Seeking Ostomy Surgeon in Maryland or Nearby

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clover12

Hello,

I lost my large intestines in 2012 due to RA. My RA is so bad I've lost most of my organs. It's now in my kidney, my left lung, my liver, etc. My wrists are so bad I struggle to care for my ostomy because I cannot shower alone, open anything, cook, drive, clean, or do laundry. I'm homebound.

Can you tell me who you see here? Who did your surgery? Do any of you have a Jpouch? If I can't find a surgeon to do a Jpouch, I'm going to die because it hurts so bad just to empty my bag, so I don't want to even drink and eat.

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w30bob

Hi Clover12,

Are you sure you lost most of your organs? I don't think you can be alive if you lose any of the major organs. You might want to check on that. Where are you being treated now? Everyone thinks their surgeon is "the best" so I won't throw that term around. Sounds like you need some serious care. If I were you, I'd either be seeing someone at Hopkins (Baltimore) or Georgetown (Medstar in DC). One of the better colorectal surgeons in the DC area is Thomas J. Stahl at Medstar Washington Hospital Center. He works with a team of surgeons there and they're all good. I haven't used a surgeon lately from either Hopkins or Georgetown, so I can't drop any names from those places. Now go get some care sister!!

Regards,

Bob

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clover12


Well, I've had 28 surgeries and they started taking organs from a part of one kidney, part of my liver, and stomach. I lost my uterus at 26 right after our daughter died when I was 5 months pregnant. My ovaries, my appendix, my gallbladder. My spleen. I can't even count the number of lymph nodes they have removed.

My pancreas is struggling and my mom and both her sisters died of PC cancer, so they watch that like a hawk. I know where I lost my weight from because I was 80 lbs when my surgeon operated and my colon was dead from RA. He saved my life. He was chief of staff of Siana and Northwest. He was the first to do an ileostomy laparoscopic in 1990. He did mine that way even though my colon was 9 lbs and 10 feet, the size of a 200lb man's wrapped around my liver, pushing my stomach over, which is why I lost part of it. That doesn't count the 5 minus surgeries, the capsulectomy, and ect... I know what organs you need to survive and I'm hanging on by threads, which is why I need to be able to eat. My surgeon retired and was a surgeon for 50 years. So I do not have one and am not seeing one. I do not trust many of any doctors because of what I've been through. A lot of stuff I have gone through could have been prevented had I been diagnosed right and when I started with RA.

Past Member

Clover is a lucky name for a mate. What doesn't kill you makes you stronger is true. Some of us are missing body parts and don't have an ounce of fat. I like to listen to music while reading my Bible and enjoying the day. We learn how to adapt sooner than later. I use a holster two-piece. Here in Baltimore, the rabbits love eating clover. Jer from Baltimore.

w30bob

Hi Clover,

First off.......I apologize for my half-smart-ass post, as I really thought you weren't sure of what you were talking about. My hat's now off to you sister........after reading your second post I fully pulled my head out of my ass and knocked off all the self-pity I was feeling for my condition. You are one serious fighter and I applaud your efforts!

Now if I were you, I wouldn't be concentrating on finding a single surgeon. What you need is a TEAM of specialists working together to get you the best outcome. And that's what's happening at all the major hospitals and health institutions these days.......too much success. I'm with you on not trusting doctors. I've had more than my fair share of idiot doctors, and my respect for the profession has gone from infinite to almost none. What I thought were once almost god-like people I now consider just shills for Big Pharma. Make a diagnosis and pick from the Drug Wheel of Chance. Unfortunately, the only way to get to some of the drugs that do help is through a doctor. 'Nuff said, I guess.

From a team standpoint, the best places for you are either Mayo Clinic or Cleveland Clinic. I went to CC more than a couple years back when I was in WHS waiting for a bed in Hopkins to open up for possible surgery for severe abdominal pain I was having. After a week of dicking me over and still no bed, I called my Mom and told her I was busting out of WHS and we were driving up to Cleveland. I called them ahead of time, and nine hours later I was standing in their main lobby. I was met by a team of 12 specialists who immediately took care of me. It ended up being a Psoas abscess from a bowel leak, so they stuck in a drain to buy me some time with my Hopkins surgeon and sent me back home. They were very thorough, and I wouldn't hesitate to go back there again if need be.

In the Maryland area, your two best bets are Hopkins and Georgetown. Both have internal medicine teams that are really good. My main points of contact at G-Town and Hopkins are Dr. Amy LeStrange (202-295-0570; for appointments) and Dr. Mark Donowitz (410-933-7495), respectively. Amy still takes new patients, but I'm not sure about Donowitz. If he's not, you'll need to schedule an appointment with any doc in GI, and then when you get there, they'll get you in touch with the right folks. Both are teaching hospitals, so faculty tends to change pretty frequently. But I've found both places consistently maintain good staff. Also, talk to the nursing and physician's assistants you'll meet for their take on who's the best for what in each group. I find those folks are pretty open about that stuff if you approach them nicely. If you really just want a surgeon to talk to, the guy with the most experience with IBD-related issues in the Maryland area is Dr. Tom Stahl at Medstar Washington Hospital Center. He's a colorectal surgeon that has seen it all. He has an office in Clarksville as well as at the hospital in DC. His number is (202)-877-8484. He works with a team of surgeons that are all top-notch, but I haven't talked to them since my last operation in 2014, so I'm not sure if he's still working with Drs. Ayscue and Smith anymore.

Let me know if this info helps. If not, I can do some more digging and make a few phone calls. Again, sorry for my initial sarcastic tone in my first post......won't happen again.

Regards,

Bob

 
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Tickpol

I had my ostomy work done by Dr. Bashir Safar at Hopkins. This was my 19th and 20th surgeries. I had a lot of damage to my abs and skin because of exposure to gastric juices from an abdominal fistula. I required a good bit of reconstruction. Dr. Jonathan Sacks (Hopkins Plastic Surgery) performed the close.

Best of luck,

Tickpol

w30bob

Yeah, I had an appointment scheduled with Bashir last year when they thought I had a stomal hernia. He ended up not showing up due to an emergency, but it turned out it wasn't a hernia.....so I didn't need his services. But he did come highly recommended by a bunch of folks I talked to. I believe I tried to see him at the Greenspring Station office, but I'm sure he can be seen at other locations.

Regards,

Bob

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