Imodium-D for c.diff symptoms

[Ipontific8]

Hello everyone! I’m new to this group in terms of speaking up but I’ve been lurking in the background for close to 3 months. The support given here is great and appreciated. I’ve read may articles on c.diff both on this support website and anywhere else I can get my hands on. I ask for your patience as I relay my personal c.diff story and my experience with my GI doctor.

With no prior history, I began having rumblings and discomfort in my stomach while on vacation in Sept of this year. A couple of days later the D began and I self medicated with imodium d and pepto-bismol for the next 7 days thinking I could outlast the bug.

When I saw my primary care he tested me and in a few days came back positive for c.diff (no question that is what it was). I was taken off the two over-the-counter drugs and told to take 500mg of Flagyl 3 times a day for 14 days. Over the course of the next 10 days I lost 15 lbs!, bathroom trips were 20 per day. I returned to my PC who did a blood test and found my potassium level way down, prescribed potassium, another 10 days of Flagyl, and sent me off to see a GI doc immediately that afternoon.

4 days later I had a colonoscopy (just had one a year ago). 2 weeks later I was informed one very small benign polyp was found, I had minor irritation of the colon, and no other problems. The GI doctor said take up to 5 imodium a day if needed, eat anything you want and return in 4 weeks. I’ve was able to eat anything but continued to have a very active stomach after eating followed by on average 10 very loose BM’s. At my last appointment the Dr. said absolutely I did not have c.diff. I questioned why he felt so strong since I’ve not been tested for c.diff since initial contact with my PCM? He said that the colonoscopy didn’t support a finding of c.diff and retesting would just show positive because the toxins remain in the body and would show positive for c.diff. I told him that every stool I have is loose and his response was for me to take up to 8 imodium a day. Now I have to admit my comfort level is better with this routine: Wake up, take 2 imodium then after each movement take 1 imodium. In the evening take 1 imodium before bed. He also put me on cholestyramine 2 times a day to remove the toxins. Finally after 11 weeks I’ve regained 10 lbs of the 20 lbs that I’d lost.

Finally, if I stop the imodium the most difficult symptom returns full force. I’ve learned to scope out the location of the restroom as soon as I arrive at a new location and I also carry a couple of quarters for those places that have now turned to pay toilets.

I’m doing my best to live past this life annoyance. Monday I see the GI again. He tested for celiac disease and I will get the results from that. Frankly I feel like a test subject. My condition has not changed but I am gaining weight and feeling stronger. I noticed on the forums that no one else seems to be on this type of daily treatment (imodium and colestramine) and I’m questioning if my doctor is on the right path. Any comments?

Thank you

Bill

[amyc]

Bill, in my opinion, your GI doc is dead wrong. If every time you quit immodium you have diarrhea still, you have something still going on. I think you should return to your primary care doc and have another C diff test run. If you've been free of the infection for weeks, and have been off flagyl for weeks, the c diff test would be accurate and not just show residual toxin. After weeks and weeks of lots of loose BMs, any old toxin has washed out of you. If a c diff test comes up positive again, you've still got the buggers in there.

I'd ask to be sent to an infectious diseases specialist if your c diff test comes back positive again. This GI doc sounds kinda....different.

[amyc]

You could also have something like giardia or crypto going on, as those can cause diarrhea like you are describing, at least according to a friend of mine who got giardia and spent a couple of days having very, very frequent BMs before going to the doc. So I would again recommend a return to your primary doc, and to request a full stool sample screening to see what (if anything) they can find. I'm just not sure how you could consider having to take 8 immodiums a day "normal," but your current GI seems to do so?

[klt03301]

Hi Bill,

If every stool is loose and you're going up to 10xdaily w/o Immodium, something is wrong. This isn't normal, and I haven't heard other folks here say their GIs recommened they take up to 8 Immodium a day to control D, even when they're in recovery. I'm astonished, honestly. Very strange!!! IF you still have C.Diff, Immodium is an absolute no-no! Though you say you feel stronger and are gaining weight, I'm guessing it's because your're not losing it in the loo because of the Immodium. I'd call my PCP again, tell him what's going on, and what your GI has recommended. If it's not celiac, I'd want another C.Diff test, along with testing for other bacteria and parasites.

