Signed off from surgeon today!! hurrah and THANK YOU ALL

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Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/24/2011 1:29 PM (GMT -6)   
Many of you have followed my trials and tribulations over the last year and I'm so grateful to you all for your support and words of advice. Your experience and knowledge is just awesome..

I wouldn't have made the decision to have the ileo put back it it wasn't for your encouragement and support and I thank you all from the bottom of my heart. Life with an ileo is pretty good - certainly better than the alternative. Your experiences gave me the confidence to have it done and know that it was the right thing to do.

So I saw my surgeon today for the 6 week check.. I had my permanent ileo done 6 weeks ago - and he's thrilled with how I'm doing. I bounced into his room full of energy and wearing tight JEANS and heels ! feeling amazing. I'm up to running 40 minutes, did a 2 hour bike ride and am eating pretty much anything I like and sleeping and feeling GREAT. There have been a couple of blips with leaks and a small infection at the incision site, but other than that I'm doing really well.

It seems that I'm a bit of a medical mystery. They have no idea why I ended up with colonic dysmotility after what should have been a simple surgery and after the stoma was reversed the first time. They THINK the peritonitis damaged the nerves in my colon causing dysmotility but they don't know for sure - none of my tests were ever conclusive. You'll probably find a paper in the BMJ about me one day..

What's also really interesting is that he said no other surgeon would have put my stoma back. He consulted many of his colleagues and none of them said he should do it. In fact many of them said I should have a psych eval!!! I basically begged him to put it back - I felt better with it before and just wanted it back. I was lucky - he was VERY supportive and knew me well - he had been there right from the start when I had peritonitis and he saved my life.

I think it's sad that surgeons won't offer a stoma to people as an option - I would never have been offered an ileo as a solution to my problems and would have been left to suffer. It was only because I'd had one before and knew I felt better then that I could say with knowledge that was what I wanted. And I was right.

Anyway... I thought I'd make a little list of the things I've had done over the last 16 months - just for fun!

4 surgeries - emergency surgery to treat peritonitis, sigmoid colectomy/stoma formation, stoma reversal, laparascopy/stoma formation
5 CT scans (with contrast)
1 MRI Scan (with contrast)
1 Colonoscopy
3 Gastrograffin enemas
1 small bowel follow through
2 transit tests with Xray
14 consultations with 3 different consultants (inc a world leading professor)
1 incorrect diagnosis of SIBO
8 courses of antibiotics
4 IV courses of antibiotics
22 days in hospital
Many many hours spent on Healingwell :-)

So as long as I don't develop a hernia or any complications or diversion colitis, then I will never see a hospital again.. hopefully. I'm not even going to consider a J-pouch. I want control over my bowel to allow me to run marathons and I don't believe I would have that with a pouch. I still have my colon floating about but at the moment it's not causing any problems. Now it's bypassed though I'm feeling amazing!

So tonight I'll be celebrating with a little drop of prossecco and pizza (with vegetables) !!!!

Thank you all for your support and big hurrah! fingers crossed it continues .. x

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/25/2011 12:08 AM (GMT -6)   
So happy for you!! yeah
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.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/25/2011 11:21 AM (GMT -6)   
Great to hear things are going so well...and you have a surgeon who listened! Sometimes they don't understand how important quality of life is!! And, you probably helped someone else, now that he knows differently:)
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!

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 8/26/2011 5:34 AM (GMT -6)   
Hi sarah
 
such good news but i always knew you would be okay.
 
what was the small bowel follow through like? what were your results do you know?
 
i wonder why i was not offered it - had the gastric empting test the other day.  i dont want any more tests really as it takes up so much time.  but i guess it is good. xx
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR/ODS/diagnosed slow transit constipation
2007: Sigmoid resection -MRI showed twist - (made colonic inertia worse but cleared obstruction)
March 2009: Total colectomy/loop ileostomy - quality of life 100%
23 Sept 2010: Ileostomy reversal - not going well
Waiting for test to be done

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/26/2011 7:46 AM (GMT -6)   
Karen.. the small bowel follow through was 24 hours of clear fluids then a drink of barium (nasty stuff). Then xray at 20 mins and more if needed. Mine whizzed through in 20 mins and reached the colon, so no problem and no more xrays. It was more to look for a stricture rather than motility though.. I don't think (may be wrong) that there is any test for small bowel motility.

