HealingWell
Search Close Search
☰

What Am I Doing Wrong!!!!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/9/2010 11:15 AM (GMT 0)
Hey Guys,

Any advice is greatly appreciated. I'm unable to shake this relapse that started at the beginning of August. Was hospitalised, put on 50mg prednisone and salofalk (Rowasa) enemas nightly. Was improving slowly, but once the Dr dropped the steroids to 40mg about 3 weeks ago, the bleeding has returned and am still having 3-5 BMs a day.

Am not eating any dairy or gluten, but having rice and rice bread daily as I seemed to tolerate this ok as well as a banana/blueberry/spring water smoothie at breakfast. Stopped fruit for a few days, but it made no difference, so where to from here?

I'm so tired and frustrated as I've had this condition for nearly 20 years and would eat anything I wanted even during a flare, and would be ok within weeks. Now that I'm trying to be vigilant with food, and supplements things are going from bad to worse! HELP!!!

Oh yeah, I also started taking Boswellia supplements 3 days ago.

Thanks!
Posted 10/9/2010 12:24 PM (GMT 0)
Hi Mari68, 

I found when I was on the salofalk enemas that it took forever to get things under control.  Have you tried using a steroid enema like hycort or cortenema.  I found that they were more effective for me.  I also add the oil from about 8 vitamin e capsules into the enema bottle it helps to stop the bleeding.

I can't comment on the Boswella because I never tried it, but a few weeks back I started taking the Jameson Cold XP pills to fight a cold that was starting. So it specifically said on the box not to use with any autoimmune disease but since I was feeling great on the inside I used it 6 pills a day well within two days I started bleeding.  I immediately stopped them and the bleeing is gone but it didn't take long to start irritating the insides.  Ingredients were echinecia and  North american ginseng all natural but not good for someone with colitis.

Posted 10/9/2010 12:33 PM (GMT 0)
My situation is very much like yours,have had U.C since 1985-was in hospital 28 days went from 190lbs to 140 lbs.Since 85 to 09 not anything except minor flares which rowasa would take care of.Had pnuemonia in oct 08-hospital 7 days-mega doses of antibiotics and i had the start of a bad flare-not fun.Well spring of this year after being on 6mp for 7 months the stool got back to normal[i was singing while pooping-my family thought i was nuts].Well around August my stool is the big D with blood sometimes,i twice had to stop 6mp because of low blood counts-maybe that was the cause of the runny stools.Well i had the 6 mp upped to 100 mg[i'm 205lbs] 2 weeks ago and i had normal stools this week.Now i know i can't start celebrating and start eating anything i want,i love to eat but i have to not overload my syatem.Before this flare i was 230lbs[i'm 6'5],thought i was in good shape,but i now i know that i need to stay where i am with my weight .I usually don't eat breakfast when i'm working,lunch is buttered bagel or turkey sandwich-dinner is nothing spicy-maybe some pasta-chicken-i usually eat anything but in small doses.Be patient-maybe you need to be on the pred a little longer-good luck.
Posted 10/9/2010 3:48 PM (GMT 0)
try stopping the fish oil and see if BM's reduce.
Don't blame yourself, you aren't doing anything "wrong", it's this darned disease.
Posted 10/9/2010 4:27 PM (GMT 0)
Poor thing. I know how frustrating it can be. I hate to say it but it seems like sometimes you're doing everything possible and nothing helps. Have you tried cortifoam enemas? I don't notice food being an issue for me, when my body is flaring, it's flaring, no food, no 5asa, no supplement, no vitamin, no probiotic, no diet is going to help. I know that's not what you want to hear but I am being honest. I think the only thing that has helped my flare is prednisone. I am still waiting to see results from 6mp... Are you on oral Asacol or 6mp? Maybe you tapered too quickly. My GI said it is best to wait to taper prednisone until you are completely symptom free. Have you tried using rectal meds morning & evening instead of just in the evening? I find that helpful.
Posted 10/9/2010 5:58 PM (GMT 0)
I feel I can maintain remission thru diet and supplements but I have to agree with NSSG that it is very hard to escape a full blown flare after it has begun.

For me it was blind stupid luck. My flare generated a perianal abscess and I was prescribed antibiotics for it. Antibiotics & probiotics worked to end the flare.

Flares do end. Perhaps you could add some soluble fiber like Metamucil to help solidify your stools.
Posted 10/9/2010 6:07 PM (GMT 0)
Have you been tested for infection? Also, have you tried stopping the enemas? I developed an intolerance to Mesalamine after using it for a year and a half. ;o(
Posted 10/9/2010 6:19 PM (GMT 0)
I second the good suggestions here..... In most things in life, we look for cause / effect (I was bad, so I'm being punished) But in the case of UC....like Journey, I truly believe we can do everything "right" and the disease can change the rules on us!

When I'm really flaring, the steroid enemas are the only thing that heals me. And as you probably know :-) I find Metamucil greatly adds to my comfort level, makes the poops easier to pass... but if you haven't used it before, please start slowly.
Posted 10/9/2010 7:20 PM (GMT 0)
I was about to suggest the Exact same thing regarding Metamucil. I followed songlady's suggestion with the psyllium and it has helped Immensely. Daughters BM's are 1-3 as opposed to over 5 per day. Alot less urgency and less straining. Her poops almost look normal. A couple of times they've looked like a completely healthy persons Poop ! Not kidding.

But start slow and drink plenty of water. We started with 1/2 teaspoon and now are up to 1 tspn a day.
Posted 10/9/2010 8:21 PM (GMT 0)
I agree with some of the other suggestions, you should get checked for infections or try a course of antibiotics. It is possible that you're battling c. diff or something bacterial on top of your colitis that is making things harder to treat. I tried Flagyl a few weeks ago and it seemed to help while I was on it. I don't think it was enough to get me into remission but it helped, I almost wanted to take it longer to see if I got a better response. See if you can get stool tests done. Have you had a colonoscopy lately? Do you know where the inflammation is most active? That can help in knowing the best methods of treatment. If it's in the rectum, you should definitely ask about cortfoam enemas.
Posted 10/9/2010 10:41 PM (GMT 0)
You aren't doing anything wrong. When I was in such a crisis, I tried different things. Fecal transplantation is what got me out of it. I believe the fecal flora in my colon was imbalanced. Meds such as pred aren't going to balance the fecal flora so they aren't going to stop the inflammation.

Hope you find what works for you!
Posted 10/10/2010 10:03 AM (GMT 0)
You guys are the BEST! Thanks so much for the encouragement and advice. This disease can really get you down, especially since i never let it control my life, but now, It seems to have a life of its own!
Am seeing my GI on Thursday. Am sure he'll try to push for Imuran. Although I had hoped to be one of the "lucky" ones and be able go into remission and stay in remission by diet and supplements, looks like more drugs will be on the agenda. I guess we should be grateful that we have a choice to some extent.
Staying strong wink
✚ New Topic ✚ Reply