Posted 10/3/2007 1:03 PM (GMT -7)
I will definitely keep everyone posted- I have just had it with UC, meds, & all the associated health problems that go along with them. I'm ready to feel well & heal myself, ya know? They seem to think it's become pancolitis at this point. Good luck to you, Keith- a GI I saw talked about cyclosporine to me also, as a "rescue" drug to put people into remission. I think they generally use it to get you well enough to go thru surgery. You keep posting also- I'll be curious to hear how it works out for you. Smiles, people!

diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day

Posted 10/3/2007 1:36 PM (GMT -7)
Eva,

I have Pancolitis too... I took Cyclosporine 2 years ago and along with 6-mp it put me into remission. The only reason that I flared was that I stopped taking 6-mp; I wanted to know how I would feel without the 6-mp incase I had surgery.

The first time Cyclosporine calmed my system down within 4 days.... I'm pretty sure that it will work for me again the same time line.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  6-mp & Colocort
Supplements:  None 
 

Posted 10/3/2007 1:40 PM (GMT -7)
Have you visited the site www.jpouch.org ?

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  6-mp & Colocort
Supplements:  None 
 

Posted 10/3/2007 1:52 PM (GMT -7)

Congratulations and good luck!!

I had my surgery in June 07.  I would do it again in a second.  I also chose the permanent ileostomy instead of the J-Pouch and I am totally content with my decision.  Your going to be so happy to get your life back and nooooo meds.

Keep us posted.

April


Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero)
6MP 125 mg po qd
Pentasa 500 mg 3 po tid
Calcium 400 mg with D tid
Iron po tid
Vit C po tid
Tylenol #3 prn
Multivitamin
Remicade - Quit working
Asacol
Colozal
Abatacept Study
Asacol
 
 
 

Posted 10/3/2007 2:57 PM (GMT -7)

Keith- I have visited jpouch.org. I plan to go there now, actually! At first I thought I wanted a jpouch, but after really researching it & thinking it over, I think the perm ileostomy is best for me. I'm the sort of person where if something can go wrong, it'll go wrong, & the 40% of people who get pouchitis... that's too high! The surgeon described it to me as people with a pouch & pouchitis telling him "My UC came back!". I would die. Plus the thought of at least 2 surgeries scares me off. The high # of bm's a day, the "butt burn", all that just throws me. I know an ileosotmy is going to be no picnic, but it's a fairly straightforward, simple surgery, & a simple system, know what I mean? The surgeon also told me that there is really no test to differentiate between U"C & Crohns until the colon is out & they can do a pathology report, & the y prefer not to do jpouches in Crohns patients as the inflammation just returns. There are just too many "what if's?" for me... althouhg I do know of many people who absolutely love their jpouch!

Blue- thanks! I am excited to be moving ahead- it's nice to hear from people who love living life & are content with their ileo. Was it tough to adjust, mentally? I know it'll be REALLY weird initially, but I am in a good mental place for this. I feel good about it, so...


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day

Posted 10/3/2007 3:00 PM (GMT -7)
Good luck with your surgery. You're going to have to come back when you are able after the surgery to let us know how it went.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 

Posted 10/3/2007 3:05 PM (GMT -7)
Good luck.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.

Posted 10/3/2007 3:15 PM (GMT -7)
Eva,

There is a difference between pouchitis and chronic pouchitis.... I think that chronic pouchitis is very rare and the occasional pouchitis is very easy to treat.

I am the exact opposite of you, if I had to have a permanent bag I would not be happy.

Good luck with your surgery.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  6-mp & Colocort
Supplements:  None 
 

Posted 10/3/2007 4:05 PM (GMT -7)
you too, Keith- I hope the cyclosporine gets you well ASAP. I have a feeling we'll both be happy with our surgical choices- hey, anything's better than this right? :-)
diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day

Posted 10/4/2007 7:40 AM (GMT -7)

Hi again,

To answer your question about mentally adjusting.  I just turned 40 and I've been married for 20 years.  I had been so sick for so long that I really didn't give it much thought at first to the mental aspect, I was just so happy to be well.  I will tell you that I have not once regretted it.  I have never had a day where I think "why me".  My husband tells me all the time or if someone asks him about it that everyone poops, mine just goes in a bag first.  Its no big deal.  And its not really like poo.  Its really just liquid or paste consistancy.  It takes me about the same amount of time to empty the bag as it does to urinate, so its quick.  There have been a few days (PMS days) when I just get irritated about everything in general, so of course the bag is one of those things.  But it has never interfered with anything I want to do.  I wear my same clothes, do the same things I did before I got sick.  Swim, amusement parks, walks, etc.  I don't know about everyone but I can feel when I need to empty the bag without actually going to the restroom to look. 

I really think  you will be pleased with the outcome.  I suppose if I were 20 and was a swimsuit model then I would have had a harder time dealing with it, but I'm just a regular 40 year old woman.  Hope that helps you.
 
Blue85
Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero)
6MP 125 mg po qd
Pentasa 500 mg 3 po tid
Calcium 400 mg with D tid
Iron po tid
Vit C po tid
Tylenol #3 prn
Multivitamin
Remicade - Quit working
Asacol
Colozal
Abatacept Study
Asacol
 
 
 

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