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TOPIC TITLE: surgery for colitis is a good option
Created On 8/13/06 10:58 PM
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chip
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8/13/06 10:58 PM
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Hi. I had colitis for about 6 years and have been on a lot of medications, and very high doses of meds too. I took prednisone, asacol, 6mp, rowasa, canasa..and the list goes on. Despite all the meds, I've had may sick times, hospitalizations and suffered a lot. Exactly a year ago this week I decided I'd had enough and opted for surgical removal of the colon. It was a two step surgery and now a year later, I am a new person. I dont take any meds. I havent been sick ( even a cold) all year b''h (before surgery I used to get sick all the time- my immune system was down.) I eat everything I want. And I DONT live in the bathroom like I used to. It really changed my life . This week I will be making a seudat hodaah to mark the occassion. If anyone is suffering very badly from colitis please consider surgery. The only thing I'm sorry about is that i didnt do the surgery sooner and i was sick for so long- and i now have side effects from all the meds i took over the yrs- Osteoporosis from prednisone (and Im only 28- so its still correctable thank g-d). Kidney stones from 6mp. I have two friends who did the surgery before me and they were the ones to push me to do it. they are also healthy and happy people now.
 
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Edith
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8/14/06 12:26 PM
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I was very happy to see your post.
I have ulcerative colitis - after a flare-up in Nov. i have been on prednisone since january, and have been unable to get off of it. My Dr. is now pressuring me to make a decision - either Remicade or surgery. I have been leaning towards surgery because Remicade scares me with it's side effects.
I am nervous to do the surgery becasue it is so final. Did you get re-hooked up inside? or do you have a bag now?
 
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chip
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8/14/06 2:32 PM
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Hi. i'd be happy to talk to you privately but I dont want to put my number up on the board. is there any other way to do it? as far as the surgery- i had a bag for 11 weeks and then got rehooked. i chose to have a bag and do a 2 step surgery- becauses then the surgery is less risky. you can also do it in 1 step without a bag but more risk involved. The bag was pretty gross but I managed to survive with it. one of my big worries was that you'd be able to tell i had something under my clothes but that was not an issue at all. you could not tell at all. i wore the bag to my brothers wedding under a very fitted gown, and i also traveled overseas for succos with the bag. you can definitely go on with life in it. as far as the finality of surgery- of course its never a good thing to remove a part of your body, but when its diseased and always causing problems- sometimes thats the best solution. my colon wasnt serving its purpose for me and wasnt working correctly, was a higher risk for colon cancer so it made sense to remove it.
 
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Admin
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8/14/06 10:09 PM
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Hi,

You can use the PM (Private Messaging) feature to hold a private conversation. Click on the lock icon on the right side of a posting by the member you wish to private message with and that will let you start a private conversation.

All the best,
Admin
 
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stern3
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8/15/06 3:40 PM
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Hi! I have Colitis too. I have it probably for 18 months now but i was diagnosed about a year ago. My colon flares up terribly from Asacol or Asulfadine and the prednisone i was on for a few months didn't do the job 100%. My doctor says surgery should alway be last on the list. so i did the Remicade. the side effects only happen if you take too much of it. i had two doses and i was 100% in remission! i'm on 6mp as a maintenance. I hope it stays like this. but to have too much of Remicade it causes side effects as far as i understand it. Kidney stones, again as far as i understand, only happen to a very small percentage of people that take it. and an allergic reaction also could happen to some ppl. after the first dose. (swelling and rash). There is something else that i was given as an option before surgery. its called cyclosporine. I hope i helped in some way.
Good Luck!
 
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chip
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8/18/06 11:54 AM
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cyclosporin is a really really heavy drug-antibiotic, i think. 6mp is also pretty strong stuff. they use it in patients who have liver and heart transplants. and by the way of course all doctors tell you surgery is the last last resort, if everyone had surgery theyd have no patients. i havent been to a gastro even once since i did surgery- before i was going constantly- every few weeks. a doctors job is to treat the disease and keep it under control . the surgeon just removes the whole problem. i am not aganst doctors or medication. they saved my life. if it was 100 yrs ago and this care wasnt available, i would have been gone a long time ago. but the drugs are poison for your body too(they do so much good- but a lot of damage too). so, if the drugs arent helping and you can never get off of them- then surgery is a good thing. and dont forget that after 10 yrs of active colitis your chance of colon cancer is much higher then normal (my cousin who was 29 yrs. old passed away from it- he had colitis very bad- was told to remove his colon, and didnt. by the time he found the cancer it was too late).speak to your doc about that too.
 
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attitude
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8/24/06 7:45 PM
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I've heard about the SCD diet curing all symptoms and healing the colon at all stages. I’ve seen miracles with my own eyes. A lot of people keeping the diet are frum and managed to avoid surgery and medication. Search google for “kosher scd diet” http://www.google.com/search?sourceid=navclient&ie=UTF-8&rls=GGLJ,GGLJ:2006-22,GGLJ:en&q=kosher+scd+diet . B’hatzlacha !
 
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Edith
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8/28/06 3:09 PM
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I've tried the Specific Carbohydrate Diet but did not feel any significant difference from it.
Right now surgery seems like the best option - how much poison can a person put into his body?!?
I just seems like such a drastic step!
 
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Edith
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8/30/06 2:24 PM
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This message is for Chip.
I can see from you previous post that you are female. - not trying to be nosy - but are you married - if so, did your surgeon/ dr. discuss any pregnancy options or complications that can result from the surgery?
 
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Edith
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7/22/08 2:50 PM
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Hi, to anyone suffering with Colitis, i feel it necessary to tell you this.

I had colitis for about 2 1/2 years - not such a long time, however, towards the end, it got very bad, very out of hand, and was not responding to any medications.
i tried alot of medications: asacol, imuran, remicade, prednisone. I tried chinese herbal medicine, I tried the SCD diet, and AloeElite pills with a diet. Nothing was able to help besides high doses of prednisone, which is not healthy for the body. i suffered from terrible side effects of the prednisone - weight gain, mood swings, hair growth, and lack of immune system, which caused me alot of other health problems that normally would have been fought by the immune system.

finally, last year, i was hospitalized, and had no choice, but to do surgery and remove my colon. to be honest, it was very scary decision, but b'H, i'm so glad i did. it was not such an easy recovery, but now, a year later, i can honestly say B"H i am feeling so much better.

i never thought i would feel better when i was sick. i was constantly weak, tired. because of the colitis flare-up, i was scared to leave my house for fear that i woul dneed the bathroom. my stomach was always bothering me, i could not take care of my child, my husband, or run my house normally.

B"H things are back to normal. i feel great and i have finally weaned completely off prednisone (it took this long because my body was so used to it, and became dependant on it, i would go into withdrawal)

if anyone needs support or information about surgery, i would be glad to help you out.
 
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FORUMS > Gastroenterology > Crohn's Disease / Ulcerative Colitis < Refresh >

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