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Posted 1/14/2012 11:31 PM (GMT 0)
hi Everyone,

I posted a few weeks ago about returning to the work force after being absent for 4.5 years and my anxiety about it.
In order to make it through the long drives and long day I have been taking immodium, fiber, asacol and cortifoam. All have been helpful. Problem is the immodium. Although it will stop the d, for a day it causes bleeding and mucus. I only used to take it when I was going out and very infrequently. But now I'm working I've been taking it regularly and it's caught up to me in a BAD way. The fiber etc has slowed things down but I've been to the bathroom 20 times today just passing blood. I have to pass gas but blood just comes out. My stomach is distended, I'm bloated, in pain and generally feel yucky (that;s not the word I want to use.)

I'm stressed out about how I'm going to handle things on Monday.
Does anyone else have this experience with immodium? Any suggestions?
I have to wait one more month before my next IVIG treatment before I go into remission again.

Thanks for your help,

Ruby
Posted 1/14/2012 11:38 PM (GMT 0)
Dude man, you have a problem. You can't rely on Immodium to help with your problem. It's like taking a water gun to stop a house fire. Common man,in 4.5 years, you never found remission or what brings you close to remission?

20 times?!?! whoa! I think your colon is flaring like mofo'.

I suggest big drugs/diet change or surgery, to be honest.
Posted 1/14/2012 11:44 PM (GMT 0)
Hi Ruby, I am sorry to say it but you need to address the inflammation. What dose of Asacol are you taking? Do you use cortifoam once a day? Have you tried using cortifoam in the AM and Rowasa before bed? The only thing I can think of would be a dose of prednisone to get you back on track until your next treatment. 20x a day is pretty severe. I am very sorry. I have been there and I know how tough it is. I was able to manage my last severe flare up with prednisone (yuck). Finally I added 6mp and I've been doing much better since. I regret the prednisone I took but it did get me feeling better quickly and if you can take it for a month or 2, you shouldn't have many side effects. Did you call your GI? They would probably push you toward pred or Remicade.
Posted 1/15/2012 12:05 AM (GMT 0)
Thanks for the response. I'm on Asacol 800mg x 6 and corifoam day and night. It's just the immodium that causes this bleeding for me. Cannot take steroids. As I said I just have to find a way to cope until my IVIG which will give me blessed remission again. This flare was brought on by anxiety about working again, the adjustment, socializing and concentrating in 3 hour meetings.

Just have to find a way to cope for another month...
Posted 1/15/2012 12:12 AM (GMT 0)

rbartolo said...
Thanks for the response. I'm on Asacol 800mg x 6 and corifoam day and night. It's just the immodium that causes this bleeding for me. Cannot take steroids. As I said I just have to find a way to cope until my IVIG which will give me blessed remission again. This flare was brought on by anxiety about working again, the adjustment, socializing and concentrating in 3 hour meetings.

Just have to find a way to cope for another month...

IVIG? what is that juice that they give you?

Are you a taking a biologic? is that the IVIG?

A juice that gives 100% remission, every month, I want in on the secret. smilewinkgrin

Post Edited (Somedude) : 1/14/2012 5:18:26 PM (GMT-7)

Posted 1/15/2012 12:31 AM (GMT 0)
Finally someone asks about IVIG! It's Intavenous Immunoglobulin. Colitis wasn't my only health issue. I became deathly ill with Pyoderma Gangrenosum sp) 4.5 years ago. It's basically a flesh eating disease that affects those of us with IBD. To say I was deathly ill is an understatement. My team of docs discovered that IVIG not only cured my PG but also put colitis in remission. IVIG is basically antibodies. 1000 blood donors are needed to make one dose of IVIG. The argument and medical evidence suggests that those of us with IBD lack the antibodies to fight the disease ourselves which is why we get sick. So giving us the antibodies from an external source should work and for me it did. My last flare was in April so IVIG has held me for about 8 months. It was time for another infusion, but I got this job instead and my anxiety increased because I could feel the flare coming on at the same time.

There are small studies to support the use of IVIG with IBD, but they are there. The problem is getting your GI to prescribe it. The cost is astronomical and it's more intensive to administer. It literally saved my legs, and my life and the bonus was that I finally found something that works and makes sense. I have to cross my fingers every time I schedule the treatment because it's so expensive the hospital could pull it at any time. But frankly I get a lot of empathy for what I've gone through.

