I feel like a UC freak

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princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 5/6/2008 9:46 AM (GMT -7)   
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
 
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


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 5/6/2008 9:53 AM (GMT -7)   
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.
Jessica 26/F On Entorcout again...
dicyclomine 10Mg before meals/bed
Citalopram 10 MG
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)


princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 5/6/2008 10:04 AM (GMT -7)   
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.
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


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 5/6/2008 11:11 AM (GMT -7)   
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.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Entocort, and Remicade
On Humira since 1/08 with promising results, but can't get below 5mg Prednisone
Take Tylenol #3 as needed when not in close proximity to a bathroom.
Currently on 40mg Prednisone again since mid-March flare, ack
4/9/08 Humira dose increased to 40mg/week, Start slow Pred taper


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 5/6/2008 12:50 PM (GMT -7)   
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.
Jessica 26/F On Entorcout again...
dicyclomine 10Mg before meals/bed
Citalopram 10 MG
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 5/6/2008 12:52 PM (GMT -7)   
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.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30096
   Posted 5/6/2008 12:57 PM (GMT -7)   
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
*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 !!!


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2201
   Posted 5/6/2008 3:09 PM (GMT -7)   
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.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30096
   Posted 5/6/2008 3:13 PM (GMT -7)   
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
*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 !!!


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 5/6/2008 3:39 PM (GMT -7)   
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.
Dx Ulcerative Colitis 1999; IBS; GERD; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Prozac, Endocet (as needed), multi vit, probiotic, fish oil, calcium 1200 mg./day, Prednisone (off/on, unfortunately).


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/6/2008 4:33 PM (GMT -7)   
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!
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


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/6/2008 8:26 PM (GMT -7)   
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.


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


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 5/6/2008 9:09 PM (GMT -7)   
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.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
Sept. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/6/2008 9:18 PM (GMT -7)   
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.  


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


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/7/2008 5:43 AM (GMT -7)   
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.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 5/7/2008 11:06 AM (GMT -7)   

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


Yafit
Regular Member


Date Joined Apr 2008
Total Posts : 53
   Posted 5/7/2008 11:15 AM (GMT -7)   
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 !!

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/7/2008 3:37 PM (GMT -7)   
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.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
10mg Lexapro (for depression/social anxiety)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
10meq Potassium
 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 5/7/2008 7:53 PM (GMT -7)   
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.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv


quincy
Elite Member


Date Joined May 2003
Total Posts : 30096
   Posted 5/8/2008 12:59 AM (GMT -7)   
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
*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 !!!

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