i got my stoma back! :-)

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Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 7/13/2011 11:52 AM (GMT -6)   
Still in hospital but just a little update... Bear with me as on blackberry with tiny screen. Had my surgery on Monday and now have an end ileostomy. My surgeon also went in with a scope as was desperate to find something he could fix and to avoid the stoma.. He apparnetly had a good rummage and must have used a lot of air as I'm very bloated and uncomfortable.

The only thing he did say was that my colon was very long and very floppy with little muscle tone.. Explains the dysmotility and all my problems. He somehow thinks the peritonitis I had las year kiilled off the nerves.

Anyway... So far things ok. The stoma is working and there is ouput. Sturggling to eat much and feeling very bloated but am walking and walking and hope that will get things moving. I'm still at the yoghurt/jelly stage - and tiny portions. Pretty sore as also have 2 laprascopic scars and very swollen, but the first signs are good! Poor surgeon looked so crestfallen that its come to this and he says he feels he's 'failed' but I don't feel like that. Its not the end of the world for me - far from it. I feel like its the start of a bettter life where I can get back to eating and enjoying food and exercising again.

Keep everthing crossed that recovery continues.. Sure it will be a bumpy path but I'm happy to be patient go with my body and let it heal. I'm dreaming about steak, chips and red wine - maybe in a few months!

Thank you for all your support and advice as it has really helped me get to this point and its so inspiring to hear wonderful positive stories.
Sarah xxx (and Roger the stoma) :-)
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
Perm Ileo surgery planned 11th July

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/13/2011 12:01 PM (GMT -6)   
Sarah -- glad to hear that you're happy with how the surgery went, even if your doctor isn't. He probably has more limited goals than you do, yours is to get quality of life back, and you're on your way.

After laparoscopic surgery you can get weird pains in your shoulders -- the gas migrates there. Just be aware, it is not intuitive. Hope the bloating settles down soon.

It's great that you're walking, and starting to eat. I hope things continue to go smoothly. Awesome that the surgery is done, congratulations!
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 7/13/2011 12:33 PM (GMT -6)   
So glad things have worked out for you how you wanted them to. Surgeons, bless them, have big egos and don't like to be wrong but he should remember that this is what you wanted and so he shouldn't think of it as a failure.

Hope recovery goes well for you and that you'll soon be tucking into that steak and chips. At least the red wine can be enjoyed earlier as you don't have to chew it. :) lol
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/13/2011 1:50 PM (GMT -6)   
Sarah,
So happy to hear of your good attitude and so glad to hear you're on the road to your better life!!! I'm glad to hear your dysmotility was explained as well. Zoe (my stoma) says hi to Roger! Rest up and keep us updated!
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!! :)

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/13/2011 8:09 PM (GMT -6)   
Hey Sarah -- happy to hear things are going well after the surgery. Keep us posted on your progress. Every day will get better and better.

I can understand how your surgeon feels -- my husband's was disappointed too that he could not honor my husband's desire for the j-pouch and needed to do a permanent ileostomy. Even though they are entrusted by you and you know all the risks, they certainly want to try to accomodate and please the patient too with the end result that the patient is hoping for. But as we know this is not the way it always goes.

He and I are not disappointed which is what I am also gathering from your comments too. To improve your quality of life and being able to get on with your lives now is so much more important. All the Best!!
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

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/13/2011 11:53 PM (GMT -6)   
i'm so happy for you Sarah! welcome back Roger :) it's time for you to start a new better life, you deserve it after all you've been through! best wishes to you!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 7/14/2011 12:23 AM (GMT -6)   
Great News Sarah and your right life will be much better and steak, chips, red wine and anything else you want to eat is going to be not a problem. Just have to make sure you chew well. The only way it up from here on. Take care
Doreen

WonderTurd
Regular Member


Date Joined May 2011
Total Posts : 129
   Posted 7/14/2011 4:26 AM (GMT -6)   
Good to hear your surgery went well! Hope your recovery is smooth and things keep going well for you.
Ulcerative Colitis since 2002
Interstitial Cystitis since 2010
Asthma since 2011

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/14/2011 6:18 AM (GMT -6)   
I am very happy to hear that your surgery went well. Here is to better times ahead with lots of steak and chips!

