• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Immodium pain

Hello forum. Thanks for the encouragement in your posts.

First off, I will go to the doctor eventually. My insurance doesn't kick in for about another 8 months because of pre-existing condition. Of course, I'll go before then if I have to. Not the ER, though, unless I'm dying because last time I spent four days in there and went almost bankrupt.

Basically, I've been managing this disease for the last couple of years through diet and supplements. But I used Immodium to control diarrhea every few days. Well eventually it got to where I was using Immodium every other day and then almost every day.

Now when I take Immodium the right-lower-side of my stomach, ileocecal region, becomes very painful and hardens. When I lie on my back and press down on this area of my stomach it feels almost as hard as a rock. In order to make the hardness go away I have to stay off Immodium for almost a week but there's still pain and some hardening. Sometimes the pain extends down into my right thigh and that usually occurs the following morning after taking the Immodium.

So I guess that's it for the Immodium. I just hope some severe damage hasn't occurred. I never have blood in the stool and only get the black tarry stuff if I drink wine which isn't often.

The symptoms from person to person seem to vary so much with this disease. But if anyone has experienced anything similar to this I'd appreciate some input.

When I was younger, about 20 years before Crohn's diagnosis, my appendix was removed and I suspect this is one of the culprits. It just seems strange to me that the pain is right there where the scar is from the appendix removal. And there have been studies that those who have had the appendix removed are more likely to get crohn's.
 
Ok, I haven't experienced everything that you have described, but definitely something similar. I also have not taken immodium. I got my diagnosis because of the nagging pain in the same place you are referencing and I also felt the hardening when I pushed on my lower right side. Ended up having a right hemi cholectomy and that brings me to where I am at right now. I still have pain and hardened area on my lower right side, but my GI says I am fine. I just keep watching and waiting to see if I could possibly be in another flare-up. Anyhow, I wish you luck and try to stay strong.
 

Cara Fusinato

Sarcastic Forum Comedian
Imodium doesn't just stop diarrhea, it is actually constipating. If you have Crohn's, you really don't want to constipate yourself because it could create an obstruction. Imodium is a little harsh, you may not wish to continue using it. You may wish to go to your local GNC or Vitamin Shoppe and discuss some of the natural alternatives to help you manage the Crohn's until you can see a Dr. But DO see a Dr. when you can. If the illness is progressing, your symptoms and responses to things like Imodium might be changing and you really might need some prescriptions. OR, see a GI doc. out of your own pocket and then work with the prescription companies to get some assistance until you can get the insurance. As to the appendix, I had mine out and while they were in there, they diagnosed me. I have noticed no bodily changes due to the appendix surgery which was laparoscopic. Take care of yourself. This is a pretty serious illness to risk.
 
I definitely get worse pain after taking Immodium. Once in a while, the diarrhea will get so bad that I'll throw up my hands and decide to take the Immodium just to let myself get a break from it. And, while it does help with the "going," I end up with awful pain in the lower right side (where I get almost all of my Crohn's pain) for a day or two after. Immodium is officially on my list of "dont's," and the few times that I do take it I come away saying "Never Again!!!"
 

Cara Fusinato

Sarcastic Forum Comedian
Yes, I have the Never Agains -- Imodium, Vicodin, Codeine -- all the constipating things. . . the benefit is not worth the risks.
 
Yeah, sounds like it could be causing a bit of an obstruction in the region of the terminal ileum. I don't typically take Imodium anymore either. I was taking it a lot (and Alkaseltzer) when I had my perforated bowel, so I try to stay clear of both.
 
Ended up having a right hemi cholectomy and that brings me to where I am at right now. I still have pain and hardened area on my lower right side, but my GI says I am fine. I just keep watching and waiting to see if I could possibly be in another flare-up. Anyhow, I wish you luck and try to stay strong.
Thanks, it is discouraging as I have relied on imodium to live a somewhat normal life and enjoy good meals every now and then. Now I'm forced to eat very small snack at the beginning of the day and not eat anything significant until the end of the day. You stay strong as well. I think this is absolutely one of the worst diseases around, but there are worse.

If the illness is progressing, your symptoms and responses to things like Imodium might be changing and you really might need some prescriptions.
This is what I'm afraid of. That last time I tried prescriptions, I had a lot of negative side effects from taking 16 pills a day of Pentasa. I will go to a different doctor next time and maybe will be able to try something else.

