3rd positive test... Starting Dificid.

[Misscshell24]

I finished my second course of Vanco on 9/5/14. On 9/24 I started feeling dizzy, lightheaded, low blood pressure, a couple loose bms a day, and continued pain. I've had several abdominal surgeries since July and the pain has never fully went away, even though it should have by now. So, I started seeing a GI specialist. He ordered an upper GI barium series and some labs, including another c diff test, which I just found out today that it came back positive, again. I'm am starting a 10 day 2xs a day treatment of Dificid.

I have an appointment with the GI next week to go over the barium results. I am a vegetarian on a very limited diet of only banana, gluten free oatmeal, plain white rice, plain baked potato, and rice milk. I use a heat pad for the pain and take as small amount of pain medicine that I can tolerate. Also, I ordered and just started taking VSL #3, prior to that I was taking another daily probiotic.

Any advice, experience, input, etc would be greatly appreciated as I have been "sick" with one thing or another for 6 months now. I am a 35 yr old single mom of a 10 year old boy and would love to have my life back.

[seekingcure]

I'm sorry to hear you are still suffering so. It's good that you are under the care of a GI now and he's running some tests. Hopefully, the Dificid will do the trick. It has worked for several on site when Flagyl and/or Vanco had failed.

VSL-3 is one of the probiotics that I take. It's a good one. You might also ask your doctor about and research s. boulardii. It is a yeast that is supposed to be beneficial in preventing c-diff relapses. I'd wait until you are on the Dificid a few days and somewhat stabilized before trying it though, so you will be able to tell how it affects you. Since it is a yeast and not a bacteria, you can take it without regard for when you took the Dificid. With the VSL-3, try to space it as far from the Dificid as possible. For convenience sake, I just take my VSL-3 and s. boulardii together. Also read the article under "media reports" about the benefits of kefir. It's a good probiotic drink that you might want to consider and it has also been shown to be helpful in preventing relapses.

I'll be praying that this round of antibiotics works for you and you can start to heal.

[getwellsoon]

Good advice from Bea. I just wanted to add that I am one who had multiple courses of meds until finally Dificid knocked out my Cdiff after over a year. It took awhile before I began to feel better but now, over 2 yrs. later I can say my GI issues are much improved. It takes some of us a long time to heal so try to hang in there. It won't happen overnight but you will get better. If the dificid doesn't work there is always the FMT, which has a great cure rate. Glad you are seeing a GI now and you also might wnat to get an ID on board also. Good luck and keep us posted.

[ResearchGrandma]

Dificid also helped me after more than 1.5 years of C. diff. Your diet is so limited it seems that you are probably not getting sufficient protein. Did you doctors put you on this restricted diet, or is it self-imposed? I was able to tolerate tofu, smooth peanut butter, smooth almond butter when I had active C. diff. (At least these foods did not make things any worse than they already were - so I considered this to be a definition of "tolterated".)

[Misscshell24]

Thank you for sharing your experiences and insight.

Did you have any of the side effects from Dificid, like nausea or abdominal pain, etc? If so, did the side effects continue the whole time you were on Dificid or did they improve? Also, did you do the 10 day treatment or a taper?

The two previous times I've been on Vanco, it was just for the 10 day treatment. I would possibly like to ask the GI next week about tapers or pulsing. I did research on Florastor and ordered it. I will plan on taking the VSL#3 and the Florastor in the middle of my Dificid doses.

My diet is a self-imposed, desperate attempt to find a pattern or reason as to why I've felt so awful for so long, but has been to no avail as I still feel awful, with some days less awful than others. At least having a positive test gives me some reason for my symptoms, because I've been going a bit nuts trying to figure this whole mess out. Also, one of my surgeries was a gall bladder removal, so I have to be careful about my fat intake. As a general rule, not more than 3 grams of fat per serving at first. I have tried and eliminated many things, including kefir, which didn't go well. Once I'm consistently feeling better, I will try slowly adding things to my diet. I did see a ID once, but he wasn't much help.

Thanks again for your support!

[getwellsoon]

Yes, I had gas and nausea from the Dificid. I had it the whole time and only did the 10 day treatment. Some of my feeling so bad was probably IBS also. Most people report that they have no side effects from Dificid but I had to be one of the unlucky ones who had them. Hope you feel better and the effects subside soon.

[ResearchGrandma]

I took dificid after several relapses of C. diff. I was trying to arrange for an FT and had waited a month after testing positive before doing any treatment, and that turned out to be 2 weeks of vancomycin. I usually felt slightly better while on vancomycin. I waited 3 days, and thought my stools were regressing, so then I started the dificid. I remember that my fatigue increased markedly with the dificid, and I felt generally awful, and I wasn't sure that I was going to be able to finish the full 10 days. Then halfway through the medication, I forced myself to go to my favorite park and walk a bit - I forget how far I managed to walk - at least a mile, possibly 2 or 3. After that I didn't feel quite as bad. But after I was finished my stools didn't seem to have improved, so I thought the dificid didn't work.

