Spoke to Gi depressed also decided I will never go sugery

I have spoken to a GI doctor today for the first time in years. The NHS has only ever had me speak to consultants so this is the first time i have spoken to a qulified GI. He did not give me any encourgement at all. All he said is that if you have a flare up you have to take prednisone. I told him i didnt like that option. and he repeated you will have to take prednisone. He didn't say anything about my new diet weather he agreed with it or not. He also asked me if i knew what Ulcerative colitis was, and of course i realed it off to him. I just dont know. I dont think i will get anything postive out of these guys. I have also decided never to go down the surgery route and to stay on my diet for the rest of my life. I just read j-pouch.org and found that this is not an option. It seems that you have your colon removed and then the illness just spreads any way. It seems that there is an illness that is called pouchtists which is the same as UC except in the pouch. Surgery then is not a cure for UC. There also seems to be a lot of people who were dignosed with UC and now have crohns, which just means the illness has spread into the small intestant. So what is the point of this sugery. I know that for some it has worked but there are so many it hasent. this is depressing. and i feel my day was really not productive at all.

Your GI does not sound helpful at all. He sounds a bit condescending. Are there other resources or specialists you can seek out. What medications have you tried? Prednisone should not be your only option... Suebear is right about the surgery, many if not most are probably happy with the choice. There are always options and choices available. Try to stay positive. I know it is easier said then done but hope is important.

We're thinking of moving back to London from Canada and while I love the city more than anyplace, it's stories like this that make me think twice. The NHS is so hit or miss, dealing with those drs. scares as much as the idea of surgery. I know of a child with UC in the UK who had to have surgery and ended up with a permanent illeostomy. While he's great with it, his family was never informed of the J-pouch option and believed it was not available in the UK. That is frightening. It's just so patchy and the care I've had ranges from excellent to shocking. I'm glad the diet's working for you and that you're happy being on it but others might not have the same response or the willingness to stay on such a diet for eternity. For them, I think surgery is a good option and I am thankful that such a "cure" exists for my kid if she ever should need it.

your right beeswax. ill try to stay positive. I feel that gerald and these natualists offer me hope. where the doctors can not. your also right prednisone should not be the first option. I dont know why he's a pred pusher. but no i dont have another option. I don't have money to go private. This is why i do like Gerald he has not charged me for so many things where. Paul Nison, David Klien and Russle Marnia seem very money orinatated.

     Wow..this news couldn't come at a worse time for me!  What do you mean surgery isn't a cure?  I thought it was!  Although the last time I went to my GI doctor, on Wednesday, and we talked about my decision for surgery, he did ask me if the surgeon told me that there is a chance the UC will come back in my small intestine.  He did not.  Then my GI doctor said it is very rare but it does happen.  Well, I will cross that bridge when I come to it.  My rectum has been the culprit for the entire time I have had UC, 11 1/2 yrs.  I heard about pouchitis but thought that only happens to those who have the j-pouch.  I am opting for the permanent ileo.  Sometimes I think GI doctors do NOT want you to have the surgery, just so they can keep pumping you with meds.  My GI doctor wants me OFF the prednisone and if that means having the surgery, so be it.  He said it is a much better option than being on prednisone the rest of my life and it doing even more damage to my system than it already has.

I've had pouchitis 3 times already, and, yes, it sucks, but it is not as bad as the UC. I don't bleed with the pouchitis. I just feel a lot of pressure

I do want to point out that those who had surgery, only to later be diagnosed with Crohn's, actually had Crohn's all along. They were misdiagnosed from the beginning. So yes, a colectomy still is very much a cure for those who have UC, and were correctly diagnosed. Surgery is not, nor will ever be, a cure for people with Crohn's, unfortunately. And you don't have to have a j-pouch if you have surgery...you can have a permanent ostomy instead, and then you never have to worry about pouchitis.

For about 6 years I have been fighting having knee replacement.  My surgeon told me I would KNOW when I would accept it and want it.  That is now!  I feel the same way with colon surgery.  One will know when it is necessary, when you no longer want to "live" with UC.  If you are not sure - don't do it.

ElaineNY

for those who find a diet that works, more power to you. we've been searching for something since diagnosis and have not found it and not for lack of research or money spent or time invested. sue, thanks for the tip. my daughter's a child so i'd have to find a pediatric hospital - i think maybe st. george's but i'll look into it.

If diet can control your UC - then do not get the surgery. That would be silly. If you have that kind of UC - why would you get surgery?

I tried all the diets - and even after surgery still need to eat gluten/wheat/yeast/food colouring/chemical, ect, ect free.

That is not the point.

Now I do not run to the bathroom 20 times a day and fill the toilet with blood. I dont have accidents. I feel healthier than I have in years. I have my life back. There are a few quirks - the colon does, after all, serve a purpose.

If you have tried every single diet, have flared for years and cannot get it under control - you are desperately anaemic - it has seriously affected your family life, your work life and your ability to enjoy your life - then chances are you will be pleased with the results.

removal of the colon is a cure for UC! If the colon is GONE there is no UC!!! Its as simple as that.
At times, people have some of the rectum left, which can get UC again, however that should not happen, the rectum shoudl be removed, even with Jpouch.
It does happen, occasionally, that a person finds out after surgery that they had crohns all along. But alot of those people still are med free and live wonderful lives!
I dont know alot about pouchitis, but i agree that most of thepeople on the jpouch site are there because they have problems and are lookign for help.
I stay here to help people who have questions. And to help calm fears, because there is sooo much misinformation.
And yes its great if your UC can be controled by diet or meds. But to me, i didnt want to give up things and take meds, which could fail at anytime, when i could have surgery and be healthy forever!
It didnt seem like giving up all the foods i had to was living a good life. And putting all thsoe dangerous drugs into my system for the next 40 years didnt sound good either.
But thats personal, its what you are willing to do and what you are willing to give up.

Obviously, your body is telling you something when you can't have gluten, wheat, or complex carbohydrates. Of course, diet isn't a cure for everyone but for some it has been a godsend.

Hellokitty.....can you not reconsider to take the 5ASA meds again...both oral and rectal?

You still aren't controlling your UC symptoms totally, and if you do have candida, that's a separate issue.

I'd be more fearful for you to have continued inflammation.

quincy