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I feel like a UC freak

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Posted 5/6/2008 4:46 PM (GMT 0)
I read your posts and I feel like such an oddity.  I am having another rough day and I wanted to share what I go through, it seems like I am so weird compared to everyone else.... 

1. Rectal meds seem to make me worse

2. Probiotics make me worse

3. Entocort made me worse

4. Canasa made me worse

5. Flagyl helps me- ANYONE ELSE??

6. Certain foods definitely make me worse

7. I lose a lot of blood almost every day

8. I have a lot of nausea when having bms

 

Posted 5/6/2008 4:53 PM (GMT 0)
It seems strange that Entocort makes you worse but prednisone helps. I wonder what would cause that? Sometimes I think we should all have medical degrees just to fully understand what is happening to our bodies.
Posted 5/6/2008 5:04 PM (GMT 0)
Thanks for responding, hana. I was feeling really down, I had a nice cry and I am feeling better, sorta. Last time I took Prednisone, it didn't work that great at 40mgs but I was mainly taking it for joint pain. I try to stay away from it. I tried Culturelle last week and after the second day, I had more bleeding than I have had in a long time.
Posted 5/6/2008 6:11 PM (GMT 0)
Sorry that you are feeling bad.

I have failed most meds, and often feel like a medical freak. My disease is very aggressive, and I have never reached any kind of remission in the nearly 2 yrs since I was diagnosed. I cannot tolerate enemas, the Rowasa and Canasa made my symptoms worse. Entocort didn't work for me, but Prednisone does. I had to go through several probiotics to find one that seems to be helpful -- VSL #3 and Florastor didn't do anything, but Primadophilus Reuteri seems to be okay. (Although it is so hard to tell what works and what doesn't sometimes, LOL).

Fingers crossed, weekly Humira finally seems to be getting me better -- of course now I have to fight insurance to cover it. And I need to get off this Prednisone before I completely lose my marbles. I'm down to 20 mg, but have a long slow taper ahead.
Posted 5/6/2008 7:50 PM (GMT 0)
I've been having trouble with the mental side of UC as well lately. I'm trying to stay positive but I feel like my life is completely turned upside down.

You have probably already thought about this as you have been dealing with this longer than me but is it possible you have infectious colitis or parasites? I think the biopsy's come back the same as UC as for infectious colitis. It seems strange that typical treatments are not working but Flagyl helps.

I had a few more symptoms when I started Culturelle but the went away in a few days. I honestly can't tell if it does anything for me. I tried activa which tastes really yummy but it upset my stomach so much I cant have it.
Posted 5/6/2008 7:52 PM (GMT 0)
probiotics makes me worse, I can only take canasa if I cut some off the suppository, a lot of foods makes me worse, nausea most the time when flarring. flagil makes me sicker.
Posted 5/6/2008 7:57 PM (GMT 0)
princesscolon....it seems maybe there's something else going on as well? Is your UC thorughout your entire colon?

There's always someone who doesn't respond to meds or supplements, and if pred is your only med, I would think that options regarding that should be discussed with the doc.

Have you had your thyroid checked our follicle stimulating hormones, etc to see if any hormones are out of whack? Many women find their symptoms are definitely stimulated by hormones.

You have so much going on at the same time....your coping skills are definitely taking a beating.
Never underestimate the power of a good cry. It helps!

Have you totally gone through food sensitivity testing, etc?

Have you tried any inulin based stool bulkers? it's a prebiotic, but it produces butyrate which is supposed to help heal the lining of the colon...there were others talking about butyrate a long while ago...just wondering if fibre supplements might be helpful. The reason is that if you're taking probiotics but no prebiotics..they won't be helpful to you because there's nothing for them to feed on.

Just throwing out ideas....

Since you've been on humira...have you shown any improvement?

Hang tough.....
quincy xx
Posted 5/6/2008 10:09 PM (GMT 0)

princesscolon said...
I tried Culturelle last week and after the second day, I had more bleeding than I have had in a long time.

