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Post by maggiesara on Jan 30, 2015 13:11:47 GMT -5
First, I'm very sorry to have disappeared. You folks have all been so helpful to me, and I should have tried to repay the courtesy.
I suppose that a big reason for my staying away is that I have this problem, clearly stemming from my surgery, that seems completely intractable: I have chronic, terrible, incredibly debilitating diarrhea and related problems -- gas, bloating, belching, farting, pain,....it ain't pretty and I am kind of at my wit's end. I have been given many different things -- a zillion different meds (including opium), various diets, no coffee, no gluten, no dairy, no green vegetables, lots of starch, small meals, large meals....everything seems to work well (meaning it doesn't CURE the problem, but it does lessen the symptoms noticeably) for....a week or two. And then the problem comes roaring back. For the past two or three weeks, I have needed to use the toilet an average of 18-20 times a day. The skin on my ass is so inflamed it is peeling off in sheets, and of course, I keep getting vaginal infections. I can't.....I'm kind of a wreck.
My doctor is a GI, and I like him, but he's clueless. He tells me to take the opium, take Immodium, and then he...just looks blank. The Cleveland Clinic has a department specifically devoted to irritable bowel disorder (not just disease, which I gather requires a specific diagnosis), and I am almost at the point of just calling them and saying HELP. However, I do think it's worth making one more attempt to discuss this with a doctor who might actually A) know something about it, and B) give a fuck, which lets out pretty much all the doctors in NYC, so far as I can tell.
I will travel wherever to get this fixed, or to have a hope of getting it fixed. I need suggestions as to who to contact, and a personal recommendation would be very helpful, since I'm not calling about having surgery done. Any ideas gratefully received.
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Post by newyorkbitch on Jan 30, 2015 13:23:22 GMT -5
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Post by newyorkbitch on Jan 30, 2015 13:55:13 GMT -5
You could also call Oscar Lebwohl, arguably one of the best gastroenterologists in the country. nyp.org/physician/olebwohBut I think you need a DS expert in the mix. Start with Pomp and his team. See how it goes. Call Lebwohl if it makes sense after that.
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Post by maggiesara on Jan 30, 2015 14:00:51 GMT -5
you're right. I'll call them this afternoon.
It wasn't a function of not being a fan of Pomp's so much as the fact that he clearly didn't want to do the DS and was not doing them often.
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Post by OnMyWay2Thin on Jan 30, 2015 14:06:26 GMT -5
I don't have much to add, just wanted to say I hope you get a doctor that can help you. You certainly don't deserve to be living like this. NYB always has good information, I would follow her suggestions in a heartbeat. I hope you get this under control soon and start feeling better...
Kelly
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shawnern
Junior Member
Posts: 52
Surgery Date: November 24,2014
Surgeon: Michael Kendrick MD
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Post by shawnern on Jan 30, 2015 14:11:41 GMT -5
I'm Sorry to here everything you have been through. You may want to contact Mayo Clinic, we have a renowned GI dept. and several Drs that do the DS and revisions. Good luck Shawn
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Post by newyorkbitch on Jan 30, 2015 14:19:00 GMT -5
Call them, but at the same time I would send him an email and also send an email to Liz Goldenberg, the senior nutritionist there.
Mail your operative records and everything subsequent to that to them as well.
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Post by goodkel on Jan 30, 2015 15:13:22 GMT -5
NYB gave you great advice about Pomp's office. They have been very helpful to other post ops before.
Have you been tested for infection?
Don't stay away again. If we can't help you, we can at least hold your hand.
I hope that this miserable situation clears up quickly for you.
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Post by aa on Jan 30, 2015 15:16:49 GMT -5
I hope Dr. Pomp and Liz can help you out.
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Post by maggiesara on Jan 30, 2015 15:42:54 GMT -5
Ok, well, I have an appointment with Pomp on the 11th. I think that's at the very least a good place to start.
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Post by newyorkbitch on Jan 30, 2015 15:57:19 GMT -5
Ok, well, I have an appointment with Pomp on the 11th. I think that's at the very least a good place to start. Great. Bring everything with you. Your op records, any and all testing since your DS too, your hernia stuff, all meds you've tried, etc etc Also shoot Liz an email and tell her you're coming, tell her your story/details, ask if any of the GI docs on their team have particular expertise that would help you.
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Post by PrettyGirlBounce on Jan 30, 2015 17:07:02 GMT -5
Hope things go well with Pomp, Maggiesara!!! Trust me girl I had my share of major complications post-op...it is no fun. I hope you soon find relief. HUGE hugs!
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Post by bboop on Jan 30, 2015 20:28:59 GMT -5
I'm sure Dr. Pomp and his colleagues can help, if not try the other guy NYB suggested.
I have an irritable bowel too. So I know how awful you fee right nowl. I took six months of steroids...no opium and that seemed to work, then he put me on Lalda and I'm taking two per day but could take up to four. Trust me, the GI guy I go to is great but he's in San Marcos, Tx. I think you can find a good one in NYC...somewhere.
