Help!!! EXTREMELY Scared!

[HennyPenny68]

I ended up in the hospital for a week with abdominal pain and difficulty breathing. Prior to that I had episodes of IBS like diarrhea. They decided it was my gallbladder and had surgery for it. Then the GI doc wanted to test me for c diff which he said came back positive. He also did a scope and found ulcers in my colon which he biopsied and the results came back positive for ulcerative colitis. He had already started me on the vanco for c diff. I'm afraid that I didn't really have active c diff and was just colonized but I am not getting any better yet. I have been 5 days on the vanco and the diarrhea has been bad. Went 10 times yesterday and 3 today already. I'm already so weak from the surgery and being in the hospital. I don't know if I can survive this round of treatment. This is my fourth bout with c diff and in the past when I've been treated my stools never get normal while on vanco. Has anyone else experienced that? I'm so scared! If I didn't have active c diff, then now it's kicked it up by treating it and to have ulcerative colitis along with it is scary! If I need to how fast can I be able to go to have a stool transplant?

[beth22]

For a stool transplant you have to have your donor tested - stool culture, ova and parasites, c diff and a whole bunch of blood work testing for hepatitis, HIV, etc. That takes at least 4 days or so. However, you have to get a doctor to agree to do this and usually must have your own doctor call with a referral, unless your own doctor is willing to do it, or there is someone where you live that does it. You could call the clinic in Duluth - they are listed in the doctor's section I believe.

[HennyPenny68]

Is the stool transplant considered experimental? I'm wondering will it possibly be covered by insurance. For those who have done it, what's the ball park cost for this procedure?

[anlockwood]

It is considered experimental and I have never heard of insurance covering it. I don't know for sure as I have never had it done but I think I remember reading somewhere else that in Duluth it was around $600.

[beth22]

It cost around $500 when I had it done about a year ago and my insurance covered it. They should at least cover the consultation part of it, maybe not the x-ray.

[Bobbie]

HennyPenny,
Am so sorry to hear you have C. diff. again. Know where you are "coming from." Had it for 4 yrs. the lst time & then again 2 yrs. later & am a prime candidate to have it again. What helped me (the lst one didn't work) is "the broth." See Doctors - Dr. Mark Allen, KC. Call his nurse Cheryl for details.

Do you have an ID in your "bevy" of docs.? Sometimes they are the most knowledgable about meds.

We wish you the very best. Pls. post & let us know how you are doing.

[HennyPenny68]

No, I don't have an ID doc. Right now I just have a primary care and a GI. It's so hard to know what to do. I've heard that people with ulcerative colitis or crohn's never do have normal stools while taking vanco and that certainly seems to be the case for me. I have so many other things too that could also be the cause of the watery "d". I've heard many people have it just from having their gallbladder removed. I think I also have gastritis as well. I was getting to where I could eat some but the last few days, whenever I try to eat I get full easy and start bloating really bad. The scary thing is knowing there is no "quick" fix!

I would consider the broth treatment as it sounds more palatable but it seems it doesn't have as high of a "cure" rate. Since most likely I will have to pay out of pocket, I'd like something that has a higher chance of working. I don't even know if my docs will go along with any of it yet. I just don't know what to do. So many options and not sure what's the best course.

1) Finish out this 14 day course of vanco and see what happens.

2) Ask doc about doing a long taper of vanco.

3) Ask about doing a pulse.

4) See about possibility of doing stool transplant.

5) See about doing the broth treatment.

I know I'm not a doc so I don't know the best course but it seems most of the docs I've encountered aren't as knowledgeable as me in the area of c diff. I'll just have to keep praying for guidance. I do thank you for your encouragement. It's such a big help!

[beth22]

My stools were never normal on vanco either and I do not have either Crohn's or ulcerative colitis. Have been tested recently. Right now you really don't seem to have much choice except to stay on medication. My GI tells me that vanco is given to people with colitis as well sometimes. I tried tapering, but when I got down to one pill a day I relapsed big time. That was 4 months after being diagnosed. But, others have had success with it.