Please keep us informed as to what's going on. I wouldn't be satisfied with this GI doc's recomendations, at all!

Just had to mention that your username gave me a good chuckle. :-)

Karen

[gm37]

Bill,
I am sure sorry that you have having troubles with your health ....and your doctor's care. I have to agree with the others that Imodium is not a safe treatment for c-diff. I don't know about the other conditions. I, too, think you should double check with your first doctor and let him know what is going on.
When my D continued after treatment with Vanco, my GI tested for everthing and found that I had a bad case of Salmonella. Gross. At least it wasn't c-diff and he could treat me for the correct problem.
I hope you can get some answers and some help with this problem. Keep us posted.
Anne

[jjmom]

My GP also recommeded I take immodium. She advised me to take 2mg immodium each night. I didn't do it. I had some reservations myself and then I posted here and others thought it not such good advice. I did a little research and decided against it. I go to see my GI this week and I will ask him about it. My d is not as frequent as yours- only in the morning maybe 1 to 3 and not severe. However, I still feel rotten in the morning, lots of rumbling and nausea. I took one course of Flagyl 500 mg 3 times a day for 14 days. I now eat at least one plain yogurt a day, take one culturelle, occasionally I also take a acidopholous w/pectin. I try to eat normally, but I don't eat hardly any dairy and definitely not as much calories as I use to. I lost 15 lbs which is a lot as I was just at the right weight before I got c-diff. I am also going to ask my GI about pepto bismol because others here have mentioned that their dr.s advised to take it and it helped. As you have probably read in my posts, I have struggled with big anxiety and now some depression since this started, so I also take 1 to 2 lorazepam a day for that. I also do relaxation cd's and visualization to imagine my colon healing and every last c diff germ being washed from my body. We will get through this!! Every time someone tells me that it will eventually go away I feel just a little bit better- I hope you do too!

[Bobbie]

Almost all C. diff. experts agree Imodium is a "no no" for active C. diff. - it's OK for IBS. I agree with the others - get another opinion.

[Mommy23]

Gosh- I second everyone opinion. Imodium can be very dangerous as it keeps the toxins in. There are some competent doctors, but many who really don't understand the implications of their advice. Certainly look for a 2nd opinion.

[Ipontific8]

Thank you all for your support and quick replies. I go to the GI Dr. Tomorrow for an update and results for the celiac testing. I'll give an update on that later tomorrow. A second opinion and resets sounds reasonable to me after nearly 85 days of this not knowing if I'm still bugged or not:-). Going to enjoy this day regardless!

[Kathy George]

Bill,
In all honesty, it’s time to fire this GI and find one that is well-versed in the topic of C-Diff. Taking Immodium during active C-diff is a complete NO-NO!!!!! Immodium usage during active c-diff will have a negative impact on your overall health, as it is trapping the toxins. In fact, it has been know to caused a complete shut-down of the intestinal tract which can become fatal. In reality, your intestinal health is competing with the enemy (Imodium) which is equivalent to all out warfare.
I strongly suggest that you progressively proceed in seeking out a new GI in order to address and treat this beast. Reconsidering in the continuation of your c-diff medication therapy is suggested. Good luck to you!!!! I am not a doctor and the above comment is solely my opinion!!!!

[Ipontific8]

Thank you all for your conisderate responses. After reading many posts here I felt my GI doctor was barking up the wrong tree. Your reponses helped me to have the courage to confront him once again. This is an update from my visit with him 2 days ago. My lab test for celiac came back negative (I thought it would), it did show that I'm now mildly anemic (I have not been for that past 3 months since c.diff symptoms began. There has been little change in symptoms in the past 30 days to report (loose x 5 - 6 times avg per day, imodium 4 - 6 times per day). No normal stool in 3 months, gurgling and gas. Weight has come up 3 lbs in 4 weeks for a total gain of 10 lbs in 2 months. I'm still off normal weight by 10 lbs.
GI doctor wanted to continue imodium up to 8 per day and colestramine x 3.
I pressed him concerning his opinion that I do not have c.diff. I asked how he could tell that there was not an active infection if is refuses to test for it? He did not have an answer other than in his opinion a test would most likely show a false positive.

