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Ostomy/ for those on Maryland or around

Posted by clover12, on Tue Jul 16, 2019 3:49 pm

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 ect... my wrist are so bad I struggle to care for my ostomy because I can not shower alone, open anything, cook,drive,clean,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.

Reply by w30bob, on Tue Jul 16, 2019 5:58 pm

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  

Reply by clover12, on Tue Jul 16, 2019 6:58 pm
w30bob wrote:

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  


Well I've had 28 surgerys and they started taking organs from RA 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 amount of lymphnodes they have removed.

My pancreas is struggling and my mom and both ber 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 live he was chief of staff of Siana and Northwest he was the first to do a 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 surgerys the capsulectomy and ect... I know what organs you need to survive and in hanging on by threads which is why I need to be able to eat. My surgeon retired and was a surgeon 50 years. So I do not have one and am not seeing one. I do not trust much of any Dr.s because of what I've been through.  A lot of stuff I have went through could have been prevented had I been diagnosed right and when I started with RA. 

Reply by Nobagjerz, on Wed Jul 17, 2019 7:43 am

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 a ounce of fat. I like to listen to music reading my Bible and enjoying the day.we learn how to adapt sooner than later. I use a Hollster two peace.here in Baltimore the rabbits love eating clover.jer from Baltimore 

Reply by w30bob, on Wed Jul 17, 2019 12:57 pm

Hi Clover,

  First off.......I appologize for my halft 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.......to 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 thru 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 here 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 an 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 witht 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 sarcasic tone in my first post......won't happen again.

regards,

bob

Reply by Tickpol , on Thu Jul 18, 2019 11:20 pm

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. Johathan Sacks (Hopkins Plastic Surgery) performed the close. 

 

Best of Luck,

 

Tickpol

Reply by w30bob, on Fri Jul 19, 2019 11:17 am

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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