Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group just another update *DELETED*

Post deleted by JamesB

hi james,

just two quick thoughts:

1. my stomach took about a year before i didn't have to eat every hour on the hour, and three years before it was "back to normal" so long as i took my prilosec, stayed away from certain things, and didn't get too hungry. don't know if stomachs just take a long time to heal because they are constantly being "bathed in acid" or if its just me.

2. the idea of taking less drug: i know for me, i almost always have to take less drug than what is recommended and usually the lower amount of drug works very well for me, so its an idea. some doctors will initially insist i take a higher dose or it won't work, but then they are surprised that i was correct. i think worth a shot; if the lower dose doesn't work, no worse than not taking it, and it can always be increased.

sue

Hi James,

I am glad to read that your stomach troubles have eased off a little bit and that you were able to get in to see your gastro doctor sooner, rather than having to wait until next week.

It's a relief to me that this doctor was happy to see you and now seems very willing to provide you with the specialist care that you deserve. I hope the scopes provide some insight that will help you and your doc figure out the best approach on how to heal your stomach and treat the UC.

Remicade is usually prescribed for AS at a dose of 5 mg (per kg of body weight) but I take a lower dose of only 3 mg per kg and this has worked very well for me. I like the fact there is less risk exposure with a lower dose too, and I'm comfortable knowing that I can always increase my dose if I need to.

It has a demonstrated ability to treat both AS and UC that may benefit you and not be as apt to bother your stomach as mtx might. Both meds are immuno-suppressants but remi quiets one part of the immune system (TNFa), not the whole immune system like mtx does... as far as I understand. I do not know if it's contraindicated with your heart meds or rhythm troubles but these are very good questions to run past your doctors.

Whatever you learn and decide James, I truly hope you'll soon be on a path that you are personally comfortable with and that will help to improve your health and well-being.

Best wishes for getting past these tests!
mig

Hey James, I saw your post when I came in 2am this morning. Sorry I was too tired to post - figured I'd reply when I woke up. Any wrong information I'm sorry - I have the worst memory and you got rid of my cheat sheet . Hope your biopsy goes well. I've been watching "house" the tv show and hope it's not too painful for you. I hope your stomach pain (ulcer?)will start to heal rapidly. My dad had issues years ago and had trouble eating anything. It must be misery for you. I'm sorry that you are going thru that. I think the meds have a lot to do with the stomach issues. These strong pills just sit there and sometimes do harm. Is there a way to take the medication without going thru the stomach to give it time to heal? or another alternative without that med?

Don't feel disheartened and please don't feel you need to delete. As I recall it was a pretty new post when I first saw it. That's why I figured I'd reply when I got up. I work nights so usually look at the posts during the midday. Everyone is on a different schedule even in a different country with different timezones. I feel bad that you felt you needed to delete. It was an important post.

I wish I could help and I wish you didn't have to go thru this and I wish you wellness...Sue!

Didn't read the post but want to send you hugs and blessings James. I will be thinking of you.

Possi

MAY ALL OF YOUR BLUES BE BEAUTIFUL BIRDS.

Oh! You deleted! I'm sorry. I know your stomach troubles have got to be fairly stressful - they were for me when I was in the grip of them. The biopsies they do with scopes are painless (apparently, despite all the pain our guts cause us, THEY don't feel anything ). You will do just fine. Have you had the scopes before? The worst part, by far, is the prep. It's a new kind of torture. Hang in there! I hope they find answers for you. They didn't really find anything for me except unexplained gastritis. And benign polyps, and GERD up the wazoo. But I've been treating it for years, so...who can say?

Take care,
Moll

Hi James, I just wanted to say I hope you're tummy's feeling better soon. Nothing worse (well, some things, but you know what I mean) than GI problems.

Sending white light and love your way.

Hugs,

Hi everyone,
Sorry about trying to sneak off with my original post. I'm having trouble with depression right now, and when I came back to re-read what I said, I didn't like what I posted so I tried to delete it before too many people got to see it.

So if you missed it, it was basically a repeat of me saying I'm still having some stomach trouble, despite being on 3 stomach meds.

I also said that I got to see my old gastro doc and he has set up appointments for me to get an upper and lower scopy with a biopsy on September 30th. He didn't want to work with me before, but now he is happy to work with me on this.

I also mentioned that he is asking me to consider going back on remicade because he saw on my records that I was doing well on it with ulcerative colitis and AS. The truth is though, I'm scared of biologics, because I got pretty messed up towards the end. I may consider a low dose of Remicade but I have to take time to think about it, and it will have to be after i get the tumor(s) removed. I'm thinking that a Dmard might be better choice for me, but it would have to wait until my stomach problems clear up for a while.

My gastrodoc's opinion so far is, that I have a possible Peptic Ulcer and my Ulcerative Colitis has probably spread throughout my entire colon. He also briefly talked about the other possibility of finding colon cancer. At this point it's not likely, but it is still possible.

While it may seem like good news that I am finally getting looked at, the rest of the 'update' was depressing me more than I already have been. I'll get those scopies done, because I need to know what's wrong with me, but after that I don't know what I am going to be able to do about whatever they find. I was up all night just staring at the wall.

Take care,
James.

Hi Kat,
Thanks. The stomach pains aren't the worst pains I've felt, but it's up there in the top 5.
thanks for your reply,
take care,
James.

Hi Molly,
I had a lower scopy done about 8 years ago I think. I was out cold, so I didn't feel a thing. I don't think they did a biopsy then, because it's not seen on my records. Thanks for letting me know the biopsy will be painless. Yeah, I remember the preps like it was yesterday, something I'll never forget.
Take care,
James