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help I need advice


Mon, September 21, 2009 12:00 AM

Hi ,

I have severe crohns and colitis. For over 20 yrs. Im 38 and last november I had the worst surgery out of all my crohns surgeries. They went in to take a piece of my colon. And found it ruptured at 4 pts. and took it all. There is alot more to my story. But what I need advice/help with is . I have always had major diarea . But the problem now is like it feels like I go all acid. The skin is gone and it is all raw . Blood raw. With actual like rips coming out of butt. They said not to wipe or wash. To clean and wipe by spraying with water. They have tried everything to slow diarea down. Nothing works. Getting remicade. small intestine is covered in crohns. And after all surgeries not much left of rectum and large intestine. But they will not put in bag. Life so painful. dont know what to do. I have a very loving family. But still feel so alone. Does anyone have any advice. Thank You

FPO sparky
Joined Sep 21, 2009

Mon, October 05, 2009 12:00 AM

 Reply posted for sparky.

Have you tried any anti-diarrhea medicine?  When I first had my j pouch put in, I had the same issues you are having.  My surgeon prescribed Limotil and it really made a difference.  I still take it every now and then if I have issues.  Also, she recommended using diaper rash cream w/ zinc oxide on any raw skin to help it heal and provide a barrier for the future.

Good luck - I hope you get some relief soon!

FPO atlgatorgirl
Joined Oct 5, 2009

Thu, October 01, 2009 12:00 AM

 Reply posted for sparky.

I have a ileostomy and I heard this at a J-pouch meeting.  Put the ointment on before you go to the bathroom.  It will at as a barrier between your skin and waste.  I hope this will help.  Sorry I do not know what kind of ointment they used.

Also if the doctor does not want to give you a ostomy, get a second opinion.

 

FPO ronkrson
Joined Aug 4, 2008

Tue, September 29, 2009 11:43 AM

 Reply posted for sparky.

Sparky,

I had the same problem complicated by multiple fistulas and abcesses.  The only solution I had was surgery and an ostomy.  The pain was so bad, I didn't care.  I said, "Do it.  Get me out of pain."  That was over 20 years ago.  No pain.  None.

I did have a doctor a couple years ago tell me he could reconnect my bowels and get rid of the bag.  I remembered the pain and said, "I don't think so."  I won't risk it coming back.

I am  not going to tell you life with a bag is all skittles and beer.  It certainly has its drawbacks, but whenever I get down about having it, I remember the pain.

I would be curious to know why you doctor thinks you aren't a candidate for an ostomy.  If he gives you a run around, find another doctor you can deal with.

Just my two cents...

FPO jjbiener
Joined Sep 21, 2009

Tue, September 29, 2009 12:00 AM

 Reply posted for Magpie.

If you can call an "ostomy" nurse at a local hospital. They have all kinds of ointments and medications that they use around ostomy sites and you're dealing with similar tissue. I don't know if the zinc oxide ointments ( diaper rash) helps but you can ask. Powders are ok but soak through pretty fast. The ointments can be more "waterproof", but check first as some are easier on the skin then others.

FPO titan1
Joined Sep 1, 2008

Mon, September 28, 2009 4:46 PM

 Reply posted for sparky.

My daughter had a complete colonectomy in June, and only had the bag 5 weeks.  Because of the loose stools and frequency,  her little bottom is raw! She screams and cries due to the pain. We have found that Caldescence powder was helpful, a little. The best advice so far was to cut out the sugar and sugary drinks, like Gatorade, etc. By doing that her frequency has slowed a little bit, which has helped the rash issue. It is still day to day with her, but that was the only thing that we saw that made some difference.  

FPO magpie
Joined Sep 28, 2009

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