C diff and constipation

[Selady]

Thank goodness for this forum! I am so grateful to have found this resource in my life right now.

I'm a 30 year old female and I've just come out of hospital with my third round of c diff in 2 months.

It all started when I took several different antibiotics over the summer to combat a terrible throat infection; the last drug being, of course, clindamycin. I first visited the ER in September with severe abdominal pain with mucus and bloody BMs. I tested positive for c diff and was put on 14 days of flagyl. A week after wrapping up the flagyl, I was back in the ER with the same symptoms again and was then given 14 days of Vanco. This past week I was hospitalized for 5 days with a positive c diff test yet again and am now about to start a 10 day round of Dificid, which I am trying to be hopeful about! My hospital stay was extremely complicated and I'll get it all out in my case history in the other section I saw :)

The strange thing about my c diff this whole time has been that I don't actually have diarrhea. The tip off to a relapse has always been a quick and loose BM then just straight to no stool for days on end. It's extremely painful and the cramping is just awful. I saw an amazing team this past week in the hospital and everyone has said I have atypical c diff symptoms that are a bit baffling. The fact that I get so constipated with the c diff has put me at risk for a toxic mega colon, which is my own personal nightmare at the moment. I feel like I'm consistently on high alert for mega colon symptoms.

My doctor said, "I can't believe I'm saying this to a c diff patient, but let's treat the constipation as normal" so I'm just starting restoralax.

Has anyone had symptoms like this that weren't a result of the Vanco?

Again, I am so grateful to have found this forum! The past week has just been horrendous and I really need a place to process and research. I'll definitely head over to case histories to get down everything that's happened these past few days. Thanks :)

[roy]

Anything is possible but if they stopped investigating when you tested positive for c.diff then I would be asking that they now investigate further.
Your history certainly points to c.diff but if it were me I would want other things ruled out, that would probably involve a colonoscopy.

Roy

[Selady]

Thanks for the quick reply, Roy!

While in the hospital, I had both the Infectious Disease team as well as the GI team working with me. I had a colonoscopy, endoscopy, immunology tests, and several X-rays. I was also a teaching patient and saw countless interns and residents. Like an episode of House. There isn't anything else wrong with me, just c diff that doesn't want to exit.

[Misscshell24]

I also had infrequent bms and constipation issues throughout out having c diff. I started with flagyl and couldn't tolerate the side effects, so switched to vanco. After two more positive tests, I took vanco again and then Dificid. I didn't have D until my last day of Dificid. That continued for over a week and now have constipation again. I've also had A LOT of pain, so am taking medications for that, so it's hard to know if my symptoms are from the medications, c diff, or its reprocussions. Are you taking any medications that might cause constipation? One thing I figured out was I was having too much iron in my diet, due to low hemoglobin. One thing I've noticed on here is c diff is like a snowflake, everyone is different. For me, I've noticed the pain is worse when I'm stopped up, so I take Miralax on days it's not too bad and Milk of magnesia on days it's worse (not every day, only occasionally). I'm not sure if it's good do this since I should be trying to rebuild good gut flora. I'm still new and trying to figure things out. Just thought sharing my experience might help. I am planning on retesting next week (14 days post Dificid). Hope the Dificid works for both of us!

[seekingcure]

