Thank you! It would be so amazing if by the end of April I was able to be C. diff free and also find out that I passed the bar exam. Then I could finally move on with my life! I will keep everyone posted on how my apt. with Dr. Shen goes on Tuesday.
So I had my meeting with Dr. Shen at the Cleveland Clinic last Tuesday. He was much more in favor of the procedure (as opposed to further antibiotic treatments) than I anticipated. He said that he had been seeing such good results that he wanted to go ahead and get my donor tested to get the ball rolling even though I still had a week left on my Vanco. He said that testing and screening your donor is really the hardest part but once that's done the procedure itself is super easy. Basically, the only reason we didn't do the procedure sooner was because I had to finish my antibiotic and test positive again for C. diff before insurance will cover the procedure. I have an appointment with my local GI doc tomorrow to fill him in on this and get the testing materials to get tested again. I finished the Vano on Sunday and by Monday my symptoms (stool smell, chills, abdominal pain) were all back, albeit not as severe, I'm pretty certain I still have it, although I'm not sure how long after you finish an antibiotic it will show up in the test again. I've read that it's possible to have a false negative test and still be infected by C. diff, so I'm not sure how long I should wait until I get tested again.
You could get tested again right away as long as you (and the insurance company) don't take a negative result very seriously. The point would be to find the (expected) positive result as early as possible, to get your treatment started promptly. If the result is negative, you could just repeat the test a week later.
Thanks Scott! That makes sense. If and when I get the fecal transplant procedure, I will definitely report back on my experience and if it was effective, which I am hoping it will be. I realize that no treatment is effective 100% of the time but the current studies are showing very high success rates, which is encouraging.
Good luck Kevin and I look forward to your report on the fecal transplant procedure and to hearing about you passing the Ohio bar exam!
Thank you! Hopefully I will have good news about both! If, God forbid, I have to retake the OH bar again at least my health will be under control this time so the experience will be far less painful (literally).
Good news. I am so happy you will not need to suffer from this much longer. I always heard that you needed to be off of antibiotics for at least 2 weeks before you could rely on the traditional stool test. But every time I go to Mayo's they order a stool test and since I'm on antibiotics around 90% of the time I didn't know why. I asked and think he said there is value to getting the testing done anyway. I know I haven't had it for several years so don't know how the testing might have improved or not. If you think it's back you are probably right. You know what the symptoms are - not the same as cuffitis and/or pouchitis, in my case anyway.
I also hope you don't need to take the bar exam again. Hopefully you will get the results back soon. I know I was on pins and needles waiting to hear about the CPA exam as when I took it you could only do so twice a year. They have since improved it in that regard. I guess things change every 30 years or so 
.
So I have tested negative for C. diff, although I am still feeling sick, so I have an appointment on Wed for a pouchoscopy/fecal transplant w Dr Shen at the Cleveland Clinic. Over the last few days I have been feeling pretty sick and last night I started having diarrhea every 20 minutes and feeling like I was going to vomit. Dr Shen didn't want me to be on any antibiotics before the fecal transplant so I'm not currently taking anything. I'm getting scared so I emailed his physician's assistant and she said to come in to the ER. I live in Dayton (4 hrs away), so I'm either going to have my mom drive me to the Cleveland Clinic (I haven't eaten anything, so I stopping having to go to the bathroom finally), or I'm going to admit myself to the hospital around here. I feel like I need someone to check me out and keep an eye on me, in case I get worse. I would prefer to go to Cleveland where Dr Shen and where they specialize in pouches, but I may be stuck going to the hospital around Dayton if I don't feel well enough to make it up. I definitely don't want to sit around and do nothing until Wed when I'm this sick.
You could be sick because you went off the antibiotics and you have untreated pouchitis that is and will continue to get worse, or you could have a false negative on the C.Diff test. I wonder if you should be having a fecal transplant in such condition- I guess that will be Dr. Shen's call. Good luck-
I just got back from the ER in Dayton. They gave me a couple of bags of IV fluid and some some anti nausea and pain medicine. They thought the same thing; that it could be either the C. diff (and a false negative test before) or it could be severe pouchitis, as both present with similar symptoms (or something else entirely). Because of this, the doctor prescribed me 500mg of flagyl 3x a day, since it can be used to treat both conditions and will not exaserbate potential C. diff like Cipro will. They gave me another C. diff test to take home and bring back (since I wasn't able to give them a stool sample).
