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Crohn's Disease Forum » Your Story » New member facing surgery


04-25-2017, 04:18 AM   #1
rorho19
 
Join Date: Mar 2017
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New member facing surgery

I am a 57 year old UK male that was diagnosed about for years ago.

I have had 2 strictures in the small intestine all this time and suffered regular abdominal pain in both the left and right and also periods of significant bowel and bladder urgency. I assume the latter is due to compacted stool pressing on the bladder. I hope they have checked for anything that might be afeting the bladder - like loops of intestine, adhesions, fistulas.

Worst pain is while driving and while sat at a desk. Makes it hard to earn a living.

Had a better year in 2016 as was made redundant just after my father passed away and I spent a most of the year refurbing his house to sell. Having returned to a 6 month desk job since - pain has increased so much I went back to gastero consultant.

Inflamation virtually zero and faecal calproctin only 111 ( very low inflamtion). MRI scan showed strictures are fibrotic so GI recommended resection and referred me to surgeon.( still waiting ... as is NHS.)

Have been on Azathioprine for several years. This seems to have halted the inflammation and put me in remission, but I feel rubbish all the time and have not slept for more than 5-6 hours in years- early waking.

I know I should be gratefull that I have not had the D version of CD that sends people to the loo dozens of times a day.

Surgery: looks encouraging that the lower stricture is over 9 cm from the illecal valve - so hopefully would keep that and only have about 30cm removed which hopefully means bowel would adapt well and losse moevements disappear over a few weeks or months.. GI is talking about laparoscopic so that should make things easier.

I have found the emotional side of things very difficult, cry allot and have little interest in normal life anymore.

Am terrified of the difficulties of recovery and fear that it won't fix most of my problems. ON top of that as we all know surgery for CD is no cure. If I have been in remission for a couple of years does surgery risk setting it off again?

Do Older onset crohnies tend to have a milder form?

Any comments appreciated.
Cheers
04-25-2017, 06:07 AM   #2
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Most people find that surgery transforms their lives. For me, after surgery I felt better than I had my entire life. I had no pain and boundless energy. After I recovered I was working 6-7 days a week to save up for travelling and I went trekking the Amazon Forest. I was only 22 at the time and my recovery took about a month. Probably 1-3 months is the norm. You will need to stay on your meds afterwards, as like you said, it isn't a cure. I had loose bowel movements for a couple of months afterwards following dairy but then it righted itself. Can't actually remember the last time I had diarrhea. It's not something I have ever really had to be honest.
__________________


History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
04-25-2017, 06:40 AM   #3
rorho19
 
Join Date: Mar 2017
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Thanks for your input.

was your original resection small or large bowel?
04-25-2017, 06:42 AM   #4
eleanor_rigby
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It was where the small bowel joins the large bowel that was resected and appendix removed. Mine was open, the fact that yours should be lapro is a strong bonus
04-25-2017, 06:47 AM   #5
rorho19
 
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Yes hopefully lapro is easier- I assume you did not loose the valve or sufficient length to give you absorption or looseness problems..
04-25-2017, 06:51 AM   #6
ronroush7
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Hi. I wish you the best. Like above, I had loose bowel movements for a while afterwards. Keep us updated.
04-25-2017, 07:36 AM   #7
eleanor_rigby
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Yes hopefully lapro is easier- I assume you did not loose the valve or sufficient length to give you absorption or looseness problems..
It will certainly be easier and you will be out the hospital quicker. I was out after around 7 days.
You know I have no idea if I lost the valve. But I am able to absorb b12 and don't have diarrhea so maybe not?!
04-25-2017, 08:56 AM   #8
rorho19
 
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Really pleased to hear it all worked so well for you at least for 4 or 5 years.
04-25-2017, 08:57 AM   #9
eleanor_rigby
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Really pleased to hear it all worked so well for you at least for 4 or 5 years.
Things might have been different for me had I been medicated straight after. I may not have flared.
04-25-2017, 09:06 AM   #10
rorho19
 
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Yes I think it will be back on the azathioprine within 1 month.
04-25-2017, 10:49 AM   #11
Scipio
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If I have been in remission for a couple of years does surgery risk setting it off again?

Do Older onset crohnies tend to have a milder form?
The answer to the first question is no, to the best of my knowledge surgery does not trigger flares, and it holds out the prospect of providing considerable relief from you stricture symptoms.

The answer to your second question is yes, late onset Crohn's is often milder than early onset. But it's no guarantee, and it sounds like your particular case has been plenty serious enough even with the late onset.
04-25-2017, 11:07 AM   #12
rorho19
 
Join Date: Mar 2017
Location: london, United Kingdom

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The answer to the first question is no, to the best of my knowledge surgery does not trigger flares, and it holds out the prospect of providing considerable relief from you stricture symptoms.

The answer to your second question is yes, late onset Crohn's is often milder than early onset. But it's no guarantee, and it sounds like your particular case has been plenty serious enough even with the late onset.
Thanks for the answers SCIPIO...yes the really unfortunate thing is that my worst symptom in not the pain from the food going through the strictures - which is bad enough - but that if I used Movicol to keep things moving -as directed by doctors - it gives me strong pains for at least half a day.(both left side(worst pain) and LRQ ).but if I don't then I guess everything gets stuck and I end up with feeling bowel and sometimes bladder urgency.

I hoping surgery will get rid of all of this- I know I might have a few weeks even a month or two loose - but bowel and diet should adapt.

Cheers
04-25-2017, 11:09 AM   #13
ronroush7
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Thanks for the answers SCIPIO...yes the really unfortunate thing is that my worst symptom in not the pain from the food going through the strictures - which is bad enough - but that if I used Movicol to keep things moving -as directed by doctors - it gives me strong pains for at least half a day.(both left side(worst pain) and LRQ ).but if I don't then I guess everything gets stuck and I end up with feeling bowel and sometimes bladder urgency.

I hoping surgery will get rid of all of this- I know I might have a few weeks even a month or two loose - but bowel and diet should adapt.

Cheers
Support and prayers going your way.
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