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Ulcerative Colitis, need advice

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Ulcerative Colitis
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Posted 4/30/2010 4:27 AM (GMT 0)
Hi, I  am new to the forum and am 44 years old, was diagnosed with ulcerative proctitis 2 years ago after I had quite smoking.  My first episode was treatedwith Rowesa enemas and I  was startwed on Lialda 2 pills per day...did well and started missing doses..flaired June of 2009 and ended up on Prednisone for 3 months Rowesa enema for a few weeks. Again did fine but flaired again in Feb 2010. Prednisone for 5 weeks and increased my Lialda to 3 pills per day.

Besides the bleeding and full feeling/ lack of appetite I also get mouth ulcers really bad sometime 3 at a time....and the inside of my nose feels raw..bleed easily and my nose constantly drips clear...I have taken Zyrtec to try and help but it doesn't do much. When I am on Prednisone I have no GI symtoms and no mouth ulcers also my nose feels better...not perfect but better.   I'm told the mouth ulcers are related because they are similar tissue.

I came off Prednisone 3 weeks ago and had my first episode of bloody gas...not even a bowel movement but bloody gas...and now have 3 moth ulcers.

not sure my doctor is of much help...but of course I am fortunate to not have any pain...just mouth ulcers and rectal bleeding/pressure/small bm's but not to frequent.

Any suggestions???

Only medications

Lialdia 3 per day

Multi vitamin

Zyrtec couple time a week

Posted 4/30/2010 4:41 AM (GMT 0)
I had that nose issue for months when it was cold and dry outside. I completely forgot about that period of time until you mentioned it. Funny how annoying it is when it happens but when it goes away, it's as if it never happened. I think the best thing for that nose bleeding/dryness is probably a humidifier. Did you try one? Mine cleared up when the weather warmed.

I am sorry you're having so many problems with your treatment. My doctor said we really should not flare so often if we are on maintenence medication. You flared while on Lialda which could mean it's not working for you. There are other drugs you could try, apriso is anotehr 5ASA or Colazal, I've just started Colazal and I am not sure how helpful it is but I seem to be doing fine. You could try using your enemas more often or using an enema at night and a suppository in the morning. You could try increasing your dose of Lialda to 4 a day (the max dose)... there are some options but you need to find a doctor who understands IBD and is willing to try different things. If you don't like your doctor, get a 2nd opinion.

I get canker sores too but never 3 at once. I've had 2 at once and not recently. I did have a crack in my lip the other day which was painful and annoying but thankfully it is gone now.

Posted 4/30/2010 4:46 AM (GMT 0)
Hi...welcome to the forum.

I would suggest you continue on the rowasa nightly for at least a month to make sure the rectal inflammation being taken care of.
You're still on the Lialda?....try not to miss any doses.

Why did the doc put you on prednisone...were you not improving at all on the Rowasa, or did you just stop using it after and not tapering?

quincy
Posted 4/30/2010 6:29 AM (GMT 0)
I really hate the rowasa, to me there is nothing worse. I used it for about a month the first 2 flaires but was not prescribed it this time.  Prednisone really made a difference and within a week I had no bleeding or tissue looking discharge...normal stools...no mouth ulcers..good appetite and my nose felt better. I was wondering if the nose soreness and drainage coulsd be related to the Lialdia. When I start to flaire it seems that I lose my appetite as if food does not move thru my GI track and empty

I actually came off medication the first time...cause I did not believe the doctor and that I suddenly developed UC when I stopped smoking...to I was treat fro a year, came off meidcatin and lasted 6 months before I had my first flaire.  I did miss several doses just before the second flaire....but have not missed any medication over the last 8 weeks and seem to be having problems again now that prednisone is done.

Posted 4/30/2010 8:16 AM (GMT 0)
Hi,
I was diagnosed with Ulcerative Colitis two years ago after suffering for a few months unaware of what I had. I was 31 and it came on so suddenly. I went through the whole process most go through. I went on prednisone and it started working right away. After three weeks it stopped working but I finished the cycle for a month. I took lialda for a few months but I ended up going into a downward spiral.
I am a natural kind of person so I tried every holistic treatment I could think of. Acupuncture, Nutrition (no gluten, dairy, soy or eggs), Past Life work and other deep stuff. I paid hundreds for Aloe Elite, drank aloe juice, took Omega-3s and all the things people suggest. No difference.

After getting a colonoscopy, I told my G.I. that I had no intentions of getting on western meds again. In a seemingly unprecedented gesture, he told me about the Cedars Sinai Chinese Herbal Regimen for Ulcerative Colitis. Take this combination three times a day:
(2) RF Plus, (2) Flavonex, (3) Isatis Cooling

Here's where to order them:
RF - ritecare.com ($45)
Flavonex - holisticchineseherbs.com ($20)
Isatis Cooling - aculanta.net ($16)
Total for six week program=$214

I noticed the difference right away and within 7-10 days the bleeding had stopped and b.m.'s were starting to return to normal. I started to regain the 25 pounds I lost and reclaim my life. Thankfully I now live a normal existence, eat whatever I want and feel fine. My doctor told me he thinks that I could get off the pills but I choose to keep taking them. I figure it can't hurt. I stopped taking them at one point for a few weeks and noticed no difference so that was reassuring. Now I take them just twice a day.

I wish you well,
Tyler
Posted 8/3/2015 9:00 PM (GMT 0)
I know this is 5 years old, but wanted to ask if you are taking any other supplements besides these 3 products? Are you still staying on a strict diet?

I started on them a couple weeks ago and they are definitely helping!
Posted 8/5/2015 2:45 PM (GMT 0)
It's common with UC to get what's called apthous ulcers in your mouth...its one of the many manifestations of the disease along with ankylosiing spondylitis (arthritis of the spine), iritis, gallbladder disease, etc...assuming they aren't normal canker sores or worse......lol

hope this helps.
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