I have a pouchoscopy with Dr. Shen on Wed at the Cleveland Clinic. I emailed him to tell him what's going on and he said that he needs to take a look in my pouch to see what's going on. He didn't mention the fecal transplant, so I'm not sure if we're still doing that; I emailed him back asking about it. I'm not sure I can have a fecal transplant if I'm on an antibiotic, although maybe I could get off of it 24hr before or something. I'm not sure on the protocol for that.
You did the right thing by going to your local ER. It sounds like you had a good doctor that knows about j-pouches! I understand that Dr. Shen might want them out of your system as they kill gut flora - good and bad. So they could potentially "kill" the new transplanted feces. When you are to the point you can't eat you need to do exactly what you did.
Hopefully Monday you will hear back from Dr. Shen and get the approval to go off of them 24 hour ahead of time. That's one of the reasons why I had such a hard time with my c.diff most all of 2012. We were visiting our daughter's family in New York state and I knew it was back so called my local GI's office. It was on a weekend so he went ahead and called me in a Flagyl script because I would need it for pouchitis if that was the problem. (I wasn't diagnosed with pouchitis until 2014.) I was on Flagyl so long there weren't times when I'd been totally off antibiotics the 14 days needed for a c.diff test.
I think it's better to have a pouchscopy when it's not so inflamed - but you do want for the Dr. to catch every possible thing that is wrong. This is me looking back as I had cuffitis and c.diff at the same time. My GI tested for the c.diff after he saw what my pouch looked like, during the pouchoscope. I have no idea how long I'd had it as I had been sick for months. This was one year after my take down.
I didn't realize Dr. Shen was ready to do a fecal transplant at that time. That part sounds really good to me. You don't have to find a donor and go through all the expense of testing their feces.
Give your mom a great big hug and make sure to keep telling her how much you love her. I'm a mom and know from past experiences with a very ill child. I'll never forget the night I spent in the CCU with him at age 15. The next morning he said "thanks for staying with me mom".
I did give my mom a big hug! Luckily, I started feeling better today and was able to eat without feeling sick. From Friday night until Sunday night, every time I ate or drank something I felt like I had to have a bowel movement really bad, like I couldn't hold it at all, even if it was hardly anything. I can normally hold it for as long as I need to so it almost felt like my pouch wasn't working right for some reason. Has anyone experienced this before? Today was the first day I could eat something and be OK for a while without immediately running to the bathroom, which is at least a sign that I'm feeling better.
I am looking forward to heading up the the Cleveland Clinic tomorrow with my dad. We're staying the night because my pouchoscopy/fecal transplant is at 1:00 tomorrow. My dad is the donor for it and we have to prepare and bring his fecal sample to my appointment within 4 hours (and we live 4 hours away), so staying up there ensured the sample would be fresh.
Considering I tested positive for C. diff 2 1/2 weeks ago, I would assume that is what has been bothering me. Although I tested negative in a follow-up test, the doctor told me that the test is pretty unreliable and false negatives are common. That would explain the constant diarrhea and nausea I had all night on Fri which made me go to the ER. Although pouchitis also gives flulike symptoms, it has never made me go to the bathroom 20 times in one night. Nevertheless, I'm hoping the scope can give us some answers because we really don't know at this point. My thoughts on the fecal transplant are that if it's C. diff, it will probably really help and if it's not C. diff at least we'll have more information about what works. I will keep you posted!
-Kevin
"Has anyone experienced this before?"
Yes, when pouchitis is not treated due to going off antibiotics, that is exactly what I experience within 6-8 days.
Thanks, that makes me feel better. Usually when I have pouchitis, I feel flulike and have to go more frequently, but I could usually still wait after eating something. With this, anything I ate or drank would send me to the bathroom. It's reassuring to hear that is a normal symptom. I unfortunately had to stop the flagyl I was taking because they like you to be off antibiotics for 2 days before a fecal transplant so they don't kill off the good bacteria you're getting. Today is my first day off antibiotics and I'm feeling better, so I'm just hoping I continue to feel better and I can stay off them until my appointment Wednesday.
C diff can be contagious, so be quite careful with hygiene, hand washing, and clean up. It wouldn't be funny at all if your donor developed C diff.
Thanks Scott,
I've been very careful about that. I spray the toilet with a bleach cleaner after each use and wash my hands very thoroughly. Me and my dad are even staying in different hotel rooms in Cleveland (mostly because he snores haha).
-Kevin
I had my pouchoscopy/fecal transplant with Dr. Shen at 1:00 at the Cleveland Clinic today. The procedure was pretty short and easy (I was under "twilight" sedation). I was told to hold in my donor stool as long as possible for it to be most effective, so I haven't eaten anything yet today out of fear that I would have to go the bathroom.
