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Ulcerative Colitis
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Posted 12/15/2008 6:41 PM (GMT 0)
I have been flaring for so long, I dont remember what normal is.  Obviously, 1-2 formed bowel movements per day with little gas, no urgency would be ideal. 

so, my question is this -- what should I be satisfied with?  I was on remicade for 2 yrs and I was pretty well controlled... 2-3 bowel movements per day and only had to take as needed meds 2-3 days per week, no urgency and more formed than unformed stools.

Then the remicade stopped working. for about 5 months it got worse and worse. 

 Last remicade seemed to be working for a few days.  now, I am going 4-5 times per day, I need daily as needed medications |(Imodium) , and it is never formed, and there has been urgency.  I dont think this is normal.

 The doctor said I  can try Humira if the remicade continues to fail, but I dont know if I should just be satisfied with what I ;ve got.

??? also, I know if I call my GI, I wont get in until after xmas... annoying@

Posted 12/15/2008 7:10 PM (GMT 0)
test
Posted 12/15/2008 7:15 PM (GMT 0)
Basically in my opinion, when your toilet habits are like they were before you got sick is when you're in full remission.

:)
Posted 12/15/2008 7:15 PM (GMT 0)
No, it's not normal and you shouldn't settle for it. I'd be concerned about taking lotomil and immodium daily as I think these can cause more problems then they solve with frequent/long-term use.

Has your doctor talked to you about dietary changes? about restoring healthy gut ecology with probiotics? Have you tried l-glutamine as a natural supplement that can be very helpful controlling D and urgency?
Posted 12/15/2008 7:16 PM (GMT 0)
what kind of dose of l-glutamine?
Posted 12/15/2008 7:24 PM (GMT 0)
and what is the problem with long term use of lomotil and immodium. I never take them continuously. i always take at least an 8 hour break so I can actually go to the toilet. and I always take 1 day off per week so I am not dependant and otherwise I end up with too much gas.
I know that taking these every day is not an answer, but to be able to go to work, out with friends, heck-- even to be able to go xmas shopping, I need them.

so what is the problem? besides a false sense of wellness.. I know that I am stil very very very inflamed.
Posted 12/15/2008 7:25 PM (GMT 0)
I agree to not settle considering you're not responding to the Remi.. and you are still having symptoms.  What exactly are your symptoms? 

When was your last c-scope?

I ditto princesa's concern regarding lomotil and imodium daily.  Maybe you could consider to use something like Metamucil Smooth or other fibre supplement.

I'm wondering if you use any artificial sweeteners?  They can cause some havoc on the digestive tract.

Are you on any bild salt/acid meds ?  Are your liver enzymes, etc still in order?

What was the reason you had the liver transplant...for PSC...if not, why?

q

Posted 12/15/2008 7:31 PM (GMT 0)
thanks for everyone's feedback

I have had everything - rectal - oral - steroids, 5ASA - all that stuff.

I will call my doctor right now. He said that if the remicade is not working, I can try Humira... cross fingers. it is frustrating because remicade did work for almost 2 yrs and I dont have antibodies to the drug.
Posted 12/15/2008 8:04 PM (GMT 0)
I had the liver transplant for Primary sclerosing cholangitis -- how did you know?

my liver enzymes are fine. My liver doctor is very happy with how I am doing.

I drink diet coke every day... that is a lot of artificial sweetener. but I LOVE it!! It will be hard to give it up. but I wil today and we can see how that helps.

I think my last scope was last xmas.. and even though my symptoms were well controlled with the remicade, my GI did say that the colon was still very inflammed.

I would use metamucil, etc to help control but I find the only thing that works is immodium for control and urgency. If I take metamucil, it may help form my stool and even slow down the number, but I cant guarantee it will prevent the urgency (I have patients that can attest to this in the pharmacy) and I cannot risk urgency when I am working.
Posted 12/16/2008 2:56 AM (GMT 0)

I agree with you with Imodium - I feel the best and under control when I take it.  I can take only 1/2 but need it when going out especially where there is not a bathroom or time, etc.  Doctor gave me ok to use it.  I know I am not in complete remission but feel like I have to have a life in the meantime.  Metamucil, even in small amounts, give me so much gas.