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

Hi Selady,
Welcome to the group that no one wants to join. I can totally relate to your story. Although I never ended up in the hospital, my c-diff nightmare started with constipation, bloating, severe abdominal cramping and mucus-covered torturous stools. My story is long and complicated and I don't want to go into all of it here, but I have had IBS-D for years and years. Prior to my c-diff, I had taken a round of Demeclocycline (antibiotic), followed by a routine colonoscopy. After the colonoscopy, I got a severe vaginal bacterial infection (the first one I've ever had in 62 years). The doctor prescribed Cleocin (Clindamycin) cream. One day before I finished the ten day course, my usual diarrhea stopped and I had a 24 hour period of the worst cramping and bloating I had ever experienced. When I say the pain was severe, I mean it was severe. I'm used to having IBS episodes that have caused me to pass out before from the pain. It sounds like I'm exaggerating; but, believe me, I'm not. Anyway, I have taken probiotics for years so I kept taking those, stopped the Cleocin cream and curled up with my heating pad. In retrospect, I should have gone to the ER. I was in that much pain. Finally, after about 24 hours, I was able to have a small BM. For about the next week, I suffered with continued symptoms. Eventually, I returned to my normal for me (which has never been truly normal). A week or so later, I had a couple of episodes of totally watery D (which I usually didn't have) after drinking milk. I saw my doctor the next week for a routine check up on my iron deficiency, and mentioned these recent events to her. She suggested a c-diff test, which came back positive. I was treated with Flagyl, which didn't work, followed by Vanco and ended up being on Vanco for about six months, due to extenuating circumstances. I kept getting UTI's which required me to take antibiotics, so I kept having to start over on the Vanco taper/pulse that the GI had prescribed for me. The odd thing is that during the time that I was on Vanco, my BM's were the best they had been in years and I had no pain, which was miraculous for me. After I finished the Vanco, I felt pretty good for awhile, but then the IBS symptoms returned, maybe even worse than ever.

Sorry my post has been so long; but the bottom line is this: c-diff doesn't always present with diarrhea.

Misscshell24, I can also relate to what you said about the pain being worse when you are "stopped up." I'm exactly the same way. It's a balancing act to stem diarrhea enough to be able to go out of the house and going too far the other way and having severe pain from not going. All this goes along with my feeling that IBS is caused by some sort of bacterial imbalance. Wish the doctors could figure out what good bacteria I'm lacking or what bad bacteria I have and balance things out. I'm thinking a FMT might be worthwhile for my IBS; but, of course, it's not approved for IBS at this point. Someday soon, I hope it will be.

Praying the DIficid works for both of you.

[Selady]

Thank you so much for your replies. I've really appreciated the insight into other peoples stories as I don't know anyone else who has had c diff other than myself.

I am on my third day of the Dificid and it has me feeling pretty rotten. I'm hungry but also very nauseous. My pain is still very high so I'm not doing much around the house - but it is much better to be doing nothing at home than nothing in the hospital. I do worry though that I may have to go back maybe tomorrow because of the pain. Still watching for those toxic mega colon symptoms and so far no fever or flu symptoms. I still have only had one very very minimal BM since coming home from the hospital on Thursday. Which probably explains why the pain is increasing.

I am grateful though to be on Dificid as it was tricky to do. I live in a large city and it still wasn't available. My pharmacist had to special order from the wholesaler a few hours from here. There was also a big battle between my doctors, the hospital pharmacy, and my community pharmacy as the hospital pharmacy didn't want to release me with any due to the high cost. In the end I had two doses to tide me over until the shipment arrived and it all worked out.

I'm starting in bio-k tomorrow and am really hopeful it will be a power combo combined with Dificid.

[Bobbie]

Selady,
Welcome to the site. Has any of your doctors ever suggested eating more fiber to you to combat the constipation? Fiber is supposed to "feed" good bacteria. (I.e. fresh fruit and veggies, beans & other legumes, whole wheat).There are also fiber supplements like Metamucil, Citracel, and Benefiber. I use Benefiber.

It is rare to have C. diff. with constipation instead of diarrhea but several posters have displayed the same symptoms. (You might use "search" to see if you can find others and contact them.) It is common to have IBS (with constipation, diarrhea, or a combination) after a bout of C. diff. Exercise and drinking lots of water can help.

I am not in the medical field so please check these suggestions with your doctor before you use any of them.

Best to you and keep us posted.

[Bobbie]

Misscshell24 ,
You might try the same advice I gave Selady but check it out with your doctor first. Constant use of laxatives can cause dependence on them; they don't encourage good bacteria growth. Pain meds. can cause constipation. Drink plenty of water and try to exercise - start slowly and "work up."

Keep us posted.