Dr. Shen said my pouch looked fine, which was really surprising considering I was in the ER on Sunday for severe nausea/diarrhea. I guess you can have pouchitis or C. diff symptoms without visible pouch inflammation.
I will keep you posted on how I feel after this. It's kind of hard to tell right now because I've only had fluids the last two days and usually I feel nauseous after eating when I'm sick. So far, so good though.
Just checking in to give an update. I'm definitely feeling better. Not back to normal by any means, but the frequency/nausea have gone away so I feel better. The only thing that remains is that although I'm going to the bathroom the normal amount of times for me (usually around 5x a day), my stool is still very watery. I have never had this problem in the past and never had to take Immodium or Lomotil so I will probably try taking that eventually. I didn't want to take it just yet, as I feel like I need to give my system time to settle down and get back to normal on its own. I haven't continued the VSL#3 packets because they were getting pretty expensive, but I ordered the capsules. They're half as strong, but they're much cheaper and you still get 250 billion a day. I figured I'd take that with Florastor every day and that would be a good maintenance combination.
If all you want to do is thicken your stool I'd suggest soluble fiber (e.g. Metamucil, Konsyl, Citrucel, Benefiber) rather than a bowel slower.
Last time I checked the VSL costs roughly the same amount per billion bacteria in all of its formulations (capsules, packets, and DS packets). The capsules enable you to take a smaller dose, though, and if that works for you it's the way to go.
Interesting, I never thought of a soluble fiber supplement. All my doctor ever told me to do was take Immodium. I will definitely get some of that tonight and see if it helps. Yea, the VSL is roughly the same price per billion, the capsules are just more more economical for me, since you can't really divide up a packet and paying around $90 a month (with shipping) for a 30-day supply of the packets was just too steep for me.
I take the fiber before meals, and have taken it twice a day for about 13 years. I think of it as glue. Lately I mix a half dose of Konsyl with a half dose of Metamucil (the Metamucil is sweeter than I like/need). The Konsyl has a challenging texture (it's been described as "sawdust" here), but it mixes best if shaken rather than stirred.
Good luck!
I use the Metamucil and it binds nicely. They have a powder which you can stir into water, and wafers which you can eat like cookies. I use both.
Thanks! I was either going to get Metamucil or Citrucel. They seem like they both do the same thing, but I guess it's trial and error to see what you prefer. I was going to get the powder, as opposed to the capsules, as I read that the powder has more fiber, and you have to take it with water anyway.
I'm surprised I've never tried these before. I don't know why I have watery stools now, but I'm not going all day so I'm just thankful for that. Maybe my system is still out of whack from all of the antibiotics and is still adjusting to the fecal transplant. I feel fine, it's just kind of concerning to still have this symptom when I never used to have it before I was sick.
I like the metamucil that is in gel caps better than stirring it up or eating it in wafers with calories. Walmart and Walgreens have generic equivalents of Metamucil in the caps. It tells you that 5 or 6 is equal to one dose. I don't need to use it anymore, but the last time I did I used 2-3 gel caps of it when eating 3 times a day, instead of all at one time. That's the way my surgeon said to use it. He wanted me to use them both. He use to write down how much metamucil and Imodium I should have every time I went in for post surgical check ups.
Some people don't mind drinking it. My daughter and husband both just chug it down with orange juice - but they have colons. They've had polyps removed and after living with all of my health problems they are making sure they don't follow in my footsteps! My daughter's PCP ordered a colonoscopy for her at age 24 because of my UC history and she had some blood in her stool. She had 4 polyps. She made my husband get one finally at age 53 or so and he had 9 polyps.
P.S.
It looks like the fecal transplant worked! The only thing I am wondering about is you are still having loose stools. How the hell do we know if they are caused by c.diff or something else when 5-6 trips a day is normal for j-pouchers?
That was what I was concerned about. I was hoping things would come back to "normal" afterward, and although most of my symptoms have gone away, it still kind of worries me that although my frequency has decreased, I still basically have diarrhea when I do go, which is not normal for me. To me, this is either 1) my bowels adjusting to everything I've been through (and the stress), 2) low-level C. diff which was never fully cleared up, or 3) something else like a mild case pouchitis. I guess I will just have to wait and see if things get better or worse. Unfortunately, I have been told that the C. diff test is pretty unreliable and can routinely test false negative, but if things were to get really bad again I suppose I would need to get re-tested. Hopefully, I continue to feel better though. It's just frustrating waiting.
