Introduction:
I was diagnosed with Ulcerative Colitis 20 years ago and the symptoms have progressively gotten worse to the point that I am now considering surgery. I have a colonoscopy or flex sigmoid about once a year. I have recently found the Specific Carbohydrate Diet and I am starting that now.
Some more about me:
I am a 40 year old father of three amazing kids (two adopted) and I work for an organization helping orphans and school children in Haiti. Despite having UC, I love to play golf and travel. I’m from VA but have lived in SC for eight years. My friends and family would say that I love life and adventure, but I always have to run to the bathroom…
Current Colitis Symptoms:
Bleeding, severe cramping, CDiff, no bowel control, joint pain, loss of energy.
CDIFF Nightmare
Hey y’all! I’m not a blogger and really don’t like to complain but I wanted to offer some of my story in hopes that it helps encourage some of you who may be suffering with the embarrassing symptoms of UC. First of all, PLEASE ask your doctor about CDiff and make sure your doctor does lab work when you are having a flare. I JUST learned about CDiff and wonder how long I have been infected and am getting a new doctor as a result. Here’s my story:
So I’m sitting in the waiting room before a flex sigmoid and I’m grumpy and tired because it’s 1:30 pm and I haven’t had anything to eat or drink. They call my name and at the same time my phone rings. It’s the Mayo Clinic telling me that they just got my lab results and I have an infection called CDiff (clostridium difficile). My local doctor DID NOT catch the CDiff, but I had just started talking to the Mayo Clinic and they did the lab work and advised me NOT to have the flex sigmoid until after clearing the infection. I had never heard of CDiff before and didn’t think it was a big deal. But my girlfriend works in health care and FREAKED OUT because CDiff is very dangerous, contagious, and difficult to get rid of. The ONLY thing that kills it outside of your body is BLEACH. So my doctor didn’t do the procedure and started me on the antibiotic Flagyl. I have been tired and achy for two weeks, but the infection is starting to clear. I still have another month to go on Flagyl to make sure the CDiff is gone.
For the last four months, I have been crapping in my pants uncontrollably. It’s been so embarrassing and I’ve been afraid to leave the house. Almost every morning when I take my kids to school I have to come home and get cleaned up. It only takes 20 minutes to drop off my kids, but I still can’t control my bowel movements. My doctor said it was the UC and I need to have my colon removed. But now I realize that it was the CDIFF and NOT the UC that was making things so bad for me.
The worst incident was playing golf with my best friend when he came to town. On the 14th green, I started cramping. Fortunately, there was a bathroom nearby. I ran to the bathroom only to find BOTH the men’s and women’s rooms LOCKED. By this time, I was standing at the bathroom door totally crapping in my pants and having major diarrhea. I had to tell my best friend to go to the 15th tee while I tried to figure out what to do. I had a roll of toilet paper in my golf bag, so I grabbed that and literally had to stand outside and take my pants off to get cleaned up. It was AWFUL. My friend was understanding and we made it through the last 4 holes but I made sure he didn’t touch me because I didn’t want him to get CDiff too.
I know this is gross, but I just wanted to encourage you to check for CDiff before having surgery or doing anything drastic. Also, if you find yourself in embarrassing and yucky situations — please know that you are not alone and have my support!
Hang in there!
Colitis Medications:
I have taken Imuran and Humira in the past but could not tolerate the side affects. Remicade was the BEST but also produced nasty side affects. Mesalamine does nothing for me. I can’t take sulfa drugs. Currently trying the manage my UC with diet, probiotics, and occasional steroids to control flares.
written by Louis from SC
I was diagnosed with UC 20 years ago and the symptoms have progressively gotten worse to the point that I am now considering surgery. I have a colonoscopy or flex sigmoid about once a year. I have recently found the Specific Carbohydrate Diet and I am starting that now.
