HealingWell
Search Close Search
☰

Do you ever get the feeling it doesn't matter what you do? And, still looking for a GI in OK or TX

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/16/2008 1:50 AM (GMT 0)
Hi All,

Sometimes I feel like it doesn't matter what I do - eat right, exercise, take my meds, take supplements - it just doesn't matter and effect my colon (in a positive way) at all!

I take probiotics, fish oil, eat great 90% of the time, exercise daily, and take my meds faithfully, and I am still going downhill!!  I mean, come on, I just have PROCTITIS!!!! 

I have had a very hard time finding anything that gives me more than two months of remission, this has been going on for six years.  I am really tired of it.  I am emotionally and financially spent.

I can't take the steriods.  The didn't help, and within in a week I had every side effect you could possibly have.  I don't want to take the immune drugs - the idea of them kind of scares me.  But, I am getting so emotionally exhausted from dealing with this that I am ready to give them a go.

It would probably help if I could find a decent GI, but that hasnt' happened yet.  Anyone in Oklahoma or even Texas????

I know that I am lucky compared to a lot of you - it doesn't impact my daily life as far as activities, etc.  For that, I am very fortunate.

Anyway, thanks for listening.

BethAnn

 

Posted 5/16/2008 2:05 AM (GMT 0)
BethAnn, if you're willing to go as far as Dallas, I'm sure there must be some good GI's there. Have you checked the CCFA website?
Posted 5/16/2008 3:56 AM (GMT 0)
I know how you feel. I too, only have Proctitis (ONE ulcer, grrr) and nothing works and I get very ill often. I am sorry you're having a rough time.
Posted 5/16/2008 9:09 AM (GMT 0)
Ulcerative proctitis can be the most difficult to treat for some patients.

When was your last colonoscopy?

What exactly are your symptoms?

Have you at least tried the rectal meds? If so, which ones?

quincy
Posted 5/16/2008 3:06 PM (GMT 0)
I have proctitis and was told by my GI that rectal meds are the primary meds for proctitis, he wasn't even going to waste my money on orals at this point because the medicine wasn't going to make it far enough in my colon to help.

The Salofalk sup worked within 24 hours for me, but everybody is different.

I also eat right, low fat, exercise, get plenty of sleep, but this disease is not picky, it can attack anbody.
Posted 5/16/2008 3:41 PM (GMT 0)
The immunosupressants scared me at first too. Then I did a lot of research and reading (on this board) and found that they're not as scary as I was making them. Yes, there can be side effects, BUT things are monitored very closely to catch anything early.

I also recommend the CCFA site for locating a doctor.

Good luck!
Posted 5/17/2008 11:51 AM (GMT 0)
I do indeed get that feeling! You guys ever hear of the old Irish saying "The road to Hell is paved with good intentions"? That about sums it up... I mean, you can do everything "right", take all the "right" meds, get enough sleep/exercise/whatever, follow a strict diet of your choice that's supposed to help IBD, take all the right supplements, do any & everything. And sometimes, it's just refractory & out comes the colon! Or you opt to spend your life half in the bathroom, half out. Truly, I think we are all kidding ourselves if we think what we choose to do/not do or take/not take has much of an effect our disease. It's a crap shoot, no pun intended. And I'm not in your part of the country, unfortunately. Good luck finding a doctor though! Just had to chime in.

Posted 5/17/2008 8:01 PM (GMT 0)
I understand what you mean...sometimes it feels like nothing you are doing helps. I was in the same boat with the immune drugs, but started taking them and have achieved remission a couple of times now for several months at a time. Before that it was in and out of the hospital over and over again. My family rode me pretty hard about getting multiple opinions because I was not getting results as fast as they thought I should. They were just looking out for my well being. Everywhere that I had looked told me that my doc was doing the right thing for me. I finally had the second opinion and got the same answer telling me that he was doing right by me. I think that my doc does a great job and takes the time to really know me so that he is doing the best by me. I have called after hours for some very scary situations and either him or one of his team has contacted me back very quickly and given me the help that i needed. He is in Norman OK and works at the GI Clinic of Norman. His name is Chintian Parikh. I hope that this helps and I wish you good health!

BTW with the immune drugs he did some blood tests, started me off on a very low dose, and monitored me taking every precaution to ensure that we were looking after my health. Still don't like the idea of taking the drugs, but they have helped me reach remission.
✚ New Topic ✚ Reply