Anyway, Align probiotics seems to be helping me most right now.  Hoping I can get just a little bit stronger rectal suppository than I am using which is Proctofoam - seeing NP Wednesday.  If I can use Imodium and sometimes Pepto for nausea I could live with UC the way it is - just afraid it will get worse again.

ElaineNY

Posted 12/16/2008 3:10 AM (GMT 0)

kops2da said...

I Metamucil, even in small amounts, give me so much gas.

ElaineNY


that is normal, it's just your system adjusting to it, if you'd continue with it, the gas will go away and the benefits from taking fibre supplements are so worth it.

:)

Posted 12/16/2008 4:23 AM (GMT 0)
If u switch to Humira, make sure u get the pens. They are very convienent and not time consuming.Good luck!
Posted 12/16/2008 8:43 AM (GMT 0)
needsnewbody.....I have psc (and or pbc) in early the stage. I want to keep it that way. I'm now on URSO, and at least the liver enzymes are normal.

When were you diagnosed?

is your UC throughout or limited?

Have you yet tried the 5-ASA enemas while on the Pentasa?

Do try to stay off the diet drinks...how many do you have?  They are addicting because of how they affect the hunger centres in the brain...to get enough sugar/carbs for the free flowing insulin that's in your body after drinking the stuff.

Do you like coffee?

quincy

Posted 12/16/2008 3:30 PM (GMT 0)
I am going to get off the diet drinks today.

I dont drink coffee.. that stuff makes regular/ non-UC people go to the bathroom, I could barely handle that when I was pre UC. but, i do drink decaf.

I was diagnosed with PSC at age 14yrs, I never had any symptoms except increase bile everywhere that made me ithcy and very jaundice. as the jaundice got worse, the enzymes increased, and I became more fatigued. that was when I got the transplant at age 28.
the UC was diagnosed at age 14 also, not at the same time as the PSC, but I had one flare and then nothing. I didnt take any medication or anything at all until after the transplant. I had a huge flare after the transplant where I was going often, urgently, etc. For almost 1 yr my doctors tried everything -- all the drugs. Then I was put on Remicade. everything was normal again for almost 3yrs... now, I am hoping to try humira to be back to normal.
Posted 12/16/2008 3:46 PM (GMT 0)

pb4 - I MAY try fiber supplements again - but Align is working fine for me - formed regular stool.  Only problem now is little cramping and blood every morning with first bm.  I usually have two - regular formed - doc said my UC is now confined to rectal area but Procotofoam is not healing it very fast.  I have appointment with NP tomorrow (if I get there - we are due a storm) and will ask about supplements, etc.   I love the Align and when I ran out for three days it is was terrible.  Been having more problems retaining the foam so going to ask about a suppository (which I can do fine) with small amount of steroids to try at least a few times a week maybe.  I am soooo sensitive and cannot take anything with mesalamine.

ElaineNY

Posted 12/16/2008 7:01 PM (GMT 0)

neednewbody said...
and what is the problem with long term use of lomotil and immodium. I never take them continuously. i always take at least an 8 hour break so I can actually go to the toilet. and I always take 1 day off per week so I am not dependant and otherwise I end up with too much gas.
I know that taking these every day is not an answer, but to be able to go to work, out with friends, heck-- even to be able to go xmas shopping, I need them.

so what is the problem? besides a false sense of wellness.. I know that I am stil very very very inflamed.

Antispasmodic antidiarrheal products slow the spasms of the intestine, interfering with your colon's natural ability to move things along. As you said, it gives you a false sense of wellness which could mask worsening symptoms and cause you to develop severe complications like toxic megacolon. This is not to say you can't use it occasionally, but I certainly wouldn't become reliant upon it, using it on a daily basis.

quincy said...

Do try to stay off the diet drinks...how many do you have?  They are addicting because of how they affect the hunger centres in the brain...to get enough sugar/carbs for the free flowing insulin that's in your body after drinking the stuff.

Do you like coffee?

quincy

In addition to weight loss concerns, diet drinks containing aspartame are particularly to be avoided because of the reported adverse reactions. Here's a link to learn more.

http://www.mercola.com/article/aspartame/dangers.htm

Posted 12/16/2008 11:21 PM (GMT 0)

The report is the opinion of Dr. Mercola and there is a disclaimer.  We all are entitled to our opinion and I am sure he has done his homework.

