Newly Diagnosed and Scared-Please Help

[lunasdad]

Hi-

I am a 39 year old male. I have suffered from mild to moderate IBS-D for the past 20 years. Also, my whole life I have had weird reactions to antibiotics so I try to avoid them. In May I was placed on steroids for a neck injury. I ended up in steroid withdrawal and was very ill for several weeks. Also, the steroids and painkillers for the neck injury caused inflammation in my esophagus and triggered my IBS-D symptoms. I went to my GI and he ordered and endoscopy and colonoscopy 3 weeks ago. My colonoscopy was clear and my endo showed GERD. I was prescribed Aciphex for the GERD. Early last week I was woken up at 4am with terrible pains in my lower left abdomen and had violet D every 30 minutes all morning. I went to work and it got worse. I thought this was a simple stomach virus that I received from my kids, but it intensified that night and the following morning. I went to the ER and a CT scan, blood test and stool sample were ordered (this was only after the doctor in the ER and my General Care Doctor who was in the ER argued with me and said it was just my IBS and I refused to leave until they tested me). To there and my surprise I tested positive for CDIFF. I was prescribed 125mg of Vanco 4 times a day for 10 days with instruction to follow up with my GI doctor. I was then rushed out of the hospital with the instructions and sent home. For the first 2 days (Thursday and Friday) on the Vanco, my pain went away and I did not go to the bathroom. Saturday morning I was woken up with 1 bout of horrible D, rest of the day was fine and I had a somewhat thin/formed stool that night. Sunday morning I had 1 movement in the morning that again was somewhat formed but not D. That night I started to have a queasy feeling in my stomach. Early Monday morning, I was hit with multiple rounds of D until about noon that day. That night I went very little. Tuesday morning I went very little and then went to my GI, he gave me fluids and said if any symptoms remained to double my Vanco for the rest of the 10 days and see how I feel. When I got home I had 1 more round of bad D. So in total I have completed 6 of the 10 days on the Vanco and have the following questions:

1. Is it normal to go up and down with the D while on the Vanco? Meaning at first I felt ok then it got worse then better than worse? Is the fact I am still having odd bowel movements, but not often a good sign?

2. Can the Vanco cause my bowel movement to be not normal? I have noticed the stool is oddly colored (orange) and has a strong smell.

3. If after the 10 days I do not have a normal bowel movement, what do I do? I have not gone to work in several days because the Vanco hasn't really helped. Will my stool get better once I stop the Vanco?

4. Can I take Imodium while on the Vanco? I have seen mixed things on Google and my doctors have different opinions.

I do appreciate any help you folks can provide. I wish you all good health and thank you.

[georgina]

Some people have normal BM on Vanco , some have looser stool but frequency and other symptoms like pain or fever etc are controlled. Usually the antibiotic needs a few days (5-6 days) to fully kick in , but if you reached the 6-th day and you have no relief it may be a sign that the dosage needs to be raised to 250 mg .Also , are you keeping a diet? If not you may want to start eating easy to digest foods. You can also try to add a probiotic to your regime , Florastor is a friendly yeast that can be taken along with the antibiotic.

[beth22]

Vanco at first made my stools firmer, but then after about 5 or 6 days it made them looser. I had the opposite of you- the vanco killed all stool smell and that was not good - my bacteria was pretty well wiped out. Were you tested for any other pathogens besides c difficile? There are other bacteria that can cause similar symptoms. Also, I found vanco to be hard on my gut, so perhaps it kicked up your IBS-D too. I would talk to your doctor about all this and see what he/she recommends. If increasing the dosage did not help, it might not be the c diff that is causing your symptoms.

I don't know what you are eating. I found I could no longer tolerate dairy. I cut out yogurt and that helped. Later, I had problems with fruit and vegetables.

[lunasdad]

Thanks you for responding. My pain and frequency has gone down. I have been eating the BRAT diet for the duration of this and have lost 7 pounds. Usually I get woken up early morning and will have a BM that is loose and not a lot of volume. I have no appetite so eating has been tough. For the last 3 days it’s been 3-4 BM a day, sometimes diarrhea, sometimes small formed pieces. I keep getting dehydrated to the point that my resting heart rate is over 130. I’ve had to get iv fluids twice already to calm it down. Should I be in a hospital at this point? My doctors do not want to put me in but I’m really struggling. How do I know if the Vanco worked if my BM's are not normal? I have read that stool testing after CDIFF can still show CDIFF even if you are ok.



Just to update, I woke up this morning and had a small loose stool, not formed. I had a small amount to eat at 8 am. For lunch I had 3 pieces of chicken (boiled) and a white potato. 30 minutes later I had a watery BM. I am not sure what to think at this point. Seems like the Vanco isn't working. Would love more advice.

Thanks

[Bobbie]

Lunasdad,
Read the first forum for information on c diff and the rules of posting on this site. We can't answer medical questions but do offer emotional support. Ask your doc about possibly subbing ranitidine (generic Zantac) for the Aciphex as PPIs have been implicated in c diff - acid reducers not so much. I have had GERD for over 25 years. (Have hiatal hernia).

Ask your doc about Imodium. Some OK it, some don't. It can be helpful in leading an almost normal life.

Wash your hands, cut back on dairy and sugars, and hang on. You are young and will probably recover quickly.

You will eventually recover. Keep postingp. We care.

[lunasdad]

Appreciate your response. I am really upset about this. I have an amazing and supportive wife, 2 little kids that need me and a job I have worked really hard at to obtain the position of Partner. My mind is running a million miles an hour with visions of never getting out of my house and being on the couch and missing out on life. I have only been home for a week and I am already going crazy. Part of it is because I have had bouts of IBS that were very bad for short period when I was younger, but this is a whole different level. I have a lot of responsibility now and people depending on me. My wife and I have trips planned for August with my kids and I am thinking now that they might not happen. So much of my life is around going out to eat, movies, baseball games , traveling and I guess I am scared that it will all come to an end. It is good to know that there are people on this board that are supportive and understand.

