I need some advice

[beth22]

I have been off medication for 23 days now after the worst relapse of c diff ever. I took a tapering dose of vanco for 3 weeks, followed by Xifaxan. While on the vanco, my stools never really looked normal, but I did a little better with the Xifaxan and after starting it, the odor left. However, since then, nothing has been normal in terms of being solid, etc. However, I felt better and started to introduce some foods into my diet that I could not eat before with the SIBO - vegetables. Did not gain weight, but felt good about at least being able to tolerate the cooked vegetables after such a long time.

I had gone to Duluth for an ng transfer in early July, not so much for c difficile, as for the dysbiosis and SIBO symptoms. Well, as my luck would have it, I relapsed with c difficile the week prior to the infusion and my doctors did not realize, nor did I realize it was a relapse. So, the infusion did not work and I got the major relapse of c diff two weeks after.

This week my symptoms point to another relapse or really bad IBS/SIBO. My ID doctor is out of town - he apparently does do stool transfers here in town, but seldom. Well, he doesn't, but he refers the patients to a GI to do them. However, he would consider me if I relapse again. His associate told me to start taking vanco with the symptoms of the relapse in spite of the fact that I had a negative test. My GI said to take Xifaxan, as it would cover both the SIBO, if that is what it is, or the c difficile. However, I had a relapse while I was on a lower dose of vanco before, even though the toxin is still supposed to show up - it didn't, and that is why no one realized it was a relapse before the infusion I had.

My question is this: Should I go ahead and start medication as suggested or should I wait for a positive test. The lab lost the one from yesterday, but hopefully one will be ready tomorrow. The last relapse gave me fever, 40+ trips to the bathroom, and a visit to ER, and as I said nothing has been normal since, not even halfway normal. After my relapses before, this was not the case. So, if I wait to start medication, I run the risk of getting really, really sick again. If I take the medication I will not get a positive test, even if I am positive and no one will do another stool transfer, and nothing else really works for me. I could do the home infusions, which I would do, but the stool transfer, would be the enemas AND an ng tube transfer, thus covering both small intestine and colon.

Any advice would be appreciated. Am back at work teaching all day and it is REALLY hard with the symptoms, fatigue, etc. That's why I was hoping to be eligible for the stool transfer.

Beth

[klt03301]

Beth...I'm so sorry to hear that you're sick again...my question is...how many bathroom trips now? The mods may decide to put this one in TMI..I don't know if they'll tell you if they do, so if it doesn't show up in this forum, look in that one. I would ask many more questions and have more to say if it were in TMI. Maybe post it in TMI yourself?

Karen

[beth22]

It's not to that point yet - I just don't know if it would be better to take the medication or to wait for the test results. The vancomycin is what mainly gave me the SIBO - killed the c diff bacteria and good bacteria and made others overgrow. I would probably be better off with Xifaxan, but if I wait until the symptoms are really bad, then I have to take vanco first. It's like whatever I do, I can't win. But without a positive test the doctor here won't even consider a stool transfer and Duluth is too far to travel and the ng tube alone for c diff failed on me before. Only the colonoscopy worked, so the procedure here would cover the colon too. It's been so long dealing with this that I'm worn out. I lost two more pounds in one week, am malabsorbing some vitamins, my skin is sagging and dry - I'm about ready to give up. Between having the SIBO and the c diff I don't know what to do. Can't even drink Boost - does not agree.

[cindym]

Personally Beth if you get as sick as I did (NEAR DEATH) then it is not worth the risk nor the illness to wait for a positive prior to starting vanco. I would rather DIE than ever be that ill again. It is up to you but my choice would be to ward off the relapse and stay feeling human!

[cindym]

Forgot to say------I have been dealing with cdiff for over 7 years and I do keep it under control with meds. You are right they will not consider doing infusions without recent culture but I would consider the options------if you are too ill to travel (should you relapse hard) then you are the one that goes through it NOT the doctors.