For me, the tell-tale sign of an infection, whether C. diff or pouchitis, is a feverish, flu-like feeling and extreme fatigue. Luckily, I don't feel this way right now, but I will be paying close attention to how I'm feeling in case these symptoms start to creep back. I feel like because we get used to living with a certain amount of pain and discomfort on a daily basis, we can sometimes ignore more serious symptoms when they arise. That's basically the reason why I had let my C. diff go untreated for so long (aside from also not knowing about C. diff at the time).
Were you suffering severe pouchitis when they suggested a fecal tx? Just wondering? I've had chronic pouchitis since my jpouch surgery. All I've been on long term is Flagyl. If I go off, within the week I'm showing symptoms. I hate being on this drug long-term. Just wondering if this would be a possibility for me?
C.diff is a kind of pouchitis. Unfortunately anything causing inflation/problems in our pouch is classified as pouchitis. I didn't have a fecal transplant but as said before battled c.diff along with cuffitis for at least 8 months in 2012. I take s.boulardii which is a specific probiotic that is known to fight c.diff. Because I was on flagyl so often they assumed I had c.diff when the symptoms didn't go away or I felt it was back. That's when I found out the test is more effective when you haven't been on any antibiotics for 14 days. They still test me for c.diff every time I'm at Mayo's and have been on or am still on antibiotics. I don't know if there are different 2 or more different tests but doubt it.
I also had a bad case of cuffitis. They were both causing my pouch problems and I treated for them at the same time. Unfortunately I had a tough time with getting both of them settled down. As my cuffitis got better I could eventually tell when the c.diff was back - even though I wasn't tested for it every time I took flagyl. It's like if it looks like it and acts like it then it's time to treat it and no test is needed. Flagyl works on poucitis regardless of it's cause.
If I were you I'd call my doctor and probably go through another round of flagyl or other antibiotic that fights c.diff. BUT I don't know what they do after a fecal transplant. It might just take more time for it to work. Maybe you should double or triple up on your VSL#3 for a week or so. I know it's expensive but it could be what you need - more than an antibiotic which kills off good and bad bacteria at the same time.
As Scott says, I've pretty much do trial and error to figure out what will work best for me. It's like we are going after a moving target. I've finally started a diary telling what antibiotic and probiotics I am using plus I measure how well I am doing by tracking the doses of medications like Norco, Dycyclomine, my restless legs meds and my antidepressants etc. Antidepressants affect pouch function. The last one I was put on has helped it so much I no longer need Loperamide. I hope to figure out some pattern/mix that works the best. There are 8 strains of probiotics in VSL#3DS that are different than the s.bouardii I take too. I had been taking VSL#3Ds along with my antibiotics and when not taking antibiotics but for the time being am now trying just using the s.boulardii and no VSL#3DS. I'm telling you this because of the many variables I'm dealing with. Tracking your diet might help you too.
Good Luck!
Originally Posted by LaurieK714:
I hate being on this drug long-term. Just wondering if this would be a possibility for me?
I have taken antibiotics continuously for 20 years to treat pouchitis due to severe symptoms developing within 7-8 days if I go off. I rotate antibiotics. If you do not rotate antibiotics (and, importantly, different classes of antibiotics), a resistance to any one antibiotic will be developed. In addition antibiotics like xifaxin which are designed to stay in your gut and not be systemically absorbed can be taken to give your body a break from some of the other ones that are systemically absorbed, thus making you prone to yeast infections etc.
Laurie, I think anyone who can't get rid of pouchitis should be tested for C diff. Not so much because you hate the medications, but because the treatment will be much better if you know the source of the problem. There are multiple tests for C diff, which vary in accuracy, speed, and cost. I think you've now been off Flagyl for a little while, which could be a perfect opportunity to test for C diff (and get something positive out of those unpleasant symptoms). You might mention to your doctor that you've heard that the PCR test for C diff has fewer false negative results...
Thank you all for your answers. My very first question is what is VSL#3D' s? I have no idea what that is? I take regular over the counter Probiotics, as was suggested. I have only tried Cipro once years ago for a totally different issue. I had facial flushing, so they noted it as an allergy. But I was also listed allergic to Flagyl in the past, but we tried it again for the pouchitis. They've never told me or appeared to have a diagnosis for the pouchitis, only that I have it. I was off my Flagyl for 7 days, but broke down last night and took one. The pain was getting worse, and bathroom visits were starting to be more and more frequent. I think I'll call my Dr. today and see what they say. They seemed to be okay with the fact that I had the slight tingling in my feet. Like it was just going to be something I would have to deal with to feel good. I don't like damaging myself in order to just feel better. Being that I've had a Liver transplant that may play into what they want or can give me. Thanks for your help!