I'd be happy to answer any other questions Somedude as I'd like to get the word out. Another GI who prescribes this helps all of us!
Posted 1/15/2012 12:42 AM (GMT 0)

rbartolo said...
Finally someone asks about IVIG! It's Intavenous Immunoglobulin. Colitis wasn't my only health issue. I became deathly ill with Pyoderma Gangrenosum sp) 4.5 years ago. It's basically a flesh eating disease that affects those of us with IBD. To say I was deathly ill is an understatement. My team of docs discovered that IVIG not only cured my PG but also put colitis in remission. IVIG is basically antibodies. 1000 blood donors are needed to make one dose of IVIG. The argument and medical evidence suggests that those of us with IBD lack the antibodies to fight the disease ourselves which is why we get sick. So giving us the antibodies from an external source should work and for me it did. My last flare was in April so IVIG has held me for about 8 months. It was time for another infusion, but I got this job instead and my anxiety increased because I could feel the flare coming on at the same time.

There are small studies to support the use of IVIG with IBD, but they are there. The problem is getting your GI to prescribe it. The cost is astronomical and it's more intensive to administer. It literally saved my legs, and my life and the bonus was that I finally found something that works and makes sense. I have to cross my fingers every time I schedule the treatment because it's so expensive the hospital could pull it at any time. But frankly I get a lot of empathy for what I've gone through.

I'd be happy to answer any other questions Somedude as I'd like to get the word out. Another GI who prescribes this helps all of us!

Lol ,you sound like a junkie waiting for his/her next fix. As long as it works, it's all good I guess. How much it costs? Are you paying it all, or your insurance?

Never heard about this, interesting.
Posted 1/15/2012 12:48 AM (GMT 0)
Are you sure that Immodium is causing bleeding? I would suspect fiber and inflammation before Immodium.
Immodium just slows down the GI tract whereas fiber has the bulk to cause bleeding in an inflammed gut.
I think your combination of Immodium with fiber is the real problem.

Staying on Immodium for an extended period is not good because you are disrupting your normal gut actions but in the short term my doctor feels it's not harmful.

My suggestion would be to cut back on fiber a little, choose soluble fiber rather than insoluble fiber.
And try taking a stool softener (one without a laxative) every day, I've found it helps quite a lot and I eat a lot of fiber by choice (but do not use Immodium any more-not needed).

Good luck.
Posted 1/15/2012 12:48 AM (GMT 0)
I agree with Notso but seeing your allergic to steriods that is a major problem. I use Immodium but its not daily and I've never had a problem. Are you worse if your not taking it because it sounds like your already in the bathroom alot.
Posted 1/15/2012 12:48 AM (GMT 0)
Absolutely a junkie! Very funny. I like your humor Somedude. And yes 20 times a day is enough to have me dreaming of my next fix. Hopefully I'll be better by Monday, it's just today that the bleeding started and I knew with the amount of immodium it would happen.

Do the research. It's worth it. I've heard it runs about $15G's per infusion based on your body weight. They found that 3 infusions every 3 months worked for me. But if I don't need it, I don't go every 3 months. Sadly I have to be conscious about the cost when requesting treatment because I know it can be pulled. OHIP does not cover it so the hospital picks up the tab. (I'm in Toronto.)
Posted 1/15/2012 12:48 AM (GMT 0)
I am interested too. No one has ever mentioned it to me as a potential treatment.
Posted 1/15/2012 12:58 AM (GMT 0)
No GI/doc would because it is not well known or an "accepted" medicine for IBD. Had I not contracted flesh eating disease I would have never known about it and likely would have continued to suffer with colitis. I'm the type that never hit remission for 7 years despite being on everything, eating nothing and still suffered. IVIG is used to treat other autoimmune illnesses and blood disorders too.

Immodium has always caused bleeding for me, unless I use it once a week. I take fiber almost daily to firm things and slow things down. It's just that I needed to take so much immodium over the last 2 weeks, just to get me through the hour drive to work. As I said it's short term until I get IVIG but it was the timing that is unfortunate. Had I been in this flare, I wouldn't be taking so much immodium...just use fiber and asacol until my next treatment. BUT because I started working I had no choice to rely on immodium. It works and it has helped, but today everything caught up with me.
Posted 1/15/2012 1:20 AM (GMT 0)
My GI told me never take immodium instead use kaopectate. But there is another herb that will do the same job as immodium with out any side effects it's name is juanilama. Ten years ago I used to take it. It did it's jobs well. But you should really look into modifying your diet or using other drugs.
Posted 1/15/2012 2:20 AM (GMT 0)
How do you know Immodium is causing bleeding? I would think the fiber would be the cause.
My daughter just had jpouch surgery and she takes immodium and probably always will. I don't think it is a bad thing to rely on, as long as you make sure you don't get dehydrated.
I am sorry you are going thru this...working while having flares is so stressful. My daughter stopped going to regular school 11/2 yrs ago because it was just too much
Posted 1/15/2012 1:03 PM (GMT 0)
rbartolo

I've had problems taking Immodium, too. Makes me nauseous.
Lomotil is another possibility.
Hope you're taking an iron supplement if you're bleeding a lot. That, too, might slow things down.