My surgeon never had the chance to be disappointed in me ending up with an ileo because that is what I wanted from the start:) Fortunately he was always supportive of that choice.

Best wishes for a smooth recovery.
-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

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/14/2011 5:14 PM (GMT -6)   
So happy you're doing well, and welcome back Roger! :-)
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 7/14/2011 9:25 PM (GMT -6)   
Thanks everyone. Am going home tomorrow! Day by day am improving and managing to eat a little more each day. Taking it very easy but feeling so much brighter already and like a weight has been lifted off my shoulders. Can't wait to get home to my bed and my boys. Alho the nursing care has been brilliant and I've been very well looked after. Am keeping topped up on the pain meds and intend to take it easy! For a change ;-)

My surgeon popped in last night and announced he had been talking to his mates in the US and reckoned he had a plan to 'plumb me back together' (he's left my 'long floppy colon in situ for now). I just laughed and told him he was never coming anywhere near me again. darn what IS it with these guys!? He just can't let it lie. If I feel better, can eat properly and exercise again all with a stoma.. Why on earth would I want to risk changing that?! Duh don't think so. You all get that don't you!?

Thanks again to you all xx
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
Perm Ileo surgery planned 11th July

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/15/2011 5:28 AM (GMT -6)   
I absolutely get it! Thats why I opted for the perm ileo in the first place!!

Glad you're going HOME!!!! :)
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!! :)

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 7/15/2011 7:18 AM (GMT -6)   
i definitely agree. why go back to something that doesn't work? i asked my surgeon to do me an end ileo, he said "sure no problem", and when i woke up from surgery i saw the loop and was SOOOOOO pissed. i confronted him and he said he can't just do me an end ileo right at first..... jerk!!!! then why say "sure no problem" and then do the opposite???? some drs.....

but anyway, i'm doing great and happy with my squirty :)

glad you're doing well and going home :):)
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/15/2011 8:10 AM (GMT -6)   
Well, I bet he'd get a really good article if he managed to do that surgery, and it'd be way cooler for him than making a boring old end ileo....

Great that you're doing so well! Sounds like you're not going to need him anymore....

My surgeon is active in a women in surgery group.... she talked a bit about this issue w/me before surgery, saying that for her it's all about quality of life afterward, and that unfortunately, that's not how it is for everyone..... she thinks getting more women in will help, as they focus on the big picture more..... (of course, she was talking in general, not about individuals, as there are plenty of male surgeons who care about the big picture and I'm sure plenty of female ones who don't).
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 7/15/2011 2:17 PM (GMT -6)   
Well have just got home this afternoon and doing okay. Was starving when I got home and had some rice, fish and even few veggies.. tiny amount though. But all going through well and Roger is doing a grand job.. am very happy with him so far :-)

Having a few wobbles about the bag being there forever, but am only 4 days post surgery and emotions all over the place, tired and sore. To be expected I guess, even though I wanted this.

Imagine the minute I eat my steak and chips and get out for my first run, I'll be forever grateful to my new buddy.

Surgeon discharged me this morning and was less 'huffy' about it. He's the same age as me and lives just up the road, we have friends in common etc etc and I think he would have done anything to not have to do this to me. That's all it is I think and he's never reversed a reversal before - so as far as he's concerned it's a 'failure'. Sure he'll get over it ! once he sees me running marathons again anyway ;-)

Am craving salt though so my electrolyte levels must be all over the place. Am sorting that by eating crisps! he he he.
Sarah - 39 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 loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/15/2011 4:52 PM (GMT -6)   
sarah,

Hope all continues to go well. I know I think docs all see bags as failures. I was so injured a few years back that a bag was my only hope. I went looking for it. It beat dying! In your case, it is quality of life. All the best. I have travelled a LOT with my bag, after all it is checkable luggage :-) :-) :-) Best wishes Rosemary

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/15/2011 5:34 PM (GMT -6)   
I had a lot of emotional ups and downs after surgery even though I really, really wanted my permanent ileo. It does get better as you begin to realize how good you feel.

