Bummer to be here

[snowman]

Hi everyone.
I didn't think I would ever be on this forum. When I was diagnosed with UC in 1986, the internet was not like it is today.

Here is my story. Diagnosed in 1986 at the ripe old age of 16. That was very traumatic for me way back then. I got along ok with it. I was on sulfasalazine and prednisone for many years. Finally the prednizone was not doing a good enough job. I eventually did the nightly enemas and then finally used 6MP. The 6MP did the trick. I was on that for a couple of years. I eventually weaned myself off of that and the sulfasalazine around 1996. All signs of UC were gone. Not a lick of problem. Fast forward to July 2010. Bam, full on onset of UC and it was back with a vengence. I had moved so I did not have my original GI Dr. By the time I went and got a referral from my regular Dr, went to see the GI Dr and scheduled the colonoscopy, my life was miserable. The GI Dr said it was definitely back.
Initial meds were 40 MG of prednisonze and Asacol. I could not get lower than 20 MG of pred so he moved me to azathioprene with weekly blood work. Last week I got a call from him saying to stop taking azathioprene immediately, it was damaging my liver. Heck!
I had been reading about aloe and I figured what the heck, it wont hurt anything. I dont like the taste at all but if it will help, I can choke it down.
I am still not sure if Asacol and aloe alone will do the trick. I need some more time to see how I respond.
I go back in wednesday for another blood test to see if the liver has healed or not.

I just wanted to say it is nice to read everyones story. I have not met anyone in person that really understands what the heck Chrons or UC is and how it can effect a person.

 

[Astra]

Hi snowman
and welcome

so sorry you're going thro all this again.
My friend has UC and has recently greatly improved following a mediterranean diet based on the specific carbohydrate diet (SCD), from the book 'Breaking the Vicious Cycle' by Elaine Gottschall.
I've never tried it, so I can't comment on it, but others on here have. Maybe this could be your starting point?
We understand, us Crohnies! so welcome, and lots of support here for you!
lotsa luv
Joan xxx

 

[Rebecca85]

If the asacol and aloe aren't strong enough, could you go back on 6mp, since you tolerated it OK before? And welcome to the forum!

 

[My Butt Hurts]

Hi Snowman!
I'm sorry that you have to be here, but glad that you found us.
I read somewhere that aloe can be damaging for Crohn's because it can cause bleeding, but I don't know if it is the same for UC.

Did I read that right? You were off all meds for 14 years? Did you do anything else during that time to stay in remission? Maybe pentasa would help you now? I started on sulfasalazine and did very well for quite some time, I took pentasa (which is similar I believe) after that. I also wonder if any of the biologics would help you now that you can't get off of pred.

Welcome to the forum!

MBH

 

[Entchen]

Hi, Snowman, and welcome to the forum! Sorry your disease has gone downhill after such a long time of being well. I hope that you get things turned around quickly!

 

[DustyKat]

Hi Snowman and :welcome:

Sorry to hear that everything has come back with a vengeance. Good luck with your bloods tests and I hope you can find some long standing relief soon! Please keep us posted on how you are travelling..........welcome aboard!

Take care,
Dusty

 

[Dexky]

Hi Snowman!! My son has liver issues as well. He is on 6mp despite the liver warnings and so far so good. His liver enzymes have remained in the normal range. We were told it can take up to six months for the liver to heal.

I'm with Rebecca here!! I'd ask the GI about getting back on 6mp and see what he says!!

Best of luck and welcome aboard!!

 

[snowman]

The 6MP did do a good job before. One reason I dont want back on the 6MP is that my wife and I are trying to have a little one and the 6MP might get in the way of that.

Interesting to hear that the liver could take 6 months to heal. I am going in for another blood test tonight and will get the results tomorrow.

My butt hurts, I did absolutely nothing for maintenance when I was in remission. I thought it had just magically gone away. I did not know it could go into remission for so long. I wasn't going to question it. In fact, I was kind of shocked when it did come back. I had an issue with a rare type of cancer called musinus diverticulitis (I know I slaughtered that spelling). It had stomach pains also. So when my UC started acting up, I was in fact hoping that it was UC and not the cancer.