The fiber may not be helping. As far as I know, you should be only taking soluble fiber. Several people who contribute to this forum use psyllium (sp?)
Do you take probiotics?
Diet also plays a big role in helping with symptoms.
Posted 1/15/2012 2:26 PM (GMT 0)
Wow... sounds like you're in a bad way! My GI & I have talked about IVIG, it's used for some auto-immune disorders, that's why you find it helpful in controlling your UC. But, from what you described, it doesn't seem like it's helping you much- if you have a month to go, & are experiencing heavy bleeding & 20+ bm's a day, this therapy has obviously failed you. I can't imagine any GI or doctor would think this is normal, & that it's working as it should be. Immodium should not be causing bleeding- I use it about 1x a week, with no adverse effects- if I found myself relying on it daily, I'd be calling a surgeon ASAP. The fact that you say you're stressed out already about Monday leads me to think you may have returned to work way too soon... it may be time to think about a different job! I'm sorry you're dealing with this- you've got to find a way to cope better, stress is not going to help your UC. What about the bioloigcs, have you not tried any of them?
Posted 1/15/2012 3:06 PM (GMT 0)
Actually Eva Lou IVIG is controlling my UC it put me in remission for 8 months. It works, it saved my life (see above) . It's just that I am due for my next infusion in Feb, but started to flare in Jan as I returned to work. Remicade, diet never worked for me, where as IVIG does (and it's also safer than any biologics). This therapy has not failed me. I never entered remission using Remicade, and remicade caused my PG. I would highly suggest taking to your doc about IVIG too.

YES Immodium causes me to bleed every time. I am much better today because yesterday I didn't take any. Won't have too until Monday. No passing of blood and formed bm's, no cramps. The worry is of course I need the immodium during the week. I only take 1 day and as I've said it's only for 2 -3 weeks until my next infusion.
Posted 1/15/2012 5:39 PM (GMT 0)
you're not in remission- remission doesn't last 6 or so weeks, then fade away until your next med dose. If you need to rely on Immodium daily to get to work, you're not in remission- it's pretty simple. I've spoken w/2 docs about IVIG for UC, I haven't had the need to try it myself, luckily. Well good luck to you- I'm sure you're anxious for your next "remission" to start. I don't mean to sound harsh, but surely you can see that having symptoms such as you describe, whatever the reason, does not equal remission??? If you plan to continue working (& think that's the cause of your symptoms), are you really willing to live like this (using Immodium daily, then having hellish wknds) for an indefinite amount of time?
Posted 1/15/2012 6:31 PM (GMT 0)
I don't think you understand Eva Lou I've been in remission for 8 months not 6 weeks. And I'm not claiming to be in remission now. Where did I say that? I'm currently flaring. And I had to return to work after 4.5 years. I want more and am far too young to be on disability. Right now it's just adjusting. Disability is only $600/month. (I accept donations btw!)

The thing about IVIG to remember is that there is no dosage formula. It's still in it's infancy stage. So they are still playing with the dosage. The question is: if I am doing so well, do we skip 1 infusion, or 2 or 3? Do we give you a prophylatic dose anyway? I've done remarkably well on IVIG and evident on my before and after scopes. Most of us do go through periods of flares and remissions, some more severe than others. The thing about UC is that the treatments are so subjective. I notice you are on biologics. They never worked for me and frankly almost killed me. I'm happy with IVIG and the treatment has allowed me to return to work and have a "normal" life. Hopefully this flare is manageable and I can make it through until my next infusions. I'm sure I'll be back in remission that will last longer than 8 months!

I'm much better today! Only been twice and no blood!