If you opt for a stool transfer you will still need to take vanco up until the night before the procedure anyway. Then after the procedure you are not supposed to take any more. I know that more doctors are hearing about the procedure - maybe because of the episode on t.v. on Grey's Anatomy, but my doctor said he just recently heard an ID in town talk about it and said he was doing some type of transfer here. In any case your doctor would have to call to refer you and explain your history. Then you have to get a donor tested - that might not covered by insurance. My husband's insurance did cover it, but he had not met his deductible so had to pay, but a discounted rate. Try to get a good ID doctor who can talk with your GI to get the information he needs and between the two of them they can find a plan for you.

[monacat]

i was on vanco for 3 months(the second time) and my stools never "normal". If you want more details feel free to send me a message and i will give you more info. I was also really really sore throughout most of my taper. i worry that 14 days is not a long enough treatment. what is your dosage? i found that the 1st time i was on it they gave me 4x125mgs. this did nothing for me. it wasnt until i was on 4x250 and tapered down over almost 3 months that i may have kicked it(i am still keeping my fingers crossed, it has only been about a month)and though i am feeling great for the moment i know that i am still volatile. i will add agin that i felt like garbage throughout most of my vanco treatment. i am convinced that vanco played a part in my frequent stools also.

[cindym]

Henny Penny- It is all in the way the doctor files the claim if it is paid or not. I have talked to people who had it done through colonoscopy and it was billed like a colonoscopy and therefore paid by insurance.

Your dosage of vanco could be too low if it is not working. It took nearly 6 weeks after my first episode to ever have any consistency in that department. I had p.colitis which is the worst form and therefore that could have been the reason. They finally upped my vanco to 250mg X 4 and it then started getting better.

If you are considering the implants I would do it NOW while you are producing positive cultures or later it might not be possible.

[cindym]

Need to clarify what I meant by it could be too late. Most of the doctors that are willing to do infusions require recent positive results. If you are one of the unlucky that continually relapse sometimes it is not that easy to produce positive results because of the inability to stay off the meds without relapsing. good luck!

[Kathy George]

I was on the Vanco tampering too, but didn't work too well. As soon as I started tapering down the big "D" started all over again. That is why I decided to do the Home Enema Infusion method created by Dr. Borody. It was successful and I've been C-Diff free for 4 months. Stay positive and you can beat this beast.....

[HennyPenny68]

I'm sorry to have dropped off of here. I ended up back in the hospital with dehydration and several hospital stays. I have had a very rough road these last couple months. I ended up going to Mayo Clinic in Rochester, MN cause the docs where I live couldn't do anything else for me. It turns out that not only have I been treated for C diff and ulcerative colitis, and had my gallbladder removed but they found out that I have mild chronic pancreatitis. I was in Rochester for 3 1/2 weeks. I ended up tapering down on the vanco and have been off of it for about 2 weeks now. I still have "d" but only a couple times a day. The mayo GI doc says that he's not even sure if I have UC or Crohn's or if it was just c diff. Basically, I've been sent back home in hopes that I will improve over time. I have lost 20 pounds and have been very weak and fatigued and at times I feel like I'm losing my mind as well and can't seem to handle any stress at all! Just the thought of going back to the hospital brings lots of fear and anxiety to me. For now, the plan is that I have to go back to Mayo in 3 months for a follow up. I just hope I don't have any further complications and am on the road to recovery.

[sangeeta]

I am so sorry you have gone through so much. You seem to be on your path to recovery, it is a long haul but we all make it. Hang in there and be positive, God bless!

[Bobbie]

HennyPenny,
Sorry you have been through so much. Hope you are on the "upswing." It sounds as though you've been proactive and involved in your care -- good for you.

Maybe time will be the cure, but I know how very stressful the waiting is.

Read some of the info. in FAQ about getting through C. diff.

Wish I could offer you more than good thoughts and prayers for your recovery.