Maintenance Drugs for Crohn's Disease after surgery

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Penguins7
My Questions is once Crohn's patients have had the ostomy surgery do you stay on Crohn's maintenance drugs? If so why?
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MissMeganM
I'm wicked curious about this too. I go to my first GI appt tomorrow since The Great Surgical Drama six months ago (can you tell my adventure into Ileostomyland was a complete surprise? lol). I have Crohn's and since my ostomy surgery I feel fine. I don't plan on LETTING them put me on any of that crap unless that changes. I've talked to a lot of people with ostomies and Crohn's, and it seems like most of them are medication-free. The ostomy is what helps manage their disease so they don't need it. We shall see what the GI says about it tomorrow, I guess!
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weewee
to MissMeganM
I am not a full member any more if you would like you can chat with me on Skype weewee1967 that and if you use yahoo messanger douglasbarnett now take out the vowels in my name and add yahoo dot com I would like to chat with you also I have had my colostomy for 4 years with all the ups and downs
doug
Ecoenergy
Hi Rod, I had surgery to remove my colon last November. My second surgery. In essence the infected section of me was removed. Once the pain from surgery was under control I was off any medication. I have not taken any medication to treat my crohn's, though I tecnically still have it. I assume I will not take any unless the symptoms start to come back. Crohn's seems to effect everyone differently. During surgery the doctors will remove any infected sections. If the symptoms come back doctors will try and treat the new infected areas will medication. Generally speaking surgery is a last resort. Being on meds is a real pain in the *** as their are many side effects. After almost 6 yrs of tablets and injections its great to be free of them again for however long it lasts lol.
 
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Past Member
So to sum up: One still has IBD (Crohns, colitis) even after a surgery removes effected (affected?) bowel.

As to maintenance meds, it would depend on the situation.

I am taking imuran for maintenance. my gastroenterologist wants me on humira, but i will not unless there is a serious change for the worse.
kulkitty
HI penguins7,
Since i have had my ileostomy in 1998, I have not had to take any meds for Crohns. I am truly thankful because I am sooo bad at taking any kinds of medications. LOL

Kulkitty
Penguins7
Hi Kulkitty, Congrats that is awesome. I am not big on taking meds so i hope i can have the same luck as you did. Take care.
Penguins7
Hi Ecoenergy,
Great news with no meds. I agree that they are a doulbe edge sword as they only mask the problem and dont cure it. Pretty much how all Gastros think becasue if they cured us they would be out of work. I too have been med free since my surgery in Oct 2012. My main problem is that i had a pelvic abscess as a result of my surgery and it has been slow to say the least in healing. The wound is still 10cm deep and with my surgery and all the inflammation not healing very well. The surgery has allowed me to get back to work and start living again.
kulkitty
HI penguins7,
Wow, the abcess is not healed yet.What can be the cause/ I remember I could not do anything for around 2 months. Could major activity have anything to do with it. I wish I had ideas to help in your recovery.
Kulkitty
Penguins7
Kulkitty,
They say the cause is a result of excess inflammation from my surgery plus my Crohns can surpress immune system and stall healing. It is frustrating to say the least. If anyone has any healing suggestions for abscess please advise. Penguins7
Past Member
I have Crohns and an ileostomy since sept 2012
I have stayed on the Azathioprine (100mg per day) after the operation.
I have stop taking it six weeks before the reversal.
Then i will be back on 100mg of Azathioprine for three years.
If everything stays normal then the Drs will decide to stop the medication after this time.
But if i get a flare up the medication will be revised.
The White cell count for me has stayed the same at a normal healthy level for the past 8 months.
Penguins7
I am not familiar with that Crohn's medications - Azathioprine (100mg per day)as i thought at one point i had taken all Crohn's medications. Is it a maintenance drug? If so what are side effects?
Past Member
Azathioprine is the generic name for imuran
vikinga
This is VERY interesting to me!! So even if you have Crohn's or IBS or such a reversal is an option??? I was never definitively diagnosed with IBS but it has been hinted at. How can one test to see if that is so?
Thanks
L
Past Member
To test for crohn's or IBS you will need to find a Gastroenterologist Doctor..and they will have to do a colonoscopy to check your digestive track for signs of IBS or Crohn's Disease...they put you to sleep for the test but drinking the Colon Prep for the test sucks lol
otool
Hi Ecoenergy. It seems we live in the same town. I was on Pentasa, Imuran, Prednisolone (in both ends!) and a lot of Codeine Phos for a long time. I had my ileostomy, my 'bag for life' (at 43) in July '01, and not a moment too soon. I just didn't touch my meds again, my decision. Haven't felt it was a mistake. I can do anything really, swimming, cycling, heavy lifting. In fact if the country wasn't on it's knees life would be great. Anything I can help you with, just get in touch.
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