Dude, I’ve buried more underpants around the the Las Vegas Valley that I’ve lost count. At the worst of times when I know I had to go out I wasn’t above wearing one of my kids diapers as a pad. They’ve saved me from embarrassment more times than I can count. At least until I could find a bathroom. I feel for you and I hope it gets better. I’m in clinical remission with Imuran and Remicade. *knock wood*
I have had UC and IBS for about 22 years, your story is similar to mine. I always get sick and get gastroenteritis, i have been tested for CDiff and havent had it as of yet, at least i dont think so. I was on flagyl before when i had the gastroenteritis, and that was hell, all my joints in my body went so painful. I had to go back on prednisone. I hate those steroids. I bloat up so fast from them. Anyways, i definately make sure im good before colonoscopies and any scopes.. I am at the point of deciding to do surgery or not. I know this is an imbarrassing disease but i am not sure what would be better, a colostomy bag or this… its a very dificut decision. I am on Remicade which is a miracle formy pain and joints, but does not completely work for my UC, it calms it down , but doesnt totally get the UC to go in remission. I havent been in remission for about 4 years now, and im exhausted. I feel so debilitated with this i really dont know what else to do. I hope all works out for you. Good luck.
Hi April
What’s your remicade frequency? I’ve been on it for 9 years and 8 weeks (5mg/kg standard does) just would not work…I ended up switching to 5 weeks which seems to be my prime spot (only took us 4 years to get there as you have to give remicade sometime).
Hey April, if you decide to do the surgery, just make sure you get a great surgeon — even if you have to travel. It’s all scary to think about. Hang in there!
11 years (9 symptom free) later it hard to imagine how when I ever got through the urgency especially as it was during middle school/high school! I did have a bad episode about 2 years ago when I first went to the UK to study abroad, I actually caught dysentery since their water has different “bugs” than ours and being on remicade made me more susceptible to them. I was on a big coach bus and thought I was going to lose it and my mind, we finally stopped at a tiny gas station and my amazing friends figured out a way to get me to the front of the line, thank god!It luckily cleared up on its own within a week, but that was miserable. Not the best way to spend your first week abroad!
louis, i had the same experience as you!!
i am just recovering from c diff and finished my vancomycin a week ago. it started with severe abdominal distention and gas. just way different from what my UC flares do. i then started getting lots of bloody diarrhea and 103F fevers. i tried to put up with it at home since i had just started humira when the symptoms came about. i ended up going to the ER after 5 days of the fever and pain. i demanded stool tests but the doctors kept saying it was just my UC flare. they did ct scans with that barium stuff and multiple x rays looking for god knows what. anyway, they eventually did stool tests but it took a while to get the results. in the mean time, the head GI doctor wanted to send me HOME. my mom and i were like “are you out of your mind?” he’s like “i can give you some iv steroids or we can cut your colon out. your choice.” i told him i didn’t think this was my UC and that i felt it was bacterial. he was sticking to his guns though and told the nurse to discharge me. literally, five minutes later my stool tests came back positive for c diff.
i wanted to shout in the doctor’s face saying i told you so, a-hole. some doctors are just so obsessed with themselves and their ego. it’s really annoying and he could’ve killed me by his negligence. i had never been sicker in my life. luckily i got blood while i was in there since i was losing so much in the toilet.
i hope to do fecal transplant if the c diff comes back. obviously, the doctors aren’t on board so i’m just gonna do it at home- probably ask my grandma.
Wow!! That’s intense! CDiff is getting worse around the country, don’t know why some doctors are ignoring it…maybe because its typically found in nursing homes and hospitals, so they didn’t think we would have it. I’ve learned that having a good doctor makes all the difference in the world — even if you have to travel to get to a good one. My new doctor wants me to have three negative CDiff tests to make sure it’s gone!! Hang in there!!
Hi Louis,
Have you tried the Fecal Transplant yet for c. diff. One of my friends fathers recently died of c. diff after it came back from 5 separate rounds of anti-biotics. The last time without warning. I would go with that, it’s safe, well documented as being highly effective and was featured in hundreds of articles in January including The New York Times
Hi Louis,
How did the your last test come out? I can’t believe you have to be on the antibiotic for a month. My doctor told me 10- 14 days and I am in day 7 and so sick to my stomach. I hope I don’t have to be on it for a month.