There are some schools of thought that probiotic supplementation can be counterproductive while active bleeding is still present. In that case, you'd want to try some other things to promote gut healing - l-glutamine, aloe, etc. - then try probiotic supplementation again, cautiously, when you're more healed. In Listen to Your Gut, Natren's powdered Bifido Factor is recommended as one of the more gentle and effective brands to try first. Even then, you'd want to start slowly and work your way up to a normal dose.
Posted 5/6/2008 10:13 PM (GMT 0)
Sounds like a good plan....although interestingly, the SCD mentions bifidus as a huge NO-NO..go figure.

I'm wondering if the activity of the probiotics, doing their multiplying (or whatever all they do) and stuff, can be perceived by the gut as an invader?

quincy
Posted 5/6/2008 10:39 PM (GMT 0)
Just wanted to say (I think) I know what you're going through. I also feel "odd" b/c my IBD issues cause me a lot of chronic pain and a lot of people on the UC site don't seem to share this concern--CP is what I need the most support with so I stick to the CP forum a lot of the time. Chronic illness sucks.
Posted 5/6/2008 11:33 PM (GMT 0)
Wanted to throw some support your way! I know how the bad days can get you really down. The power of a good cry is great - releases all of those extra emotions and has a way of helping to put things in perspective...

Nausea with bms isn't so odd. Especially when flaring. Sometimes it feels like something is reaching through my guts trying to strangle me at the same time that something else is trying to pull my guts out. No wonder we can feel so tired!

Thinking of you!
Posted 5/7/2008 3:26 AM (GMT 0)
Thank you all. I feel better now and I really appreciate your comments. For hana, I will ask for a stool test at my next visit, I haven't had one in years and have been having more violent D lately and I have wondered about C Diff. For quincy, I have never tried Prebiotics. I recently had more horomones checked because I have been having dizziness and my GI said I should get my horomones checked for that, they came out fine. I took a very detailed food allergy test 2 years ago. My highest allergies were to oats, apples, zucchini, yogurt, msg, blue coloring, and then some. Biglucy, at times I have severe pain in the rectum or horrendus colon cramps, they are extremely painful. Dakota, I like your description, I've definitely had that sensation. I am glad I could come here and blow off some steam without anybody judging me.

As far as the Humira, I was happy when I first started it that I was doing so well, but I was also on Flagyl too. Ever since I finished my Flagyl, it's been a downhill battle.
Posted 5/7/2008 4:09 AM (GMT 0)
Canasa made me worse, even though I was okay with Asacol. You may be allergic to the inactive ingredients in the drugs that make you worse. That's not unusual as well as your other symptoms. Just keep trying different things that make you feel better. Listen to your body, it knows what works.
Posted 5/7/2008 4:18 AM (GMT 0)

GISGuy31 said...
Canasa made me worse, even though I was okay with Asacol. You may be allergic to the inactive ingredients in the drugs that make you worse. That's not unusual as well as your other symptoms. Just keep trying different things that make you feel better. Listen to your body, it knows what works.

This reminded me that I forgot to respond to Pibbin...  Sorry you have had such a rough time as well.  Canasa was really one of the worst things I ever tried, I wonder what it is about it?!?  I really want to try accupuncture.  I have a good feeling about it.  
Posted 5/7/2008 12:43 PM (GMT 0)
I have a hard time with Canasa, Rowasa and Asacol. I don't think I can tolerate the mesalamines. I have slight issues with Colazal but not like the Asacol. Some people just can't take some meds and you should not feel like you're the odd ball. Everyone's Uc manifests itself in different ways and there is no standard set of rules that it goes by. As for the nausea, I get that too if I'm flaring badly. Just the pain of it makes me want to pass out and/or vomit. So you're not alone there! :)

We all need our pity party days and talk to the people that can understand.
Posted 5/7/2008 6:06 PM (GMT 0)

princess, I was the queen of bad days for a long time, as my prednisone was tearing me up physically and mentally.  It was almost as bad as my UC.  When my hair was falling out I prayed for help, and not long after I found the Haldi drinks that work with inflammation, and have had relief ever since (they did stop my flare).  I have a friend with IBS that has had similar results.  But as you already know, something that works for some people does not mean it will work for everyone.  I truly hope you feel better soon.   Good luck with the accupuncture. 