[beth22]

Just to update. I decided to wait with taking any antibiotics. The c diff test is not back yet though. My GI said it sounded more like IBS or SIBO than c diff, so he told me to take some Pepto Bismol after meals - just a little. So two nights ago I started with just a teaspoon and yesterday the same after breakfast and lunch and didn't notice a lot of relief from it, so I didn't take it last night after dinner. But, today I felt much better and did not have all the gassiness, etc., so I took 1/2 tsp. after lunch. I know that Pepto is used to treat microscopic colitis and my internist today told me that it also helps with other inflammation in the colon and intestines.

I also found out that I am malnourished from not eating properly for so long and that I have to start eating more and better or I will wind up in the hospital. He said I also have to take vitamin D and a multivitamin, so I'm hoping the Pepto will keep things a little quiet and enable me to eat and absorb my food. A friend's mother had microscopic colitis after getting the stomach flu (you get it after any type of intestinal infection - viral, bacterial or parasitic) and she lost a ton of weight, was malnourished and the Pepto enabled her to eat normally again. I hope it helps me as I don't want to go to the hospital. So, unless the c diff test comes back positive, I will try this and if it doesn't work, then I guess the Xifaxan.

The vanco is what mostly is responsible for my IBS and SIBO because I took such high doses for so long and it destroyed my good flora and allowed other bacteria to overgrow and give me the SIBO. I don't do well with probiotics, so I was not able to replenish the good bacteria, although now I am taking some VSL#3, but only small amounts. Something is better than nothing though.

So, I'll give it another go and hope that things get better. Please keep me in your prayers - I look like I'm anorexic - went down two clothes sizes already. Thank you everyone for your help and support for the last few months

Beth

[klt03301]

Beth,

I hope the Pepto does the trick for you. Sounds promising so far. Gas x helped me a great deal. You've had it rough...I didn't think I was going to make it through and I don't think I was as sick as you, so you're tough!!! You will feel better and you'll gain your weight back, though it may take time. I gained more than I weighed when I had c-diff, but that took well over a year. I then had to work to get it off again. Will keep you in my thoughts!

Karen

[Vikingjeff28]

Xifaxin really helped me. I took it for 10 days after 3 rounds of Flagyl and one round of vanco.

[sangeeta]

I am praying that you will feel better soon. I am so sorry you are going through this. May God be with you.

[Hua Kul]

Beth, I too am so sorry for what you are going through. You wrote, "He said I also have to take vitamin D and a multivitamin." Vitamin D is very critical for our immune systems. The general concensus has become that we need about 2.000 IU per day of natural cholecalciferol (D3). Fortified milk has about 200 IU per 8 ounces, but it is a synthetic version, ergocalciferol (D2) that some feel should be avoided. Here are a couple of links to good vitamin D information. The main source is sunshine (UVB specifically) on our skin, so if we use a sunblock or don't spend sufficient time in the sun we won't be getting enough D.

http://articles.mercola.com/sites/artic ... pdate.aspx

http://www.mercola.com/article/vitamin-d-resources.htm

God Bless
--Hua Kul

[beth22]

Thank you Hua Kul. I did go out and get a softgel of D3 1,000 IU which I'm to take every day. The doctor wanted me to take more, but my system does not tolerate things well right now, so I am to start with that and I will go out in the sun daily - I live in a sunny climate. Hopefully that will do it. If not, I will have to increase the dose. I am also low in carotene, so I am trying to eat the vegetables that have it - cooked and will start a multivitamin with A in it tomorrow. The doctor said not to take carotene orally, as it is apparently not that good for you and can cause D* too. Thank you for the links. I hear vitamin D is also good to help prevent getting the flu and other viral illnesses. I hope so, as the doctor said I can't have a flu shot right now either as my system is too weak.

[cindym]

I recently read that too much Vitamin D is not good for you so do not take massive amounts. I will try to find the article and post it. I just do not remember where I read it.