I feel your pain about taking your kids to school. Have been there myself and school is only 10 mins from my house. I put a beach towel on my car seat. I hope to God I never get this c-diff again.
Hey Barb– I was on Flagyl for three weeks and it made me feel terrible!! No energy! It wasn’t working so then I was on Vancomyacin for 10 days. Going to lab this week to get tested to see if CDiff is gone…doctor wants three negatives to be sure. Next med would be Difficid…
flagyl was WAY too weak for me, too. the hospital doctors had me on it for two days and i was still bleeding heavily and going to the bathroom 25x a day with such horrible pain. the vanco kicked in right away and brought me down to 3-6x a day. that’s where i’m at now.
Hi Joanne,
I too am dealing with c-diff I am in day 7 of the antibiotics. This is horrible and would not wish this on anyone.
How do you do the fecal transplant at home? I am looking into this and was going to ask my doctor about it.
hey barb. i totally agree. the antibiotics are rough. my GI doctor wants me to stay on them for 6 months. the doctors i saw at the hospital though wanted me on a 10-14 day course. i did 14 days. i think 6 months is overkill and would do more harm than good, especially for my UC.
as for fecal transplant, i did it last year for my UC. it didn’t do anything (made me a lot worse) but i didn’t have c diff back then. i’d be willing to use a different donor this time to try to get rid of c diff. all i did was blend my donor’s stool in the blender with some saline solution (just boiled water with salt). i poured the solution in a FLEET enema bottle after i strained it to get any clumps out. then i just laid down on the floor and did the enema. i tried to hold it in for as long as possible. i did 8 FT total but i think for c diff you don’t need to do that many.
Omg, Joanna I would not take them for that long either. I don’t even know if I can last the 14 days. I am in day 8 of the Flagyl and if it wasn’t for Bev giving me advise on the probiotics and the L-glutamine I don’t know where I would be. These two things have helped with the bad stomach pains (feeling like someone dumped battery acid in my stomach) I still have the direahea but it has slowed down. I am hoping by day 10 there will be none. I hope to God that I never get this c-diff again.
Heather ~ I can’t believe you have gotten this 3x. I would have jumped off the bridge. I hope your doctor moves things along with you and gets you feeling better soon. Please let us know how the transplant goes.
Best of luck and wishes!
Heather,
So even though the test shows c. diff you aren’t having any GI symptoms right now? I’ve read that c. diff bacteria is often found in people who have not had c. diff Colitis or other GI problems. This could be because the presence of clostridium Difficile bacteria itself is not the problem per se. Rather the problem is an overgrowth of c. diff bacteria and the absence of competing bacteria that are stronger and more dominant that keep it from getting out of control.
For c. diff Colitis it usually only takes about 3-5 daily enemas at home by yourself. I have also read published accounts of doing it just once with a colonoscope as being enough. The success rate is very high more than 90% in most reports, even 100% in some studies including “Success of Self-Administered Home Fecal Transplantation for Chronic Clostridium difficile Infection” (Silverman et al, Clinical Gastroenterology and Hepatology 2010;8:471–473.)
I used fecal transplants at home to effectively cure myself of Ulcerative Colitis. I did it for 5 weeks in combination with drugs to limit inflammation and frequency of bowel movements, a year and a half later I am completely healthy, not taking any drugs or any special diet. However based on my experience and those of others I have spoken with who have successfully done it for Ulcerative Colitis, Prednisone and immodium taken every 4 hours and / or longer-acting anti-spasmodic drugs are necessary in addition to continuing enemas for at least a month up to several months. It also is a roller coaster with UC, it gets better then gets worse and worse and then can very suddenly get better. Then over the next few months it keeps cycling but each downward cycle or flare is not as bad as the one before it, until any flare-like cycles are completely gone. It has now been about 18 months and I am completely healthy with no medications or restrictive diet to maintain that state.
