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Discussion Starter · #1 ·
Hi all,

Long story short, I've struggled with constipation all my life, but came down with a bad case of SIBO ~2 years ago. I was sucesfully treated with antibiotics and the elemental diet, as confirmed with multiple breath tests. The gas and loose stools went away, but the constipation got significantly worse. At this point, my lung capacity is severely reduced due to the abdominal distention, I'd guess ~ half of what it was prior to SIBO. I've seen several GI doctors and undergone many many tests and treatment plans (e.g., colonoscopy, pelvic floor botox injections, stool analysis, antimicrobials/antifungals, all US approved prescriptions for constipation, etc., even ex-lax doesn't work anymore). I've cycled through several GI doctors, each telling me after several months that it's hypersensitivity and an anxiety/depressive disorder. I've lost 40 lbs (from 155 to 115 lbs, severely underweight for my height), continue to lose wight, routinely go a full night without sleeping a wink due to severe pain, and fear this may be the end. It seems the 'nuclear option' (ileostomy) may be my only chance at life. I'm only in the second half of my 20's. At this point I would consider myself the luckiest person in the world if I could have a stoma procedure performed (funny, right? It's all perspective I guess).

My question is this: does anyone out there have a recommendation for a GI doctor who is open to the option of stoma procedures for severe and unrelenting constipation? Out of the several GI doctors I've seen, most pull the 'it's all in year head' card and refuse to even order the tests to determine if a stoma procedure would help me. I've spoken to a GI surgeon who says I'm possibly a candidate for a stoma procedure, however, they are not qualified to authorize the procedure and I was referred back to my previous (useless) GI doc.

I'm hoping to find a GI doctor who is open to all solutions (including stoma procedures). I know at some point I'll run across a GI doc who will recognize the severity of my condition and be open to this, but I imagine I will need to cycle through many more doctors with a preconceived diagnosis before that happens, likely after several years and dangerous levels of weight loss. If I could get a recommendation for a good doctor and go to them directly, that would be ideal.

Washington state or the west-coast would be great, but in reality, I'll gladly travel anywhere in the US to get treatment. Thanks in advance if anyone happens to have a good tip!

Jay
 

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Hi Jay

so sorry for all you've been through. struggling with chronic constipation is miserable, isn't it.

long story short, i have an ileostomy. i had chronic constipation problems for over 50 years--since childhood. i originally was dx'd with ibs-c but i began to suspect that i had much more going on than that so i found a good gastro doc and requested some tests. after the tests, i was dx'd with colonic inertia, pelvic floor dysfunction, megarectum, rectal hyposensitivity and a long twisted colon. when the laxatives, meds, biofeedback etc finally quit working for me, my gastro referred me to a colorectal surgeon for ostomy surgery.

as far as looking for a new gastro is concerned---my gastro doc is no longer taking new patients so i can't recommend him to you. have you tried seeing a gastro doc who works at a university hospital or motility clinic--or someplace like the cleveland clinic or mayo? often these docs are more proactive about treating constipation than regular gastros. i know people who've been to the mayo clinic and were referred to a colorectal surgeon for an ostomy.

i do hope that you can somehow find some relief from the misery. take care.
 

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Jay25 -

Hi. Before you get surgery I STRONGLY suggest you try Dr. Schulze's Intestinal Formula # 1.

Link:

https://www.herbdoc.com/

I am not a salesperson, nor do I get any perks for pimpin' his product, but I have been promoting it for awhile here now because it works very well. I've been on it for I'm guessing almost 2 years or so now, give or take. I have not heard one person who's tried it say they don't like it. This product is a nice mix of different herbs. And yes, Dr. Schulze is a real doctor.

You should probably buy the Intestinal Formula # 1 maximum strength since your CC is so bad. (I use both, 2 pills of the I.F. # 1 regular strength and one pill of the I.F. # 1 max strength pills every day.)

If two I.F. # 1 maximum strength pills per day with a meal don't do it, then you have my blessing to look for a doctor to perform that operation on you. Here, in the U.S.? As long as you have the means to pay a surgeon they will normally do a procedure on you.

Some more information on IBS-C, if interested:

"The ABC's of Chronic Constipation"

http://www.ibsgroup.org/forums/topic/325690-the-abcs-of-chronic-constipation-aka-ibs-c/

"Finally! A product I can recommend"

http://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/

-Good luck and keep us posted!
 

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Discussion Starter · #4 ·
Thanks so much for the info Annie, I was hoping you'd chime in :). The Mayo clinic in Arizona isn't too far away, I'll probably book an appointment there. Do you happen to know the names of the doctors that gave the referral?
 

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Discussion Starter · #5 ·
Hi Flossy,

Thanks for the info on Dr. Shulze's formula. I have tried this (actually based on your suggestion!), however, it did not seem to help me even at high doses. I'd bet it would have helped prior to my current state when my issues weren't as severe. I think there is significant inflammation in my colon, as my blood and stool tests show that my antibodies are off the charts, so I imagine the pepper extract wasn't too helpful in my case.

Jay
 

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No I don't--sorry. Good luck with everything. Keep us posted.
 

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Hi Flossy,

Thanks for the info on Dr. Shulze's formula. I have tried this (actually based on your suggestion!), however, it did not seem to help me even at high doses. I'd bet it would have helped prior to my current state when my issues weren't as severe. I think there is significant inflammation in my colon, as my blood and stool tests show that my antibodies are off the charts, so I imagine the pepper extract wasn't too helpful in my case.

Jay
Wow. I guess there is a first time for everything! How high a dose did you take?
 

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Discussion Starter · #8 ·
Ah, well thanks so much for telling me about the Mayo and Cleveland clinics, really great info to have.

Flossy, I've tried varying doses from 1 to 5 capsules per day. None of the doses showed improvement in my symptoms, but resulted in worsening symptoms at the higher doses. Oh well, it seems many treatment plans that work for other people don't apply to me. Also, I missed the part of your first comment where you mentioned the part about having the means to pay a surgeon. I'm actually considering medical tourism to Singapore in the worst case scenario that my insurance won't cover it. Traveling to exotic locations around the world to have colorectal surgery, I'd be James Bond with IBS!
 
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