All these posts about surgeons makes me extra thankful for mine. He never made me feel bad about choosing a permanent ileostomy at all. He made it sound like just as good of a choice as a j-pouch and encouraged me to pick the one that I thought was best for my goals, values and lifestyle. I guess he was unusual!
-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

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/15/2011 5:37 PM (GMT -6)   
Sarah,
Congratulations on being home! When you're back to exercising, you should jog by his house, smile and wave! You are doing amazingly well and have such a positive outlook.
I'm so happy for you! :-)
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5958
   Posted 7/15/2011 5:59 PM (GMT -6)   
      Congrats Sarah!  Glad you are up and about.  Just take things slow. 
      My surgeon would not even consider a j-pouch for me but as soon as I told him I had no problem with the idea of wearing a "bag", I was just so sick of always being sick, he scheduled me for surgery as soon as he felt the Humira was out of my system (about six weeks later).
     My GI doctor was the one who said he felt he "failed" me.  All he wanted to do was put me on more and more drugs, none (except prednisone) of which did squat for twelve years.  At the age of 63 I felt I had better make my own decisions.  Needless to say, I have never returned to my GI doctor.  He never asked my surgeon how I was doing even after my surgeon phoned him after my operation.  Glad my surgeon never sent him a follow up letter.
     I'm a little over one year post op and have been living life to the fullest!  Enjoying days at the beach the past week scool

motoe
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 7/16/2011 8:42 AM (GMT -6)   
Hi Sarah,

So glad to hear you got your stoma back - well obviously not glad that your problem got this bad, but glad that you're finally getting some relief from your dysmotility. I have also suffered from this for 2 years now and just had an appointment with my gastroenterologist on Thursday that he reckoned an ileostomy of subtotal colectomy with ileorectal anastamosis wouldn't help as often this dysmotility spreads to the small intestine and stomach. I am currrently taking Resolor but am still completely laxative dependent and have to do enemas 2-3 times a week. I just feel like the rug's been pulled from under my feet - before I always thought that at least if I exhausted all other treatments that I could always have an ileostomy as a last resort but now to be told that it wouldn't be successful - I don't mean to sound dramatic but I was devastated.

Anyway I'd be really grateful if you could let us know how you are going, so hopefully I can persuade my gastroenterologist that an ileostomy might be a good idea.

All the best on your recovery and getting your life back!

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 7/16/2011 10:22 AM (GMT -6)   
really sorry to hear that news motoe... :-(

They think my dysmotility was caused by the peritonitis I had last year and only affected the colon - although they couldn't guarantee that. It was only because I'd had an ileo before that we had a good idea it would work again. My consultant did warn me that if the rest of the small bowel was affected that the ileo wouldn't work and then there would be no options available.. Thankfully so far it seems to be working just fine, but it was a risk. They didn't really know to be honest - and it sounds like in your case they don't really know either.

If I remember yours came about after a bout of gastroenteritis? I'd therefore question whether the dysmotility has affected the whole of your digestive system.. or if it's just your colon, in which case there's no reason why the ileo wouldn't work. Have you had small bowel motility tests and gastric emptying? that might give you a better idea of whether the small bowel is affected. It may just be that your surgeon isn't willing to take the risk. I"m not sure mine would had I not had the ileo before and had I not begged him to do it. My line was that I knew what I was facing, I'd had one before and knew I felt better. Unfortunately you don't have that bargaining power. Don't give up hope though.. from my experience they'll let you soldier on and leave the ileo as the last resort and it sounds like in your case that's what's happening. I'd try again, and possibly even get yourself over to London to a teaching hospital for a second opinion. The fact is, they don't know what's happening with you and therefore can't say for sure whether the small bowel and stomach is also affected or not.

I'm sure others will have more advice and more experienced than me.. so perhaps start a separate thread and see what advice you get.

I'm doing great so far (fingers crossed) and it's making me realise just how bad things were before. I'm feeling really good and starving which is a strange feeling!

I really hope you find some sort of outcome with all of this, but please don't give up hope. Take care Sarah x
Sarah - 39 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 loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy
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