As TE Marie mentioned, C. diff and pouchitis can present with many of the same symptoms, which is difficult when you have had both to know which one it is. Although flagyl can be used to treat both, C. diff generally requires a higher dose, followed by a stronger antibiotic like Vancomycin if it doesn't work, followed by a fecal transplant if that doesn't work. Currently, the fecal transplant is only approved to treat C. diff, although if you see a pouch specialist like I did, they can sometimes code the procedure as a pouch scope and do the fecal transplant with it, to get around regulations normal patients face. It's all about finding a doctor who thinks outside the box and is trying new procedures. Although it is hypothesized that the fecal transplant can help with other conditions, there is no hard research proving this as far as I know, only anecdotal stories of patients other conditions improving as well. If you notice an odd smell to your bowel movements or your symptoms seem different than normal pouchitis, I wouldn't hesitate to get a C. diff test, especially if you had been on an antibiotic, as this is what causes C. diff to spread. VSL#3 is a very strong probiotic that can help with pouchitis and has been shown to reduce the recurrence of it when taken as a preventative measure. You can order it online.
By the way, taking 2 Citrucel tablets before eating solved my loose stool problem completely! Two tablets are only half as strong as the powder, too so I may just stick to those since they seem to do the trick.
Also, I found out today that I passed the Ohio bar exam! Hopefully having this burden off my shoulders will help my stress and recovery as well. I am still in shock and am enjoying every minute of today!
Congrats on passing!!! 
Hey Kevin-
Having passed 3 bar examinations myself, I know all too well the stress and pressure attendant to this process, and the euphoric relief one experiences at passing. Congratulations!!!!!!!!!!!! I hope you take your responsibilities as an officer of the court very seriously. I have practiced law for 23 years, and never had a grievance or a malpractice complaint filed against me by any client. It's been a great privilege and honor to be able to work in this profession and I welcome you aboard.
I have mentored several young attorneys in Connecticut, who were new to the bar. I would suggest that you join the local Young Lawyers Association where you will have the opportunity to network with fellow young attorneys and perhaps some who are a little bit more seasoned and experienced, who can guide you. I would also recommend attending alumni functions at your law school, where you will probably have the opportunity to meet more seasoned and experienced professionals and learn from them. I was very fortunate to have as my mentor an excellent insurance defense attorney who showed me everything there is to know about the ins and outs of this practice- how to handle different attorneys and Judges. Despite this, it took me many years to be good at it, to learn personalities and local rules and quirks in the local court system. I really took my lumps for 5 years or so when I first started practicing law. Not from a health standpoint, but from the standpoint of making mistakes and learning from them.
Law school does not teach you how to be a good attorney or the essentials: how to react in court, how to interact and communicate with different types of clients, how to behave in front of juries, how important body language and professionalism is, how to deal with unreasonable positions taken by adversaries. Only experience teaches you how to do this. For me, it was a very, very long process to obtain the necessary experience that enabled me to function at a high level in my profession. This was true even though I made law review in law school and was generally an academic overachiever. There is no substitute for experience. Welcome it, and try to get as much as possible, as quickly as possible. Do not be discouraged by screwups and setbacks. They will happen. If you take some lumps learn from them, and get better. You are a clean slate at this point- now it is time to fill that slate.
Good luck and best wishes in your career.
Thank you for the kind words and wisdom! I am looking forward to finally practicing law, as opposed to simply learning about it. I left a career in medical device sales to go to law school, and fortunately many of the skills I learned in that career have translated to and helped me in my legal career. I know it won't be easy at first, but I am just looking forward to starting my career and getting the experience. Because I have had my own share of personal struggles, I hope to bring a compassion and empathy to the profession that I feel is sometimes lacking.
Congratulations!!!!!!!!!!!!!!!!!!!!!!!!
Thank you so much! I couldn't be happier! This is a HUGE weight off of my shoulders! Considering how I was sick with C. diff while I was studying, this is such a huge accomplishment for me and a reminder to never give up when things seem too difficult!
Congratulations, Kevin. A big milestone indeed. It was over 30 years ago when my husband passed the California Bar, and it was a huge relief not to have to go through that again. I am sure it will much smoother sailing now without that stress overload!
Jan