Is my doctor decision a sound decsion or are we delaying the inevitable

MTK957

New Member

Joined : Jan 2011

Posts : 11

Posted 1/12/2011 5:08 PM (GMT 0)

12/10/10 I had my 2nd bowel resection. They removed 8"of small and 4" of large. As I recovered the first few days seemed good, then as I was starting my low fiber diet prior to being released I began to have pain on right side just above lower side of rib cage. I was released and 3 days later readmitted with 104 fever. after tests confirmed that my bowel was leaking where they reattatched. so now i'm on TPN and IV meds(Zosyn,Fluconazole,Percoset,and Valume). I also have a drainage tube placed in abscess. The current treatment is as mentioned above and sips and chips too continue for 3 months!!! If at that point leak hasn't healed itself then we do surgery. Not only is it near impossible to meet the limited intake,but very hard to maintain sanity. My question is has anyone been through this and has the leak healed itself. I feel it's quite a stretch of wishful thinking. I also feel that it's not gonna work! I'm on day 6 and drainage discharge is relatively the same. approximatly 20mL/24hours. Please somone tell me this is gonna be worth while. I'm currently collecting 80% pay which is getting us by, but in 3 months i have to go to long term which pays 60%. Not gonna be good enough! The surgery will require minimum 6 months recovery if all goes well. I don't know what to do.

Becky77

Veteran Member

Joined : Dec 2005

Posts : 1768

Posted 1/12/2011 5:38 PM (GMT 0)

Can you get another surgery consult...for a second opinion? Maybe just talk to your GI and let them know what the plan is, and if they agree.

I always thought that when there was a "leak" they went in right away and fixed it. Maybe I was wrong though...

Good luck to you.

rlsnights

Regular Member

Joined : Apr 2006

Posts : 449

Posted 1/12/2011 7:27 PM (GMT 0)

There is no active attempt to treat your CD with maintenance medication? Hm.

I agree that getting a 2nd surgical opinion from someone who specializes in treating IBD (if possible) may be very helpful.

sorry to hear about the $$ aspect. If you are anywhere close to retirement age and it would improve your situation you might just want to think about retiring early. Especially if it reduced your share of your health care costs significantly.

aronk

Regular Member

Joined : Jun 2006

Posts : 229

Posted 1/12/2011 9:04 PM (GMT 0)

MTK957--I've been through this. I had my very first resection in Jun 2009--did great initially was discharged in 4 days. Two weeks later I was readmitted because of a leak. I had 4 CT/percutaneous drainages and 4 hospitalizations over the next 6-9 months. I also had 3 different PICC lines in where I was receiving Zosyn intravenously at home. They ended up taking the drain out (too soon) and I ended up with a fistula from where the drain was because I was still leaking.

Saw a new surgeon in March 2010--who told me that if you have Crohn's a leak will not heal without surgery. So, on April 1, 2010 I had my second resection surgery.

I just a colonoscopy on January 5, 2011 and my Crohn's is already active again at the Ileum. I will be starting Humira in a few weeks.

Good luck to you! I would seek a second opinion if possible!

MTK957

New Member

Joined : Jan 2011

Posts : 11

Posted 1/14/2011 2:17 AM (GMT 0)

ARONK, Sounds like what I thought it would. I don't beleive its gonna heal itself either. Waiting for family Dr. to get back to me about a referral to Mayo Clinic in Rochester,MN. He seems to be draggin his feet. Problem is that my current medical treatment is an affiliate of Mayo Clinic so I'm afraid I'm Gonna get the run around!

CrohnieToo

Veteran Member

Joined : May 2003

Posts : 9448

Posted 1/14/2011 3:00 PM (GMT 0)

Our experience years ago was that Mayo docs were NOT afraid to speak their mind and disagree w/a colleague in person w/the patient present.

But we haven't encountered that type of situation our last few visits to Mayo and I don't know that their doctors still have that independence and "moxie". The entire medical climate has changed in this country - even at Mayo.

MTK957

New Member

Joined : Jan 2011

Posts : 11

Posted 1/18/2011 4:23 PM (GMT 0)

rlsnights
They are unable to suppress my immune system at this time because they are encouraging my bowel to heal.

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