Ok bottom line: I pressed him for the next step in treatment and he said I could try vanco if I wanted but warned me it is very expensive. He wrote the perscription for a very low dose of 125mg x 4 per day and discontinued the colestramine (it absorbs toxins but also absorbs medications you take).

I would be telling you that I've started it but my pharmacy does not have it in that dose and has been trying to contact his office for the past 2 days to see if he will approve another doseage. It will be interesting to see what happens. I think he has a great scam going on and I'm ready to report him to my insurance. I have not fired him yet because he is the only one in town. My next option is 60 miles away.

So I'll let you know how it turns out after I start vanco. I would be nice to get this under control before Christmas.

[LoveMyBully]

Bill,

I have had C Diff for 3 months now. The first Dr. I was going to treated me for 10 days with flagyl. On day 23 of being off the med. I began having symptoms again. I was in the bathroom 20 times a day. My Dr. ordered a test and it came back neg. He had complete faith that the test was accurate and so decided not to continue to treat for C Diff. I pressed him for a second test and within two hours had a positive result. He prescribed me 10 more days of flagyl, which did nothing to help. I went back to him and he prescribed 7 more days of flagyl, but did agree to send me to an ID. I saw the ID five days later and he stopped the flagyl and put me on vanco. The point I am trying to make with all of this is that I was sick for almost 2 months, lost 24 lbs. and my Dr. would not listen to me. When I finally saw my current Dr. he had me feeling much better within 3 days. He listens to me and always has a plan in place to get me back on treatment as soon as possible in case of a recurrence. My first Dr. was 15 min. from my house and my current Dr. is 60 miles away but it is worth every extra mile to see him. You have been sick long enough and your health is suffering. I know it seems like a long drive, but I feel so much better being in competent hands. I would really encourage you to consider seeking out a Dr. that will take your health more seriously and try to get to the bottom of this once and for all. Good luck and feel better.

[AThurston]

Bill, I am a nurse, currently symptomatic c-diff. Never ever in my profession do we ever use imodium, any anti diarrhea can cause many complications. I am not a dr but have worked with pt's for years with diagnosis c- diff, active disease. My opinion same as others, get 2nd opinion, it is extremely helpful when GI &ID can work together, you're in my prayers .....

[getwellsoon]

Vanco in liquid form can be dosed out at 125 mg. You might have to go to a compounding pharmacy or specialty one but I was on that dosage. Also, Vanco is much cheaper in the liquid form. If they don't charge extra ask them to flavor it for you. I got grape and it wasn't so nasty but even if you don't get it flavored just put it in a teaspoon of something else. Hope this helps. Carol

[Kathy George]

Bill, 125mg x 4 per day is the normal prescribed dosage. Did you ask the pharmacy how long it would take for them to order it? If pharmacy is a chain store, I’m sure they can seek out this particular medication/dosage from another like pharmacy. When I was prescribed Vanco, the pharmacy that I frequent (CVS) did not have it in stock as well. However, they called other pharmacies in the area and was successful in obtaining this particular medication. Vanco is very expensive, and that is why many pharmacies don’t keep it in stock. They are well aware that most individuals are prescribed Flagyl as primary treatment. Many individuals take colesramine during active C-diff. As far as I know, it doesn’t confine the toxins as Immodium does. Did you ever check if GI truly has bona fide credentials/degree within the gastrointestinal field???. It just doesn’t seem like he has an ounce of knowledge regarding c-diff. I strongly suggest that you seek out the other GI who is 60 miles away. In the meantime, I would suggest that you make an appointment with your primary doctor and asked to be tested for C-Diff. Lastly, I would suggest that you speak with the doctor of your choice about Vanco tapering method. It truly has a high success rate. Long story short…….. You need to be your own advocate!!!!! Good luck to you!!!!