And yes, I do know what you mean about doc's not seeming to care. I went to one who is the head of the big Austin GI practice and he was awful...just awful. I was frantic and had every last test they could think of...even had and endoscope and the one where they go down your throat (having a senior moment)...every test for gluten intolerance and just about every test you can think of. I'm on a maintenance dose and I seem to be fine. Just living my life finally diarrhea free. Woo hoo!
You can get this fixed. I promise. Also get a toilet bidet...it's hand held and you can probably install it yourself. Amazon has them, that will really help with the worn out bum you have right now...I know been there done that.
Come back and let us know what they have to say. We care about you.
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Post by newyorkbitch on Jan 30, 2015 21:32:11 GMT -5
Maggie if your issue is related to something specific to your surgery, then you need to figure that out. You may not have IBS or some such...you may have something directly related to your surgery. I don't know how anybody is going to figure that out. But certainly a surgeon like Pomp can look at your operative report and everything else that has gone on and at least try to understand. But it may be that without opening you up, there will be no real diagnosis or solution. Or it could be that you are one of the people that for whatever reason, responded this way to the DS. How long is your CC? What did Herron say about your operative report?
Lebwohl is superb - but if what is going on is related to your surgery, I'm not sure what a GI can do for you...since nothing you have tried has worked so far. But it's certainly worth a consult to see if there's something to be done, if Pomp has no suggestions other than opening you up (which might be the right path, although I hate to say it).
You should keep a very detailed eating log so that you can bring it to Pomp and Liz and then to a GI...also one of the GIs on Pomp's team may be a better choice...I'd say exhaust your options at Cornell first and then call Lebwohl before you do anything else. But I do not think you have to leave NYC for any reason....I do not think you will find a better bariatric surgery team than at Cornell, and I do not think there is a magic GI out there in Cleveland or anywhere else that is going to be better than what you can find in NYC.
Be prepared to be frustrated - you will likely have to do things you have already done...try elimination dieting, take certain meds, etc etc. But that's all important - doing things with fresh eyes looking after you...you never know.
But keep a food log, starting now, and don't stop logging at all for a long time.
Also - I remember that the surgeon you chose for your hernia repair and plastics said that he wasn't going to operate until your diarrhea was resolved....I assume so as to have to open you up only once? What happened - clearly he operated without a resolution of the diarrhea...
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Post by maggiesara on Jan 30, 2015 21:42:45 GMT -5
Bboop, thanks so much both for the ...you're the first person I've encountered who's had something like this. It's really good to hear that you've found a solution.
NYB, Herron had nothing to offer. He made it very clear that he didn't give a damn about my GI issues and wasn't interested in them. My cc is 125 -- that's Roslin's standard length. I assume this is related to my surgery because although I had a certain amount of Tender Tum syndrome before the surgery -- Metformin gave me massive diarrhea, for example -- I was generally fine. But I've been living in the bathroom for the past year and a quarter, since the surgery.
I'm looking at another surgery anyway -- the hernia surgery fixed the hernia but they didn't do shit about cosmetics, so I've got this goddamn apron of skin and flesh hanging down plus a weird sort of pouch on one side above my waist. I am NOT pleased. At any rate, so there's more surgery in my future anyway.
Yeah, I'll start with the food log again.
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citizenk9
Junior Member
Posts: 99
Surgery Type: DS
Surgery Date: 10/13/2009
Surgeon: Dr, John Rabkin, San Francisco, CA
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Post by citizenk9 on Jan 30, 2015 23:08:27 GMT -5
You poor thing. My heart goes out to you. That is no way to live. I will pray for you to find a solution quickly.
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Post by caprice on Jan 31, 2015 9:31:26 GMT -5
I am so glad to see you here, but so sorry for the misery you've been in. I have no input on a solution, MUCH better minds have already weighed in I hope you see permanent relief with the coming plan of attack, AND I hope to see your posts more often. Wishing you the very best...
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Post by Leonie on Jan 31, 2015 14:06:21 GMT -5
I have been missing you have been very much on my thoughts! I am super glad the hernia is repaired, but so sorry you did not get the needed plastics.
I assume you have added in the good probiotics? VSL#3 has made a big difference to my bowels, but I never had a problem like you are having! Good grief, no-one should have to live like this. Keep bashing down doors until you get the right help. And yes, follow every possible avenue.
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Post by west4thavenue on Feb 1, 2015 11:26:26 GMT -5
Maggie,
I am so sorry to hear this. I had hoped that your absence was an indication that you had overcome your problems and were busy living your life!
Now that you have been pointed in the direction of some resources, please do try to keep us posted on your progress. My heart and prayers go with you.
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Post by louteg on Feb 2, 2015 19:02:46 GMT -5
Maggie, I'm Sorry to hear everything you have been through, praying for you. NYB send me to Pomp's GI when I had bad TMI issues in December, I love her. Dr. Sharaiha didn’t make me feel stupid or crazy; she listened and worked with me until we found out what’s wrong. So I am glad you listened to NYB and called Dr. Pomp's office. That standard 125cc and 175 cc limb has different effects on different people. Keep the faith they will figure it out and you’ll get your life back. Love seeing you back!!
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Post by michellemj on Feb 8, 2015 18:59:32 GMT -5
Have you been tested for SIBO?
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