[Misscshell24]

Thanks, again. I'm half way through the 10 day course, so wanted to update and share my experiences with Dificid so far, incase it might help others.

I, too, have the general awful feeling and nausea. It is manageable with nausea medication. The first couple days were worse, but have improved a little bit. Restlessness is listed as a less common symptom, but I believe I'm having. It feels more like anxiety or like I've had too much caffeine, so I'm sleeping about half of the amount of time that I used to, even though I'm feeling tired. Overall, for me, it will be worth it if it works.

I'm also still having abdominal pain and a stabbing pain around my ribs, more so on the left side. I'm hoping this subsides as I continue with the Dificid and my body heals, if the pain is caused by c diff.

My barium series was normal. I have an appointment with my GI tomorrow to go over a follow-up plan. I'm hoping to discuss pain management (OTC pain meds aren't strong enough) and what to do if the pain doesn't dissipate, food intolerance tests, and retesting for c diff to see if it's gone after the Dificid.

Does anyone have any other ideas or suggestions to discuss with the GI?

Thank you.

[beth22]

I got elevated pancreatic enzymes and I guess pancreatitis after c diff and the meds to treat it. The pain and discomfort I get is usually when the lipase level is high. I would ask your doctor to check your pancreatic enzymes and liver enzymes just to make sure that is not part of the pain you are experiencing.

[Misscshell24]

Thank you. I will ask the GI doctor about that tomorrow.

The pain is really bad today. Feels like a stabbing pain under my left rib and my abdomen is being stuck with a bunch of needles. I've taken prescription pain medicine and am still in a lot of pain. So I greatly appreciate your input on asking the doctor, so I can hopefully figure out the cause and treatment for the pain.

[beth22]

When I get pancreatitis it is on the left, but it can also be the colon. It is a simple blood test to see about the pancreatic and liver enzymes, so might as well rule it out and start narrowing down what it could be.

[NanciT]

I also had difficulty with the 10 days of Dificid twice a day. Had alot of IBS symptoms. I did relapse after 14 days and went for a second round. I actually thought if I had been on it a bit longer it may have worked. I felt so well right after I finished.

I am currently on a Dificid taper. Started with 10 days again but this time I developed a UTI, had to go on antibiotics and continued. I am currently on 1 dificid a day and feeling a bit better. Still having IBS. The plan is to stay on it for 20 days, then taper to every other day for 12 days. Then they have considered every 3rd day.

I finally got into my second opinion in Oakland and to talk about FMT. The doctor feels this may do it for me and wants me to continue with the taper. If it returns, I will have the FMT. I am feeling very hopeful

I hope the Dificid will work for you ( and me!) as I have read so many have done well.

Sending positive thoughts out to you

[Misscshell24]

Thank you so much!

Wanted to share an update since my last post. The evening of my last post I ended up going to the ER becasue the pain was unbearable and the prescription pain medicine I have did not help with the pain. The ER doc did an X-ray and bloodwork that came back normal, so he gave me a couple different pain injections and sent me on my way. The next day I saw my GI, he ordered bloodwork for Celiac disease, pancreas panel, and scheduled a lactose intolerance test for this coming Wednesday. Although, I have not had gluten or dairy for weeks.

Since my ER visit I have continued to have A LOT of pain. In fact, abdominal pain has been my main symptom and concern for a while now; I have had very little D or IBS symptoms since I was first diagnosed with c diff in July, only occasional loose stools and M, but have still had two positive tests. Friday I was prescribed another pain medicine, so I'm taking two different ones now. The new pain med is a NSAID with some scary side effects and is only recommended for 5 days or less, but is helping with the pain. This morning I took my last dose of Dificid, so I really hope the pain lessens with stopping the Dificid, as the doctors are treating me like a pain medicine junkie and say there's no reason I should still be in pain or needing pain medicine.

[Bobbie]

Your story is a familiar one. Pain and insufficient explanations. Glad the pain meds are helpful but the do have side effects - constipation and more pain are two of them.

Have I Mentioned a heating pad? Helps with pain and no side effects. When the pain is really bad, lay on your left side, draw your legs up into a fetal position and put the heating pad on your abdomen.

Best to you. Keep us posted.

[Misscshell24]

Yes, thank you. I did buy a heat pad when you first mentioned it a while back. I still use it every day and night. It helps a little, but unfortunately the pain is too severe for the heat pad and OTC pain relievers. The pain medicine that is helping is only recommended to be used for 5 days and I've been using it for 3 days so far.

As I'm sure we all know and have experienced, abdominal pain is a common symptom of c diff and abdominal pain is a common side effect of Dificid, yet the doctors don't think I should be in pain. It is hard to be hopefully during such a long and horrible experience, that said, I am trying to be hopeful that the Dificid worked, so the pain from the c diff and/or Didicid will start to subside.