The process of Fecal Transplant is pretty simple:
– Get the worst of the flare under control as much as possible using anti-biotics, Prednisone and mesalamine. This is key to the extent that you can help limit bowel movements and help create favorable conditions for the new bacteria to establish themselves. If you have previously used an anti-biotic drug the bacteria might have developed at least some degree of resistance to that drug so you might get better results using an anti-biotic you have not used before or a combination of anti-biotics.
– Clear the colon of bulky poop if any using laxatives like you would for a colonoscopy prep. If you have had frequent watery stool this might be un-necessary and I did not do this myself.
– An hour before the enema take Immodium as an anti-spasmodic which will help you retain the enema longer.
– Mix the donor’s poop in a blender with saline (distilled water mixed with salt packets for saline nasal rinse)
– Strain the mixture as needed to get out large pieces that can clog the enema.
– Administer as an enema using an enema bag or rectal syringe. I used a rectal syringe, $10 at CVS because it was easier.
– Move your body around as necessary to get the mixture as far up there as possible.
– Continue to limit bowel movements as much as possible to help the new bacteria take over and work their way upstream through the colon.
For c. diff you should start significant improvement or remission within 48 to 72 hours.
I have had C diff 2x in the last year and I just went in for another test this morning fearing it came back again. I am on Remicade and was finally about 85% better and prednisone free for 2 months and BAM I think its back. They said this is it if its here for a 3rd time I have to do the fecal transplant. Crazy I dont take antibiotics and I take probiotics and I am healthy its just that C diff loves me! Horrible to deal with I hate it. I am thankful as well for my Mayo Clinic and the doctors there. I hope to be C diff free and find out if Remicade can get me into full remission. I do wonder because I think I had C diff for a LONG time before it got caught if that makes it hang around longer…
Good luck to everyone I know none of us want to resort to surgery hopefully we can all find out happy healthy place.
Heather
How long do you think you had the c-diff? If you did have it for a long time were you going to the bathroom all that time?
I am dealing with it now. Day 10 of the flagyl. Did the flagyl work for you? This is the worst. I hope to GOD I never ever get again.
you might need to try vancomycin if the flagyl isn’t helping. vanco helped me IMMEDIATELY. i was suffering on flagyl for a few days before the docs gave me vanco with the flagyl. it was a huge turnaround for me.
Wow…what a story!
I recommend what Micheal said…the fecal transplants. I still don’t understand treating c-diff with antibiotics…but I guess that’s still how you kill an infection these days…it’s just that antibiotics are so counter productive for UC itself…sheesh!
I am so lucky to have not had c-diff. it is dangerous for sure! People can and do die from that infection!
Thank you for the post. I feel so fortunate that I have not had to tackle that particular obstacle yet in my UC journey…hopefully I won’t ever have to…
Cheers, and all the best,
Bev
:)
Hey Bev,
Yes people can and do die of this infection so people should not mess around with this. Given the low success rate of anti-biotics in preventing the re-occurrence of c. diff, and the potentially life-threatening impacts I think FT should be a first-line treatment instead of a last resort.
The father of a good friend of mine died of c. diff related complications two weeks ago. This seemed kind of frustrating to me because this friend of mine had actually been around my house once or twice while I was hanging out retaining the enemas. She self-diagnosed the condition after talking to me about her father’s symptoms and then asked the doctor about the FT for her father and handed him some articles I sent her. I told her if their doctor wouldn’t do it and they couldn’t get in to see the one who I have spoken to who does them that she should just check him out of the nursing home for a few days and do it herself. But her father didn’t want to do anything unless the doctor told him too.
After the 4th round of anti-biotics in about a year and a half failed I warned her more with more urgency they needed to get this taken care of before it killed him, then a month later it did when round 5 of Vancomycin did not work. Don’t wait for round 4 or 5 of anti-biotics to fail.
Hi Michael…I read about this in one of your other posts…how terribly tragic, unnessesary and needless that this happened to your friend’s father. I do not understand why the FTs are not used as the first defense, as soon as c-diff is detected.
