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Are you on meds after permanent ostomy?

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Posted 12/5/2011 7:21 AM (GMT 0)
Hi guys! My hubby is 5 weeks post op and doing great. He has an ileostomy and says he has no regrets. So, he has his a follow up appt with his GI this coming Friday. His small intestines are clear of CD right now. I think he might of had CD is his small intestines when he was younger, but only has had it in his colon and rectum the last few years. Now with his colon and rectum out, he doesn't have acctive disease right now. but I know CD can come back...and that scares me.

Soooooo, for those of you who had an Ostomy for Crohns Disease and no active disease, are you on any meds? Or, were you not in meds and did the disease come back? What would you recommend?
Posted 12/5/2011 1:22 PM (GMT 0)
I am not on any meds, but I don't know what I would take, as I already went through pretty much all of them before surgery..... my liver didn't really like 6MP, so I couldn't get up to a high enough dose, and I took 3 different tnf blockers (remicade, humira, and cimzia), and asacol (which would probably be pentasa for small intestine) never did much of anything for me. I am pretty happy not to be taking any drugs now.

But I never had small intestine involvement, so I wouldn't go by me..... did they do a biopsy from his ileum w/the surgery? They did one for me, and it was clean, good sign.

Glad to hear he's doing great, and interested to hear what the gi says.
Posted 12/5/2011 1:43 PM (GMT 0)
No meds for hubby other than the usual for other things (cholesterol etc.)  Since he was on a pain management program prior to surgery he needed tapering off those meds but otherwise all the UC stuff stopped the day of surgery.

Oh and by the way and most importantly...happy to hear he is doing so well.  Hopefully the CD is a thing of the past and nothing to be concerned about in the future.  You will both be enjoying Christmas this year for sure. 

Hubby is coming up on a year "stomaversary" in 12 days and we were talking last night how great it is to have this all "behind" us now and how good life is.  We spent about 4 hours outside decorating yesterday after lunch and he needed to come into the house once for a normal bathroom break.

Tomorrow we will be spending a full long day at Epcot for the candlelight processional, dinner and fireworks to end the day.  Can't remember the last time we did something like that!  You will both enjoy life so much more now.  Granted he has a "new normal" now but to be free of pain and not chained to the bathroom is so liberating overall.

Post Edited (Another UC wife) : 12/5/2011 6:49:26 AM (GMT-7)

Posted 12/5/2011 4:34 PM (GMT 0)
Blueglass, sounds the the same as my hubby...he went through all those meds too. Strangely, when he tried Asacol several years back, he got so sick.

Another IC Wife, that's wonderful! It's hard being the wife of a Crohnie or IC husband. But ill tell you, our relationship has gotten stronger over this last year. He thinks I'm weird that I get excited to help him change his appliance..:). We're only 33 and 31, but I feel like we've lived a life time together.

It's nice to hear that life is so much better with an Ostomy!! It's been so much better for us too! Cant wait for a new "normal" life!
Posted 12/6/2011 6:29 PM (GMT 0)
I had my ileo doen 20 years ago for CD and have been on azathioprine since 1995 except for a 12 month period which was bad mistake as had really bad flare that took 6 months to get under control. When I had ileo done I also had CD in small bowel but colon was so badly damaged not much more they could do at the time.

As you know with CD it can come back anywhere and as your husband has had disease in his small bowel before it would maybe be good idea to speak to his GI again to ensure he is monitored closely. Maintainence meds are good idea to keep the CD in remission. Has yyourr husband tried all the meds available?
Posted 12/7/2011 12:31 AM (GMT 0)
So glad your hubby is doing well! He's very blessed to have a loving, supportive wife, like you. I don't know how I would have gotten through 7 years of being sick with Crohn's and 7 surgeries without my wonderful husband! :-)

I have not been on any meds since my proctocolectomy in 2006. My disease was always in the large intestine and rectum, and I've been disease-free since they were removed. My gastroenterologist told me that it was not necessary for me to take any maintenance medicine if the disease was not active.

I pray that your husband continues to have a smooth recovery and stays CD-free!
Posted 12/7/2011 1:01 AM (GMT 0)
Thank you flchurchlady! It doesn't change the way I see my husband or love him any less...probably more because I see how strong he has tried to be through all his sickness. That's why I think you all are amazing and people truly do not understand how grateful they should be to be healthy and be able to enjoy the simple thigs in life like running errands without being stressed about a bathroom!!

Hes tried pretty much all meds...Asacol, colazal, remicade, Humira, 6mp.....Hmmmm us there any other maintenance drugs that I could research before meeting with GI?

I will see what his GI says about meds this Friday. I always run things Hu you guys first because you guys always have great advice!
Posted 12/7/2011 12:28 PM (GMT 0)
As the one who has been sick and has been loved and supported through it all, it makes me love and respect my husband more than I could have ever imagined was possible. "In sickness and in health" takes on a whole new meaning when your spouse is given the "sickness" test and passes with flying colors! :-)

I think you've got all of the meds covered, except for worms, yes.... worms! Eating worms is another treatment that they're using for Crohn's. You can read about it here: http://www.webmd.com/ibd-crohns-disease/crohns-disease/news/20040519/wormy-cocktail-fights-crohns-disease

Hopefully, his GI will say the same thing that mine did. No active disease, no meds needed. That was such a happy day for me, and I hope Friday is a good one for you both, too!

Keep us posted!

Cecilia
Posted 12/10/2011 5:14 AM (GMT 0)
Had follow up appt with GI and surgeon today. GI said to continue Humira until fistulas are healed. Then we can look at more non aggressive medication. Good news is it looks like fistulas are getting better...drainage is much better and surgeon took out 2 seton bands right in the appt.

Anyone have any experience with Humira healing up their fistulas?
Posted 12/11/2011 12:46 PM (GMT 0)
That makes sense. Fortunately, I didn't have any fistulas, but I have heard that all the TNF blockers (humira, remicade etc) are very good for healing them...

Hope they heal soon.
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