Is this surgery really necessary?

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Regular Member

Date Joined Mar 2008
Total Posts : 43
   Posted 3/8/2008 1:28 AM (GMT -6)   
Hello, I was dx with systemic scleroderma in 2000. Until now, my esophagus was the only internal area affected. Recently, I have become seriously constipated. My doctor has tried to manually disimpact me. I have been on several different regimens to evacuate. I  even drank the gallon jug of Go litely that is used before colonoscopies on two different occasions. And after each time I had xrays which showed that I still had a very large amount of stool in my colon. My doctor said that my use of pain meds for the scleroderma has caused the constipation. However, the ability to evacuate is due to adhesions, the sphincter muscles and nerves not working properly due to scleroderma. Now knowing all of this, I have decided to go ahead and have surgery to remove my colon and have a stoma. But then my mind starts thinking and I really need this surgery. Could I just live with chronic constipation? The I go and look back at all of the reasons why the stool should not be lodged in my colon and the chances of colon cancer risk because of this packed stool in my colon. And other reasons for the surgery. Has anyone else waivered on the decision to have the surgery even though it all makes sense? I think because this is going to be a permanent stoma and not reversable is why I want to make sure that this is absolutely necessary. By the way..I did get an opinion of three surgeons. But two of the three surgeons were out of the same group of doctors. Any comments on this would really be appreciated. I am just so nervous about this entire procedure. Thank you, HisWill

Regular Member

Date Joined Mar 2008
Total Posts : 43
   Posted 3/8/2008 9:44 PM (GMT -6)   
Ash, Thank you for your reply. It made a lot of sense to me and I have thought of the risk of cancer if I dont have the surgery. I have pain 24/7 from scleroderma. And I accept it as a way of life for me. So adapting to the stoma is something that I know I will be able to do in time. My doctors have told me that I will feel better once this constipation problem is taken care of. I know that I am the one that has to make the final decision but I think it would be wise that I have the surgery now before it ends up being an emergency surgery. Again, thank you very much for your helpful post. God Bless you!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/8/2008 10:01 PM (GMT -6)   
i think we all wondered if surgery was the right thing, even though medically we knew it was. I had UC, so i had the opposite problem you do, but the same fix.
It will be hard to deal with at first, but after a while, you won't even remember it's there, and it will be worth it to get rid of the pain.
good luck!

Regular Member

Date Joined Jul 2006
Total Posts : 212
   Posted 3/9/2008 12:31 PM (GMT -6)   
I don't regret my permanent colostomy or rectum removal at all,in fact it gave me back my life. I wish you Good Luck in your decision whatever it may be.

  1. Colostomy May07
  2. Rectum removal and hernia repair Oct 07

Regular Member

Date Joined Jan 2007
Total Posts : 300
   Posted 3/9/2008 8:37 PM (GMT -6)   
I just had my surgery on 2.25.08 and I although I am still recovering...........I do not regret it. Nothing is more stressful than your body not operating properly and making you sick. The sickness in your body is not good for your body and then the stress that it causes on your body isn't good for you either. I am relieved that it is over because there was alot of stress before I did it. I was undecided all the way up to them putting me to sleep. I already "feel" better and that in itself tells me that I made the right choice. Plus, I am under the impression that a doctor will not recommend you to surgery unless it is medically necessary
Pancolitis - July 2006
Surgery - Temporary ilestomy on 2.25.08 at Cleveland Clinic. Next surgery in 6 months
Medications:  Predisone - 5mg (and tapering to zero)
Supplements:  multi-vit, calcium
Reason for surgery: Steriod dependent and allergic reactions to imuran and 6mp. Elected not to try remicade.

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