C-diff is what I saw in the news a couple weeks back, as being treated with these new manmade FTs. Yes, man made but not ‘human’ made…no smell or donor necessary…just the exact same ‘ingredients’ as good old poop! Needless to say, they cure c-diff…no antibiotics at all…just good gut bacteria (probiotics). Nobody should be dying from c-diff any more at all.
Why does it always take so long…
:)
Is this man made “poop” being used in the US?
I have no idea…but it would happen there before here in Canada.
Does anyone know if these synthetic FTs are even available yet?
Too many UC patients remain undiagnosed while suffering from C. Diff. When I was diagnosed with UC two years ago, my stool test for C. Diff. was rejected at the lab because the sample wasn’t ‘liquid’ enough. I was sick at the time so didn’t request a follow-up test. Apparently the M.D.s overseeing my health didn’t care because they never requested a new test.
After nearly two years of rectal pain, bleeding, post stool mucus, loose stools, and general malaise, I finally listened to my wife and asked my M.D. for a C. Diff. test. The results of the test were positive (naturally) and I was put on a course of Vancomycin. After a week of antibiotics, my condition improved dramatically. I now know why I could never find relief using Rowasa and other medications. I can only speculate why my specialist ignored the data I shared with her that showed no improvement following treatment. Maybe she only wanted vague anecdotal information so she could push the preferred immunosuppressant therapy. No thanks.
My retest for C. Diff was negative. Now, a few weeks following the course of antibiotics, I am seeing a bit more blood and mucus. This is something I have to work through and evaluate, but I am a bit wiser than before.
The lesson learned here is we have to be our own advocates and educate ourselves. We also need to help others realize they can’t blindly trust establishment experts to look after them. This is a partnership in health or it is nothing. Thanks for sharing your story.
Bravo!
Love what you say about the specialist having her own agenda. I’ve been there. Mine almost squirms when I refuse the immune suppressors, steroids, and any drugs at all any more. When I tell her of my success with probiotics and L-glutamine, she does not want to hear or accept it…it’s pathetic, really, how transparent she can be…
The main lesson is…YES, we must be our own health advocates!! No one else really gives a s***, and really, why would we even expect them to? Doctors have many patients…we are usually just a ‘job’ or a number…reality…
:)
Hey! I was diagnosed with UC nearly 13 years ago. It has progressed to pan colitis. The most current episodes may have appeared as a flare but I’m convinced its down to bacterial infection such as C-Dif. I was tested back in April of this year but test came back negative. I was put on the usual steroids. Things seemed to calm down, but only few months after stopping steroids I’m back on them. Dropping off the lovely samples to the lab this morning. I’m convinced its infection due to the way I feel. Nauseous all the Tim’s, especially if I try to eat/drink. Dizzy, achy and tired. I also have the most disgusting smelling gas and BMs, honestly it’s so bad I don’t want to be in the bathroom!
I understand these test are not always accurate and results are therefore not going to be conclusive. I’m going to speak with my GI hopefully today. I’m thinking it maybe better to start me on antibiotics anyway. I’m also starting on the SCD! As soon as I can stomach anything more than homemade chicken broth that is :)
I think you are right. It sounds like c-diff. We have to be our own advocates. Don’t give up either keep getting tested. Hopefully once the put you on the antibiotics you will not have a flare with the UC. Good luck and hope you feel better soon.
My second test for C Diff came back negative. But I understand they’re not very accurate testing methods here in Canada. I also think I had severe reaction to Asacol.
Last week my GI simply increased the dose of prednisone. Guess what! Still have all symptoms! Bleeding, watery D, gas, bloating, nausea and fever. Not to mention that I’ve continued to loose weight even though on steroids!!!
Calling my GI doc again tomorrow to see if I can convince her it’s not a UC flare!!!! Meantime what damage is being done to my body! I don’t want to have surgery all because people won’t listen to me!!!!!
Scared and frustrated!!!