In what city is your GI? I'm in Toronto and my GI is always interested in talking with other docs about IVIG
Posted 1/15/2012 6:40 PM (GMT 0)
I'm in the States, Massachusetts- a doctor in Boston I used to see frequesntly, due to an auto-immune skin dosirder, pemphigus, uses IVIG as a treatment nowadays. I had to see him a year or so back, when I had a flare-up of the skin condition- at the time, we discussed IVIG if need be, & he thought it would probably help with the UC as well. The skin flare-up got better using topical steroids, so that was that. I discussed IVIG with my gastro, who thought it'd be worth a shot if need be. But like you said, it's crazy expensive, it's not easy to find a trtmnt. center that uses it, obtain insurance coverage, etc. I'm lucky in that if I do need it, my doctor in Boston has been using it for years! If you're happy with the way things are, that's fine- but you do say you're under stress due to work. That's not to say go on disability! I'm surprised your doctors think it's ok though, to have the amount of symptoms you are having. I've had so-so luck with the biologics- Remicade nearly killed me, Humira has been making my day-to-day life pretty good, but I'm not in a clinical remission by any means. I do hope you continue to get better, & that your work doesn't stress you out so much- maybe for the car ride, pack a change of clothes, just for peace of mind?
Posted 1/15/2012 6:48 PM (GMT 0)
Actually I haven't been in contact with my doc. I think most GI's feel just as frustrated not being able to cure. Easing symptoms is probably the best thing to do as even surgery is no guarantee. It's something I have to ride out until my next infusion. I may be able to move up the dates. I did call and let him know I got a job and he was thrilled!

My skin disorder is pyoderma gangrenosum that was caused by remicade. They thought it would cure PG which it did but were surprised it helped my UC. (Makes complete sense to me). Still I had to fight to get it after it cured my PG. (that is a whole other story!)

Yes I have a change of clothes in my car and a bag of meds in my purse. I'm really careful with what I eat; which is just yogurt and a bit of chicken at work too. I figure if anyone says something I'd just say I have a gluten sensitivity.

Do you think your GI would mind if my GI contacted him/her about dosing etc?
Posted 1/15/2012 7:03 PM (GMT 0)
My GI didn't know all that much about it- my docor in Boston, however, is a world-renowned doctor for pemphigus, & has been using IVIG for a long time. He just recently moved to St. Elizabeths Med. ctr, & is at the Ctr. for Blistering Diseases. He was a savior for me, I was so ill with pemphigus & NO ONE knew what it was. I think if I were to want to try it, it'd a trial & error thing too- my GI would have to consult with the doc in Boston, who knows where I'd get the trtmnt, etc.. But yes, tell your GI how to contact my doctor in Boston- he's fairly open to discussions about trtmnts, dosages, etc. But he's a dermatologist too, so not sure if he'd know much of a therapeutic dose for UC.
Posted 1/15/2012 7:13 PM (GMT 0)
I had a team of people from different hospitals looking after me. And it was a resident dermatiologist who was researching treatment for PG that stumbled across IVIG. I literally was at death's bed for a number of years, almost lost my legs. This derma was my savior. At first no one knew what my skin disease was either...thought it was cellulitis. Anyway once the PG responded to the IVIG, so did my colitis. The derma (although he had empathy) would/could not prescribe IVIG anymore because now it was for colitis. The hospital pulled the treatment. Once it wore off I was in the worse flare of my life. I went 30+ times day and night, accidents in my house. I was miserable, depressed and scared. My life had just been saved and there was something to treat colitis and they stopped it! I had lost everything and felt betrayed. I suffered for 2 months until my GI was able to find another GI to prescribe it. The hospital GI is doing it (under the table) because of the cost. I worry that one day it will be pulled.

I don't know what pemphigus is...will look it up and I'm sorry you too have suffered! It's dreadful
Posted 1/15/2012 7:23 PM (GMT 0)
rbartolo, do you think I could use your post way up above in the success stories thread? I am always looking to add to it to show people there may be options other than the ones your GI mentions.
Posted 1/15/2012 7:29 PM (GMT 0)
you know, I'm sure you could post it in the success stories, but it would cause nothing but frustration for msot people- it's not approved for use in IBD, so getting it covered is next to impossible. It's prohibitively expensive, making Remi & Humira look like cheap-o bets. Even rbartolo's current doc is doing it under the table, illegally... my doctor in Boston has used it illegally also, in the sense that in order to get insurance coverage, he's basically had to commit fraud. He did run into legal trouble, which has since been taken care of. IVIG is not widely known of, it's not widely used, & most GI's would be like "Huh???". Mine was, at first. He's still no fan of it, but would try it if able. Doubtful that he'd jump thru the hoops to get coverage though. If I ever had to try it, I'd most likely go right up to Boston & beg at my doctors doorstop! I suppose "lucky" me, having had pemphigus (which sort of remains in your body, in remission) we could get it covered by an insurer. And hope that it helps the UC. But then again, a derm isn't even qualified to gauge UC, so.. it's a mess, really- if you look it up on the internet, IVIG, you'll see how rarely it's used. Unfortunately, but...  PS- isn't that bizarre, rbartolo- me too, sick as can be, no one knew what it was, some random derm finally thought "Hey, could it be?....."... & my derm in Boston was truly my savior! People die from pemphigus! Those skin things are tough to diagnose, most derms are like "Oh, it's just exzema"...
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