I'm not sure why they had you have a gastric emptying test, but I guess it's good to have that information, but somehow don't think it'll be relevant. From my experience, none of the other surgeons (the prof included) would have been happy putting the ileo back. They really do see it as the last resort and a failure on their part. All my surgeons colleagues told him not to do it. Thankfully for me he's young, knows me well and has been there with me from the start so knew I was sure. I did have to sit in his office in tears and virtually beg him to do it though.. no-one would EVER have offered it or suggested it. If that's what you want, it sounds like you're going to have to be pretty forceful. Harder when you're on the NHS too.. I've been very lucky having private healthcare and also my surgeon with a good attitude. Really hope this works out for you too.. take care Sarah x
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June/Oct 2010 - Peritonitis/perforated diverticulitis. Sigmoid colectomy, temp ileo then reversed.
DX Colonic dysmotility.
July 2011 - Permanent end Ileostomy after begging surgeon to put it back
Follow my blog - http://bagthatruns.blogspot.com/

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 8/26/2011 8:22 AM (GMT -6)   
thanks sarah - yes this consultant seems to want to delay things for some reason - but i will be well cross if he says he wants to yet to another test before going further. prof williams actually said to me at my second op folowup '..well it seems you might need to think about going back to the ileostomy...' so it appears some dont do okay afterwards, and his words were 'we dont want you to suffer..' - i wish they would publish something so ppl can see percentages of successful reversals... for ppl like me with CI. x
Karen: 49 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR/ODS/diagnosed slow transit constipation
2007: Sigmoid resection -MRI showed twist - (made colonic inertia worse but cleared obstruction)
March 2009: Total colectomy/loop ileostomy - quality of life 100%
23 Sept 2010: Ileostomy reversal - not going well
Waiting for test to be done

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 8/26/2011 8:33 AM (GMT -6)   
Sarah,
That is so great that you are doing well.  Long story short, I have suffered for years with CI.  In Feb., I had a left hemicolectomy (complained about constant distention in left abdomen and trapped gas you could hear even after getting like 6-7 dulcolax to work!).  That surgery did not work, and I continued to suffer.  Finally, had some more tests done, and I had a total colectomy on June 2nd.  Again, I was discharged, and I was put back in the hospital a couple days later.  I could not go to the bathroom, and the CT showed what looked like a leakage anastomsis.  However, I had a hematoma full of blood.  I was cut open again, and stayed another week in the hospital.  Now, I still continue to suffer, and I have a hard time eating everyday due to gas and bloating.  Currently, it seems I have to take milk of magensia, use suppositories, enemas, etc. to go the bathroom.  However, I still complain about lots of pressure in my left abdomen, gurgles, and gas that does not want to expel out of my bottom.  It is really making me sick, and when I get really backed up; I burp a lot and get nauseus.  Finally, had an anal test after my total colectomy, which revealed weak anal muscles.  I just think doctors are at a loss with what to do with me, and I have spent many hours on here trying to figure out what is wrong.  Possibly considering an ileo for me, and I feel it is the right thing because I feel better when it seems things are moving free-flowing out of me.  However, the other day, like Karen is undergoing more tests, I had a gastric empyting test, which was extremely abnormal.  Surgeon wants to do more testing!  Now, I have to wait 4 weeks with a consultation with a new, specialized gi doc my surgeon wants to see before we consider the ileo.  It gets frustrating!  Do you think gastroparesis can be caused by a built-up of gas and stool?  Anyways, I just wanted to say I am happy that you are doing well, and if you can offer any words of encourgement or advice; I would appreciate it!!!
Kyle

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/26/2011 11:24 AM (GMT -6)   
Sarah, glad to hear you're doing so well! Kyle, hang in.... sounds very rough.
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
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