{{Hugs}}}
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 5/25/2011 11:04 AM (GMT -6)   
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
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 5/25/2011 4:00 PM (GMT -6)   
Hi ironmum
I live in yeovil,somerset and im a member of the local running club there,not to many people know about my ileo to be honest but the ones that do are great about it,we have a laugh and joke about it now,my name is leyton green,If your on facebook then drop by for a chat sometime.
ROF

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/25/2011 5:02 PM (GMT -6)   
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:)
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/26/2011 4:30 AM (GMT -6)   
thanks guys.. you're all great :-) couldn't agree more equestrian mom! xxx
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 5/27/2011 3:46 PM (GMT -6)   
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
Sarah - 38 year old mum of 2 boys, competitive runner/triathlete, health and fitness writer

June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - dx colonic dysmotility April 2011. Currently taking Prucalopride 2mg p/d

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted Yesterday 12:08 PM (GMT -6)   
UPDATE
Just back from seeing my surgeon. Have a date for surgery - 11th July.

He's going to go in and do a laparascopy, as he wants to check for adhesions etc but is 90% sure I'll come out with an end ileostomy.

I'm petrified it might not work as well (or at all) as last time or that there'll be complications. He said he has NEVER had a patient who has had a reversal, then gone back to a permanent ileo before. He's very supportive and kind, but is just gutted (no pun intended) that it's come to this.

All very scary and not sure how I'll feel going down for surgery and not really knowing what the outcome is going to be... but feel I'm finally on the road to some sort of recovery or better quality of life. Phew... feel a bit wiped out to be honest. Just thought I'd let you all know anyway..
Sarah - 38 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - DX colonic dysmotility due to surgery/nerve damage
Meds - Prucalopride but not working

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted Yesterday 5:28 PM (GMT -6)   
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.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted Today 2:00 AM (GMT -6)   
good question! He didn't seem at all concerned about reversing it again though and I do have full confidence in him. He's very experienced and has been trained at the mayo clinic and worked with the top Professor in the UK (who I've also seen but now retired). I do have faith in him and trust him. But now you've got me thinking....
Sarah - 38 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - DX colonic dysmotility due to surgery/nerve damage
Meds - Prucalopride but not working

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted Today 6:57 AM (GMT -6)   
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!!!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted Today 8:09 AM (GMT -6)   
Hi EM

Thanks for your reply... no he's just doing the ileo... but I'll have an end ileo instead of a loop this time. He may never remove the rest of my colon.. we'll just see how it goes. The stoma wasn't in a bad place before, so they could just use the same site, however I would like it a bit lower if possible (I still yearn to wear a bikini if at all possible..), so the stoma nurse will come along and mark me up and we can see where is best.

I do totally trust him and know he'll do a good job - and you're right he does feel really bad.. :-( poor guy. He's done everything right and everything in his power to try and help me and it's turned out like this. He's very frustrated. But at the end of the day it's my decision and I know (so long as it works!) that I'm doing the right thing for me and my quality of life.

I've not come across too many people who've had an ileo then had it put back! it's lovely to hear from someone who knows what I'm going through. I love your last line on your signature.. and I'm hoping I'll feel the same and be able to eventually offer support to others going through this too.

He said he presented the case to some other surgeons and at least 50% of them said not to give me another stoma. But as I pointed out they have no idea how I feel and unless any of them have had an ileo themselves then they can't really comment! in many ways I'm better placed to know what I want as I know I felt better with it before. I was just thinking that today my stomach wasn't feeling quite as bad.. but then felt really lightheaded and weak and realised I've hardly eaten a thing in the last 3 days... cant' go on like this.

You're absolutely right! I can't wait to get back to tri training.. THANK YOU :-)) x
Sarah - 38 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp ileostomy
October 2010 - Ileostomy reversal - but didn't go well and struggling since.
Currently - DX colonic dysmotility due to surgery/nerve damage
Meds - Prucalopride but not working
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