Once in a while, the diarrhea will get so bad that I'll throw up my hands and decide to take the Immodium just to let myself get a break from it.
My sentiments exactly. But like you say, you always regret it afterwards. I'm to the point where it's not worth it. Well, maybe Christmas dinner next year. :)

Yes, I have the Never Agains -- Imodium, Vicodin, Codeine
It's good that my job requires random drug testing, or else I might consider getting painkillers illegally, and I don't do stuff like that.

Yeah, sounds like it could be causing a bit of an obstruction in the region of the terminal ileum
Yeah, it could be around the terminal ileum. When I had my colonoscopy a few years ago, the doctor got the tube as far as the cecum. If I kept eating normal meals after taking imodium now, I could definitely be in great danger. When I've taken it recently, I've pretty much fasted for the next two days, just small snacks, until I passed something.
 

Kev

Senior Member
Have to concur with the rest. Imodium is too strong.. One of the things it does to be so effective is dehydrate you. which is a no no for IBD. Think this is what aggravates
the digestive system in us. talk to your docs.. ask about safer, gentler alternatives

A natural anti diarhettic (sp?) can be made with simple corn starch. mind you, due to the taste, I'd only use it as a last resort
 
One of the things it does to be so effective is dehydrate you.
When I took it a few days ago I became more dehydrated and fatigued than I've been in a long time. It actually almost knocked me out. I ended up taking a 3 hour nap in the middle of the work day waking up dreadfully thirsty.

I'm finished with it. Here comes weight loss.
 

Cara Fusinato

Sarcastic Forum Comedian
Have you tried some of the alternative nutritional products out there? Mangosteen juice does absolute wonders for me. Perhaps it would be of assistance to you. Probiotics are really helpful as well. There have been many threads on here about what alternatives many of us take. You may want to see if some of them will help keep your symptoms down a bit.
 
I've done probiotics and they do seem to help. I need to get back on those. Haven't tried mangosteen juice. I've also been taking a concentrated form Aloe molecules for the past couple of years which has really helped. It's just in the past couple of months that I've really gone downhill. I'm going in to see a doctor a next week.

If they don't suggest an MRI, should I ask for one? The pain is so bad now I'm willing to go ahead and put it on a credit card. How often are colonoscopies generally done on crohn's patients? It's been at least two or three years since I've had one.
 

Cara Fusinato

Sarcastic Forum Comedian
My experience with a colonoscopy was pretty lame. I was so inflamed they couldn't get the scope past the terminal ileum and they gave up. Did remove a polyp or two. I had to end up getting the most info. from a barium test with the small bowel followthrough. CT scan is also helpful. Just had my second one of those.
 
O

old hat

Guest
Cara Fusinato said:
My experience with a colonoscopy was pretty lame. I was so inflamed they couldn't get the scope past the terminal ileum and they gave up. Did remove a polyp or two. I had to end up getting the most info. from a barium test with the small bowel followthrough. CT scan is also helpful. Just had my second one of those.
I had the same situation. She couldn't get past the terminal ileum to look any further. It was too narrowed. Oh well. That bit is medical waste now.
 
O

old hat

Guest
Sojourn said:
Now when I take Immodium the right-lower-side of my stomach, ileocecal region, becomes very painful and hardens. When I lie on my back and press down on this area of my stomach it feels almost as hard as a rock. In order to make the hardness go away I have to stay off Immodium for almost a week but there's still pain and some hardening. Sometimes the pain extends down into my right thigh and that usually occurs the following morning after taking the Immodium.

So I guess that's it for the Immodium. I just hope some severe damage hasn't occurred. I never have blood in the stool and only get the black tarry stuff if I drink wine which isn't often.

The symptoms from person to person seem to vary so much with this disease. But if anyone has experienced anything similar to this I'd appreciate some input.

When I was younger, about 20 years before Crohn's diagnosis, my appendix was removed and I suspect this is one of the culprits. It just seems strange to me that the pain is right there where the scar is from the appendix removal. And there have been studies that those who have had the appendix removed are more likely to get crohn's.
Pain in the lower right abdominal quarter is common in Crohn's patients. The terminal ileum (far end of the small bowel) is the most common site impacted by Crohn's. That is right where you are saying the pain is located. That is where I get it too.

It is sometimes mistaken for acute appendicitis because the symptoms are very similar if there is an abcess or free perforation in that area as there was in my case. The free perforation. That was a load of fun let me tell you. That's what happened to me back in 2002. You don't have an appendix any more so you don't have to worry about that incorrect diagnosis popping up.

