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I'm new to the forums. Would like to initiate my post by saying hello!

To get to the point, I need some suggested surgeons for Cleveland Clinic. I'm from Michigan. In January of 2013, I had a surgery to remove part of my small bowel. Originally, things seemed satisfactory. But after a few days ensued, I became increasingly ill and a CT scan revealed the bowel connection had came undone, leaking bowel contents in the abdomen. I had an emergency surgery and was forced to live with an ileostomy. I'm going to spare you details on the ileostomy, but let me stress that it's been undeniably horrendous. Even the doctors agreed I had a tough situation.

When my six month wait concluded, I was ecstatic to have my takedown. In July of 2013, I had my takedown and it seemed well at first. But a few days passed, and yet again I became very sick. Once again, my bowel had became disconnected. I had another emergency situation and I was replaced with an ileostomy.

Flash forward to now. I'm still living with an ileostomy, and miserable. I'm about to finish school for my career. I've been telling myself I'd wait until school concluded to try again. Unfortunately, I have a limited amount of small bowel left at this point. That's why it has to be perfect and right this time. I'm going to go to Cleveland Clinic since it's only about 3-4 hours away. The GI doctor I'm seeing at UofM in Ann Arbor, Michigan knows I'm doing this. He told me to go ahead with making a colorectal appointment at CC.

That's where you guys come in. Could you please recommend a surgeon who specializes (or would be a perfect selection based on my history) in the field for my needs. I'm so unhappy, and there's no self-acceptance for this for me. I need my life back prior to my ileostomy, and I'd do anything to achieve it. I'd even go as far to live entirely without a small intestine (and have the large intestine be the connection), or have a transplant of some small intestine from family.

If you need additional information, feel free to ask. I just want things to go right for me actually, so please suggest a surgeon at CC right for me.
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Hi Matt,
Can I resume what I understand here...you had surgery on your small bowel to remove a small piece (why? Polyps? obstruction? Disease?), the sugical site dehyssed (came undone) twice a
nd both time they gave you a horrible ileostomy that is making your life miserable.
Two questions here...What was the surgery for? and are they going to reconnect you to your large intestine at takedown? It sounds like your colon is intact and in place in which case you should be ok..
But why have you come unconnected twice? Are they looking into the why cause of it?
There can be couple of reasons that should not be ignorred.
One is a healing disease call D'heller's-Danlos disease. It is a lack of collagene production in the body and basically means that when you are cut and stitched you do not heal and things fall apart (I am simplifying here)...It happens to me often post op and is the cause of all of my repeat surgeries...
No one ever asked the Why question...They just kept redoing the same thing with the same result...things fell apart. The suturs do not hold...Anything that dissolves means that whatever they sew falls apart.
In which case you need permanent sutures which come with their own set of problems (dangers of fistulas or infection)...
Please, no matter who you choose to do the surgery, make sure that he takes this problem seriously and doesn't blow it off...better to be a pain then have to go through another useless surgery again.
I am having yet another surgery to reattach my pouch to the abdominal wall (the 6th time) because no one ever listens to me...but since the diagnosis they at least take the problem seriously!
Sharon
Holy ****! Would that explain why surgical incisions take so long to heal? Usually my abdominal incisions will come open and it takes many months to completely heal!! They never actually figured out why. In retrospect, I wish they would have. I think my surgeon chalked it up to being unhealthy everytime. But, this could be possible. And it's certainly something I'll bring up to Remzi.

As for why I had the surgery originally in January 2013: I was having pain in my right hip area. I had spent many months with pain akin to muscle cramping. Initially, the surgeon was reluctant to operate. He wanted me to be handled non-invasively. But as time progressed, the frequency and severity of the pain grew.
I'm sure you won't remember me; I didn't post nearly as much as I should. But I made an appointment a few months ago at Cleveland with Remzi. He convinced me he could successfully take down my ileostomy and would get me better. My surgery is July 14th. I'll have a temporary ileostomy for three months but then he will do a permanent takedown. I meant to come and tell you guys originally after the appointment, but I'm generally super busy. I'll keep you guys updated after the surgery. As you can imagine, I'm ecstatic to get this takedown!
Hey Matt!

I'm 21 and just had a pouch redone by Dr. Remzi. He didn't initially make it so he had to fix a bad pouch someone else made. The surgery went great! I had mine June 15th, so I'm almost 3 weeks out. He's a nice guy and I can't complain about how any of it went. Sounds like my plan is similar to yours. If all goes well, 3 months I'll have the permanent takedown. I'm tired of the loop ileostomy as well! Not fun! Stomach feels great with incision, but starting to feel pain in the anus. From what I hear on this site that is normal but checking Monday.

Hope your surgery goes wonderful!! It'll be over before you know it! Happy 4th of July

Shane

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