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

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checkerjane91
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 5/15/2008 6:50 PM (GMT -7)   
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
 
 

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/15/2008 7:05 PM (GMT -7)   
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?
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/15/2008 8:56 PM (GMT -7)   
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.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08


quincy
Elite Member


Date Joined May 2003
Total Posts : 30091
   Posted 5/16/2008 2:09 AM (GMT -7)   
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
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 5/16/2008 8:06 AM (GMT -7)   
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.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/16/2008 8:41 AM (GMT -7)   
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!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
30mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 5/17/2008 4:51 AM (GMT -7)   
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.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


broken colon
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/17/2008 1:01 PM (GMT -7)   
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.
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