[Misscshell24]

Thanks, Bobbie. I go for a walk twice a day; exercise helps. I also use a heat pad. Unfortunately, the pain is too severe for OTC pain meds, but I have weaned down to one prescription pill a day, broken into quarters, and taken as needed. I tried a fiber supplement and it stopped me up and made the pain worse. I agree with the laxatives and it makes sense that they wouldn't promote good bacteria growth. I've only used a laxative maybe once every week or two over the last couple months when the pain from constipation and gas has been really bad and used a fraction of the recommended dose to help get things moving without totally clearing me out. I'm trying to keep it simple with everything and let my body do what it needs to heal.

[beth22]

When I was first diagnosed with c diff, I too, was C, but was passing a lot of M and then some B. But, I did not have the typical D either. Later on, with relapses, I did sometimes.

[mirah]

Hi All

I have similar symptoms to you in this post but for me it seems I either have constipation or d depending on what I eat.
Right now I feel like constipation is better than d cause it looks and feels less scary. Most doctors think that c diff only presents with d so it's reassuring to see that others have the same issue as I do. My doctor has been recommending the BRAT diet. It is keeping me constipated though so I'm not sure what to do. I am 14 days post flagyl and retesting the stool. Waiting for results now.

Thanks for this wonderful site,
Mirah

[Lovelove]

Hi I am new to this site, and cdiffe. No one can understand the pain this causes, the doctors dont know anything about treating this horrible thing. I am know going to my 5th Dr on thursday, he is supposed to be a specialist in Beverly hills. I was on Vanco 10 days 500 mg every 6 hours ,I knew I was still positive after finishing even though tests said negative, finally got tested again of course positive, now on vanco again this time 30 days. My issue is that I am constipated , always have been since my hysterectomy , . So I take a natural pill called colon max that has helped me have a BM once a day. Now that I have cdiffe I can take triple my dose and still no bowel movement, I too am afraid of Mega colon. Drs say try not to take your colon max, but if you dont go bm for two days then take it. These drs so far that I have found are uneducated about this super bug. Its so scary and frustrating. Does anyone know of a Dr in LA California that can help me cure myself. I got this when I had a sinus infection and the er in my town gave me antibiotics iv form and oral for 9 days and bam cdiffe. Does anyone out there know who I can see. Thank you all , and I hope all of you get better,

[amyc]

I would try to get in with the Infectious diseases group at UCLA or USC med school. i'm shocked that 500 mg vanco 4 times a day didn't work, and further confused that they put you on 30 days of vanco again instead of trying Dificid. Do your symptoms go away while you are on vanco?

[roy]

Probably more importantly why did a Dr test for c.diff in the first place!
Do you have any symptoms that say you have c.diff as a disease?
If your trying to chase a test result that says it's "cured" then that's probably never going to happen.

[Lovelove]

HI thank you for your responses, I had typical cdiffe pain mucous blood in stool , I knew something was wrong so got tested first test was positive, so went on the Vanco 10 day course never tappered off just stopped after 10 days, yes while on vanco my terrible stomach pain went away put Bm still was wierd mucous lots of mucous, but again couldnt go to the bathroom unless I took my colon max. After 10 days of vanco , I got tested to early and was negative, but after i stopped vanco I started feeling bad again and new I didnt get rid of the cdiffe, the Drs were so aweful and tested me to soon then said I was negative when that actual sample was never even tested, so I waited 2 more weeks in pain still, got retested it was positive. One dr said well if you dont have the runs you dont have cdiffe, but my test was positive, I also caught Bacterial Vaginosis too, so kinda a double whammy. Today the gut pain is better but I cannot have a BM, hoping tomorrow morning I will, I took 5 colon max pills still nothing.....I have another question regarding being contagious, I hear different things, can I get my nails done , can I go grocery shopping for the elderly can I sit in a room were others sit and not create contagious spores, can my boyfriend just sit in bed with me to watch a movie?? I am so confused about this cdiffe in so many ways, and drs give me all different opinions . I have been to usc and ucla not infectious diseases but GI's, I will look into going to contagious disease drs, thank you for your replies, It means the world to me , thank you so very very much