not much small bowel left?

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uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 5/21/2009 9:30 AM (GMT -7)   
just seen a letter sent from my surgeon to my GP (family doctor) with details from my recent resection. Says that she did a redo hemicolectomy and small bowel resection/anastomosis and now I have 195cm small bowel left. This seems a very small amount left compared to what I thought had happened from this and my first surgery in 1996 - can't believe so much has been removed. Looked up bowel length on internet and now freaking out cos all say 'short gut syndrome' probable if less than 2 metres.  shocked
 
Thing is - I'm not having diarrhea (several bm but formed) and not being told to have B12/other supplements or to be careful about diet. my history seems to be about obstructions (active disease or scarring) even though I didn't think I had CD until recently. everything says high risk of further surgery in the future (I am 44) but I was so hoping to just have to make minor adjustments but this seems more serious????
 
anyone similar?? could it be a mistake?
 
Penny      cry

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 5/21/2009 2:17 PM (GMT -7)   
You should have a talk with the surgeon and the doctor. It could be a mistake.

In 2003 I had 3 feet of small bowel, secum, appendix removed and I am on monthly injections of B-12 and have been left with daily diarrhea.

In your case I have to wonder what part they resectioned because you most likely need monthly B12 injection's with that amount of bowel gone (to avoid pernicious anemia). No diarrhea? that's nice..check with your doctor, maybe the report is wrong.



randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 5/21/2009 11:39 PM (GMT -7)   
UKLASS, i bet it is a mistake. maybe meant 195cm removed? seems more logical... as a person with SBS and a verified 80cm of small bowel , i can assure you you would not be having many if any formed stools. please see my website for further details... :0)
randynoguts 



     http://www.geocities.com/randynogutsweb/


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/22/2009 3:44 AM (GMT -7)   
I'm with Randy. I would call your doctor. My Mom had Short Bowel Syndrome, but not until she had had 3 resections, over the course of 30+ years. During the first one, in the mid 60's they just cut and cut and cut. I've tried to get her records to find out exactly how much bowel she had taken out, but I've never been able to get them. She had to supplement her diet with a specific fat so that she could absorb some nutrients. This was about 15 years ago, so things may have changed. As for the B12, you will need to have your level checked by blood work. It is a specific test. Not something that is done in the normal CBC. Your body does store B12, so if you have some reserves, you could go a long time before you actually need B12 shots, or you may already be depleted depending on how long and how severe your disease was. I went more than a decade before I had to start getting B12 shots.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 5/22/2009 4:22 AM (GMT -7)   
How much Small bowel do we have and how much taken out to be considered Short Bowel Syndrome? Just curious as I had 18" removed and wondering how much I have left.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/22/2009 9:32 AM (GMT -7)   
I believe I read somewhere that it's just as important which part of the small bowel is cut as how much. The ileum is the 'worst' part to have taken out and the middle part (jujenum?) has the least effect on digestion. Further, I think we have about 20 feet of small and 6 of large.

So you're probably a long way from having SBS, Wolfie.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 9mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


uklass
Regular Member


Date Joined May 2009
Total Posts : 65
   Posted 5/22/2009 1:19 PM (GMT -7)   
Thanks all for the replies.
 
I know I have had caecum, appendix and part of ileum removed. I have seen the same figures as Rider Fan - we have an average of 20ft small bowel and 6ft large bowel (although varies) but common agreement that less than 6ft usually means 'short bowel' although also says gut can adapt quite well over time. I just can't believe that nearly 14 ft of bowel has been removed over 2 operations without any doctor flagging up major implications. I'm hoping there has been some error as you suggest but not seeing GI consultant until 10th June. It's really hard to keep calm around all this stuff especially when I'm getting different pains and obviously thinking the worst. It's exhausting!
 
Thanks for info about B12 - I didn't know it could be stored for a while so I have time to get it tested out anyway.
 
I'm definitely not going to start maintenance meds etc until I have the full facts about my situation and best guess on prognosis  - I seem to have the stricture-type CD that people talk about.
 
Oh .....if I read one more article that says I can lead a 'normal life' I will scream so everyone can hear................my current normal is not what I want!!!!  Ooops - rant creeping in there but still valid xx
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