Immodium is generally well tolerated. The generally there is the critical word. Generally but not always. Adverse reactions are most common in cases of chronic diarrhea like we have. Roughly 5% of people have some adverse GI reaction including constipation and something called paralytic ileus or intestinal pseudo-obstruction. The symptoms are the same as a mechinical blockage but are caused by the bowel not contracting properly or not at all. The bowel contents stop moving. Bingo, ileus. I think that happened to me around 2 weeks ago. All the ER doc told me was, "Your bowels are not working like they should. (whatever the expletive that means) This is common in people with...etcetera. Admitting you. blah blah". My bowels are not working as they should? There's news. Find that on the x-ray or when I told you I have Crohn's Disease of the ileum? Uncommunicative doctors bug me.

Btw, Immodium is contraindicated in patients with UC. They should not use this medication. I imagine that applies to Crohn's colitis as well but I haven't seen anything definite there.

I haven't seen anything in the literature about a connection between not having an appendix and developing Crohn's. Can you point me to one? I would be interested in reading that.

There is such a thing as Crohn's Diease of the appendix and it can present very much like acute appendicitis as it did in my case (appendix, terminal ileum and some proximal colon involvement). I don't think that is what you meant though. Crohn's does often recur at the site of previous bowel surgery. That is quite common.

Crohn's Diease isn't all that bad. It certainly is a hassle and some people's quality of life is definitely adversely impacted. I had to take a month off at an unfortunate time and I can't sleep because of post-op pain from my second resection so I know about that one. Some people have much more severe symptoms than me as well. However, as annoying and icky as it can be, it doesn't even lower life expectancy any more.

It could be a great deal worse. Cancer comes immediately to mind. Maybe something like small cell lung cancer. Now that's a nasty one. Very agressive. "Negative patient outcome" aka kicking the bucket is very likely. The last time I was in Clovis Community I saw an x-ray while I was waiting for the small bowel series the surgeon had me do while I was there. I can't be sure but it certainly looked like metastasized lung cancer which is far worse than what I was there fo to say the least. MS, Lupus, ALS, acute porphyria, aortic aneurism. The list goes on. It could be worse. Much worse.

Wow. This reply kind of balooned. It must be the lack of sleep.
 
I haven't seen anything in the literature about a connection between not having an appendix and developing Crohn's. Can you point me to one? I would be interested in reading that.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12512028

I don't know if this is the same study when I researched it before. This study says it increases the risk for women but not for men, and I'm male, so I guess my theory could be wrong. Sometimes I feel like opening that appendix scar and ripping my intestines out.

I haven't seen a doctor in almost three years for my Crohn's so this is a major turning point. I wouldn't say it was in remission, but I was able to manage it. I'll report back what happens when I go the doctor on Friday. Since it's been so long and I live in another town, I may have to get referred by my PCP which means I may not get to see a GI til the following week. I'm out on the road now at work and don't have any appointments set up yet. I'm just determined to get in to see someone when I get back.
 

Cara Fusinato

Sarcastic Forum Comedian
Hang in there. Let us know what the Doc's say. It is wise to go when you feel this bad. Remember, you can get help from the prescription companies.
 
O

old hat

Guest
Sojourn said:
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12512028

I don't know if this is the same study when I researched it before. This study says it increases the risk for women but not for men, and I'm male, so I guess my theory could be wrong. Sometimes I feel like opening that appendix scar and ripping my intestines out.
I have to say that is not an approved modality for the treatment of Irritable Bowel Disease. Well it sort of is but...

Maybe you should consider having a surgeon do it and getting that anaesthe-thingy beforehand. It really helped me with the pain management part to be completely out during the gut digging out part.
 
I have to say that is not an approved modality for the treatment of Irritable Bowel Disease. Well it sort of is but...
Yeah, I really don't think I could bring myself to this, but who knows what people do in desperation.

Well, I got back a day early but still could not get into the GI until Friday. The nurse said I should consider going into the hospital. This is really what I was trying to avoid but I was in so much pain, and not eating anything, I broke down and went in.

My blood was okay, no increase in white blood cells, but the CT scan showed major inflammation in and around the lower right quadrant. They gave me prescriptions for Flagyl, Cipro, and Hydrocodone, until I get into to see the doc tomorrow. So with the Hydrocodone, at least now I have some relief from the pain, but not completely.
 
Top