My husband and I have used every sweetener on the market for 50 years or more - starting with saccharin.  Now he uses Equal, I use Splenda - tried Stevia - too bitter.  Anyway, we have not had any adverse affects we can claim to be from any of the sweeteners.  No obvious side effects.  I know that Equal and Splenda helped me lose 70 lbs. a few years ago.  I feel the bottom line to be anything you can tolerate in moderation - we are all different.  Natural is better but some of us (like me ) can't tolerate natural, raw or organic.

As I have said before I have taken IModium probably since it came out - at least 30 years for IBS "D" - however, it is no substitute for the UC medications to heal the colon.  Just that some of us need to out and about - not in bed waiting for the next pain, cramp or BM.  Those who need to be at work, etc. while taking other medications - need Imodium or similar.  I want to heal up but it has been since May, probiotics work great - nothing else does - can't take mesalamine, sensitive to other medications and will NOT take steroids.

 Going tomorrow to talk once again to the NP (who confers with my doc) - it is frustrating and I have to take the Imodium which works for me for cramping, etc. when away from home.  Just be sure you ask your doc.  Mine agrees.

ElaineNY

Posted 12/17/2008 2:29 PM (GMT 0)
     Everything in moderation I say.  My grandmother was a diabetic and I can remember her taking saccharin in her coffee and she lived to be 83 and died of heart disease.
Posted 12/17/2008 3:53 PM (GMT 0)

Yes, I had two grandmothers who lived past 90 as my Mother did.  None of them ate healthy really or exercised much.  And my Grandfater who lived to be 75 (many years ago that was old) NEVER ate a vegetable.  Probably why I don't like them!

I had to cancel my appointment with gastro NP today because of icy roads.  I will go January 9.  She said to call if I got worse and she could probably work me in.  I just stay same - no worse, no better.  No remission!

ElaineNY

Posted 12/18/2008 10:46 PM (GMT 0)
So I went to GI yesterday -- shocked that he somehow fit me in within 48 hours. unheard of.

He has switched me to Humira. I am hoping to start before Xmas.

I asked him about aspartame, and thankfully, he said I can continue to have my diet coke. He also told me that it is fine if I am using Lomotil and Immodium to keep myself under control, as needed.

I dont think there is any danger of using Immodium as long as you dont take it continuously (you should take a break for 12 hours a day _ I would think so you dont get backed up and uncomfortable) And, although, some say it masks your true illness - as soon as you have a colonoscopy or take one day off... you know your status.

cross your fingers for my response to humira
Posted 12/18/2008 11:00 PM (GMT 0)
okay... I'm not to this point that you all are talkin about yet....... but I was told by others to avoid immodium. My doc said it was okay in small doses. I NEED to go xmas shoppin and am scared to death. Is this a safe option for a day trip? besides toxic mega colon are there other side effects? will it make my flare last longer? At times toxic mega colon doesn't even sound that bad.
Have had a few other questions and experiences today, but they are for their own topic. Please answer and help on all topics. havin a bad day. TY
Posted 12/18/2008 11:03 PM (GMT 0)
my GI (and my liver transplant specialist) have both agreed that imodium to do things - like go to work, is totally acceptable.

as long as you dont get dependent on and use it instead of telling your GI that you are worsening. and as long as you dont take 2 immodium every 2 hours.. that is over doing it and you are guaranteed to get toxic megacolon
Posted 12/19/2008 1:39 AM (GMT 0)
LONG before I had UC I have IBS and have always used IModium for those times when needed.  Only when having a bout of diarrhea before.  Now I use it AFTER my usual 2 or 3 BM's in the morning when going out.  If staying home, I don't take it and sometimes have more BM's but not usually.

My doctor also told me to take it as needed.  I find only 1/2 works for me.  I took the most in Vegas as we were busy.  I got up two hours before wanting to go out - had my usual BM's - then took 1/2 Imodium about 3 times a day and next morning started over again.  For a week I felt great - used the rectal foam 4 times while there and had no problems.  When I got home I backed off because I could stay home more.  You never forget you have UC if you are flaring for sure. 

I am not sure everyone with UC or Crohns should take Imodium at all - just know about myself and what my doctor recommended.  Some do get constipated and have to take laxatives so that woudl not be good.

ASK YOUR DOCTOR!!

ElaineNY

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