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily tongue

Posted 5/7/2008 6:15 PM (GMT 0)
The probiotic in the store are in dairy product, my son started the VSL#3 only one day looks promising but will keep you posted.
Advantage digestive for colitis, for the 2nd day works good. I also got him iron, for energy, all that blood loss...
Don't give up, this ia a wonderful family of support !!
Posted 5/7/2008 10:37 PM (GMT 0)
1. I've only ever tried Canasa suppositories in the way of rectal meds and it made me worse with lots of bloating, cramping, and diarrhea
2. Probiotics didn't seem to make any difference
3. Entocort definitely made me worse
4. Not sure if I've taken Flagyl
5. Certain foods definitely make me worse (yet I eat them anyway... I know, it's sadistic)
6. When I'm flaring, I lose a lot of blood every day, and when I'm not that bad there's usually at least a little on the toilet paper
7. A lot of times, I'll get nausea and chills while having a BM, sometimes I have to have a garbage can in front of me just in case! Though I've never actually vomited, except once when I had the flu or something.
8. Also most of the maintenance drugs I've tried (Asacol especially but also Colazal and Pentasa) make me worse for sure but the doctors never want to believe me and always just stick me back on prednisone >:(

You're definitely not an oddity!!! But I certainly feel you on the sad note. I was actually just sitting here feeling depressed about my colitis as well when I read this. It's so frustrating knowing that the only way to really get rid of it is to take the huge drastic step of surgery. And then I read all these colon cancer reports and it feels like I'm almost guaranteed to get it some day. The other day at work, we had a kid my age come in with a bowel obstruction related to IBD and they found that he had advanced colon and liver cancer and he had to have an immediate colectomy and they still didn't expect him to live more than a year. It really freaked me out. :(

At least we have each other to talk to though.
Posted 5/8/2008 2:53 AM (GMT 0)
princesscolon - Have you tried any probiotics besides Culturelle? When I tried Culturelle 3 different times it made me start bleeding each time. I have been taking primadophilus reuteri every day for months and I also take Ultimate Flora sometimes and neither of these have made me bleed...they both seem to help stop bleeding and decrease my BMs (maybe, hard to tell what's working).

Has Crohn's been completely ruled out as a possibility for you? I ask because of the deep rectal ulcer and the fact that Flagyl helps you. Oddly enough, whenever I'm on antibiotics my UC is usually better behaved, too.

quincy - If probiotics were seen as a foreign invader in some UCers' guts, couldn't that potentially be a good thing because then the colon would have an actual invader to fight off instead of perceiving the healthy colon as a foreign invader and attacking itself? Kind of like the whole hookworm/parasite studies/treatments.
Posted 5/8/2008 7:59 AM (GMT 0)
Makes sense Sara...just throwing out a thought. The hookworms aren't something that multiply I don't think...like certain bacteria. I don't know if excessive reaction happens initially with the worm therapy then eventually the reaction lessens..

Since you bleed, it means that the colon is already in a fragile state...therefore, the response is at the ready, so to say.

Maybe for fragile colons, some probiotics don't agree for whatever reason?

Maybe the dosage of the culturelle is too much for your colon? Maybe you didn't take the culturelle long enough to allow it to do its thing?

The fact that what you take agrees is a good thing...maybe you need the combo instead of one kind of probiotic. Culturelle does contain a prebiotic..inulin...seems it should be more of a good thing, but it would make the probiotic more effective, so maybe that's not a good thing with a fragile colon.

All formulated guesses that might not even be worth a second thought.

quincy
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