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rhorho
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/18/2008 1:45 PM (GMT -6)   
I'm new to this site and was wondering if anyone has experienced my problem. I was diagnosed with CD in 1992, I had a colectomy with ileostomy in 2005. My rectum was left. I have been having pain and pressure in my rectum. I had a scope yesterday through my ileosomy...the crohn's is back at my stoma, but they tried to scope my rectum and couldn't get in. Any thoughts, ideas or has anyone been through this? Has the rectum prolapsed or closed? I won't know from the Doc until after my gastro appointment tommarrow.Thankyou. rhorho

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/18/2008 5:45 PM (GMT -6)   
Rhorho,
Welcome to Healing Well. I'm so sorry you're having pain and that the Crohn's has returned. shakehead That's a bummer. Are they going to start you on some medicine? I had my rectum removed, so I don't have any insight into what happened there. Hopefully, someone on here will be able to help.
Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/19/2008 6:39 AM (GMT -6)   
Welcome to the site! Let us know how things go at your appointment. I cannot give you any answers, sorry, since I had my rectum removed recently...when I did have it with an ileo I was on many drugs to keep things quiet...was the rectum giving you problems before the colectomy? I hope they can help you with the pain. Keep us posted!

rhorho
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/20/2008 8:16 AM (GMT -6)   
Thankyou both for the welcome, I had my EGD yesterday and thankfully the disease has not progressed upwards. In answers to your questions, my rectum always bothered me. When they did the ileostomy they told me they saved my rectum to potentially reconnect me, however after doing research after the fact, I don't think it is possible even with a j-pouch. Since my surgery, my rectum has been having a "full" feeling on and off and I feel like I have to use the bathroom all the time...which of course I don't. My docs never put me on any preventative meds after the surgery and now the ulcers on my stoma are severe. I am getting some skin breakdown around the stoma that I assume is from the disease. I have read about powder..any suggestions because this new G.I. (insurance change) doesn't seem to have a clue. He hasn't even put me back on steroids or anything. I am extremely worried and frustrated. Has anyone had the disease re-occur at the stoma site? Thankyou for your thoughts and concern, I just feel like I need someone to relate to. I don't know if they will remove my rectum or not. Thoughts and opinions definitely wanted!!!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/20/2008 8:49 AM (GMT -6)   
Typically a jpouch is not recommended for a patient with Crohn's. Since you have decided not to be reconnected you might want to talk with your GI about having your rectum removed, especially if it's bothering you. Since your Crohn's can always manifest from the mouth to the anus, I imagine with your current Crohn's symptoms at the stoma that you will need to aggressively treat those symptoms with medication.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


rhorho
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/20/2008 2:14 PM (GMT -6)   
Thankyou for the advice, I guess I always hoped that I would be reconnected one day. It sounds like I probably need to have my rectum removed. I see the G.I. 12/2/08 and will find out more then. Thankyou again for the reply.

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 11/21/2008 12:09 AM (GMT -6)   
rhorho said...
Thankyou for the advice, I guess I always hoped that I would be reconnected one day. It sounds like I probably need to have my rectum removed. I see the G.I. 12/2/08 and will find out more then. Thankyou again for the reply.
I did too. But, you know, after almost 20 years with an ostomy, it's become such a "normal" part of me that I'm happy with the way I am. I had my ostomy at 28. Though I thought, in the beginning, that the ostomy would affect my career, having the pain from Crohn's affected it more. I've been the most successful  since I had an ostomy.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/21/2008 3:46 AM (GMT -6)   
Rhorho,
Since you're having a Crohn's flare up, I think you need to get started on some medicine as soon as possible, and personally, I wouldn't wait until December 2nd to get started. I'd call the doctor who did the EGD and leave a message for him to call you back. While you've got him on the phone, tell him that the powder that goes on the skin around the stoma is called Nystatin.
Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


jmrn
New Member


Date Joined Nov 2008
Total Posts : 14
   Posted 11/21/2008 9:37 PM (GMT -6)   

Hi Everyone:  Also new to this  site.  My father very healthy at age 75 through a blood clot to his superior mesenteric venous system 1 yr ago.  This resulted in dead sm bowel, and ended up with an ileostomy.  He still has most of his asending colon,transverse and decending colon.  I know that approx 8-10 ft of his small bowel was removed.  Very long hosp stay and many problems since.  He has a very high output from his ostomy I would guess at least 4 liters or more per day.  He eats, but is also fed through a PEG tube to give his extra nutrition.  When trying to decrease his PEG feeds he becomes dehydrated with low mg levels and becomes ill.  He is now considering having an anastomosis but we are all very concerned about uncontrollable diarrhea!  This would be horrible for him.  Has anyone had any experience with connection of sm bowel (what he has left) to the asending colon.  Remember his stool from his ostomy is like water.

Any help would be great.

Jackie

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