I know your pain my friend. I have been blasted with the c. diff bacteria twice now in the past year and have had my world completely rocked by this terrible infection. I am currently out of work for the second time in the past year. I have been placed on 2 different anti-biotics as well as a steroid dosage each day.
C. Diff is a crazy beast that can stay hidden in your gut over time and for some unknown reason lifts it’s ugly head and creates chaos in the lives of it’s victims.
There are several natural remedies to prevent C. Diff , my big question is do they really work? I was on the SCD and will be returning back to it as soon as I get my weight back up. I am currently on a low fiber low res as my gut heals from my current bout with C. Diff and UC.
Best of luck to you sir. I will be keeping you in my prayers and hope you can get this C. Diff under wraps, it can be quite a process but there is hope in your walk. Keep your head up and don’t let the beast get the best of you!
After reading all these post I’m so lost. I really want to cry. I hate our medical system. Such a joke. My four year old special needs son had what they called toddler diarrhea for two years. Had high liver enzymes. Drs wanted to test me and my husband for matches for his liver. We went to Italy with my sons results and looked for more answers. After five minutes the dr said looks like crohns have the US draw scoped him. I said no they won’t. He said I’d insist. We got home he started bleeding they had to scope him. The results were horrible. Ulcers from the colon to the small. They did a genetic test which showed server possibility for UC. He is always on meds for constant infections they wanted him permentaly on meds. We said no way. He tends to stop eating when he has a flair up or so we thought but now we are wondering if this hasn’t been c diff this whole time killing him. We took a sample to cleveland clinic. Lab rejected it because it was formed. I went to Akron and their lab tested it positive for c diff. Three times now in just two months. He will now be on vancomycin for the next TWO months straight. Now my two year old has the same stool same color same smell same habits. And they are telling me toddler diarrhea. I’m really ready to go crazy with these stupid narrow minded asshole des who can only think inside a box. I just got c diff. I know I have it. No one will test me. But I can’t eat severe stomach pain horrible headache fever of 103 and it’s been two weeks. Going to another hospital system because I was sent home from the er twice this week after they rejected to test my stool and other labs came back ok. In spite of the fact they said I had blood and bile in my urine. Still sent me home. I feel like I am going to die and it I don’t find an intelligent dr soon I probably will die at 40. I’m down to 109 lbs. and only getting worse.
If anyone knows of a dr that can help my four yr old lease send info my way.
Hi Angela,
So sorry to hear that your son is dealing with this….I am 45 and dealt with c-diff two years ago. I was hospitalized 3 times due to dehydration. All I can tell you from my experience is that the vancomycin works the best. The Flagyl made me so sick to my stomach and really wasn’t working. Since I had c-diff my UC flaired up so with that came steriods and ascal which did I help took a month to recover from all of this. C-Diff is very contagious sounds like your 2nd son might have it also. I would go and get him tested. Best bet clean your toilet with bleach and kitchen counters. Go to your family doctor and have him write a script out to go to a testing center. Good luck and I will be praying for you and your family.
Barb
During my last hospital stay I developed c diff. I was admitted with bronchitis and cellulitis, as they were trying to get rid of those I got pneumonia and then with the antibiotic cocktail I got c diff. C diff on its own is horrible, but combine it with the other 3 and my doctors thought I was going to die. Not knowing what dying feels like I just thought I was real sick and managed to get to the bathroom every thirty minutes or so to either get rid of gas or explosive diarrhea. It has now been over 3 months and instead of having brick like stools (I take hydrocodone and morphine sulfate for lifelong chronic back pain) my bm’s are very soft and ropelike. It’s not diarrhea anymore thank god, but its not right either. I also started feeling nausea and dizziness frequently in the last week. Nothing ever happens, but it does make me pause and get me to control myself for a minute.the other infections are gone, no more bronchitis, pneumonia or cellulitis but I have a feeling I still have maybe a mild case of cdiff still going on. My question is since I don’t have diarrhea can it still be c diff? I remember very well what full blown c diff felt like and this isn’t it.