About the Aciphex-my Infectious disease doctor said absolutely not to take it..my GI said and I quote "cats already out of the bag, it can not make it worse". I decided to stop the Aciphex and take Tuns if needed. I am not eating pretty bland at the moment so my acid should be controlled.

[OCmama]

You will get better - it can take a bit, but you will get your life back. Not medical advice, but I was successfully treated with Dificid (only antibiotic currently on market which specifically treats C. diff).

[beth22]

Tums is calcium and there have been studies done that calcium makes c diff spores germinate. Not sure if this is a good thing now or not. I have not heard of c diff resistance to vanco, so I would speak to your doctor and explain all of this. If you are on vanco, chances are your stool test would not be accurate and would show negative for c difficile. Ask about the Imodium as Bobbie suggested. My GI did not want me to take it, so I took Pepto Bismol which helped.

[lunasdad]

Wanted to give an update on see what folks think. My stomach felt better on Thursday, Friday and Saturday. I did not have any WBM. My stomach felts somewhat upset but I was not running to the bathrrom. I finished my Vanco yesterday around noon. This morning I woke up and my stomach was feeling upset, but not to bad, I had an OK BM, but an hour later I had another BM that was not formed, small pieces. I am still eating very carefully. At this point my main issue is that although I am hungry, after I eat I have stomach pain. Is it normal to still have an upset stomach like this once you finish the Vanco? How would I know if it is still CDIFF?

[lunasdad]

Just wanted to give an update because I was feeling much better but now I feel like I'm back to square one. I completed my Vanco regiment 2 weeks ago. I have been taking the Florostar at night and not other medicine. After finishing the Vanco my stomach actually felt very good. I was having normal BM's and not having urgency. Thought that I was over this. However, the last 2 days the pain in my lower abdomen and urgency has returned. Yesterday morning I had a bout of loose stools in the morning but did not have any issues the rest of the day. This morning I woke up and had pain and an urgent BM but it was not loose. Since then I have had 2 more loose BM's in less than an hour. I'm starting to get really nervous that the CDIFF is coming back. How do I know if this is the CDIFF coming back and at what point to I call the doctor? Please provide any help you can afford.

Thanks

[brandine]

lunasdad,
I finished a 10-day vanco treatment just over 2 months ago after being diagnosed with C.diff on May 14.
I can tell you that, in my experience, feelings of being back to "square one" and thinking you might be relapsing are very common.
But it doesn't mean that you are; it often means only that you are healing and recovering,
which based on what I've read on this board can be a trying time, taking even 1-2 years or more.
Treating again--when it might not be warranted--could make this time period longer because of the strong antibiotics,
so it only should be done if absolutely necessary.

There have been many ups and downs in my own experience, but I've learned to relax about my daily bathroom activity.
(I was recording it for awhile and stopped after I realized it wasn't helping and was only encouraging my anxiety.)
Some days seem almost normal, and I'll have a stretch of 9-10 days or more of feeling normal-ish.
But then I'll have an episode of D. or a few soft stools (over 1 or several days) and I'll find myself worrying.
However, every time--so far--my body has adjusted and not returned to a full-blown c-diff infection.

I'm a big supporter of waiting it out--the 3 day/3 WD rule--unless you have other symptoms that signal a downward spiral.
This is supported by my infectious disease doctor who told me to wait 48+ hours if the D. is manageable.
And he said that he only treats symptoms, not just a positive test result.
After a couple of days of D. in mid-July and a positive test result upon going into Urgent Care, I almost ended up treating again.
But just when I thought "this is it," my symptoms subsided and I felt well.
My ID doctor said not to treat. I'm very thankful for his wisdom.

It can also help to have a plan that you sort out with your doctor (a specialist in c.diff, ideally) for the "what if."
My plan (made with dr.): if I end up with 48+ hours of WD, I will contact my dr. on the first day;
he'll prescribe dificid but I won't take it until I've waited it out a bit (past the 48+ hours) to see if symptoms subside again (as long as symptoms aren't worsening terribly).
Dificid often needs to be pre-authorized and shipped overnight, since many pharmacies don't carry it (not even my local clinic/hospital pharmacy).
Therefore, if my symptoms escalate in ways that my ID doctor (or infectious disease doctor on call) deems as aggressive,
we will treat for day or two on vanco while waiting for dificid.
Still, the "wait and see" part is key... both wait to see if any treatment is nec. and if it is needed, try to wait for dificid.

Having a plan and an advocate via my doctor really puts my mind at ease.
I recommend getting this support and talking out a plan with your doctor who can help you determine when it's time to treat--in clear terms (my primary doctor had said 24 hours of D, but my infectious disease doctor felt this wasn't enough time, as long as my health was otherwise stable).
A caution: my primary doctor and the urgent care doctor wanted to treat, when it really wasn't necessary, since even though I had a positive test, my symptoms had subsided;
it was the ID doctor (the specialist) who had the expertise to say "don't treat unless absolutely necessary"--since, strong antibiotics can continue to wreak havoc on your gut, and you only want them if absolutely needed. Therefore, I recommend getting a specialist. Self-advocate! Many general doctors simply don't have the expertise and aren't up to speed on new protocols endorsed by the Infectious Disease Society of America.

I wish you the best, and that your body continues to heal! Try to be patient and roll with the punches. I know it isn't easy.

[jG43]

I agree with Brandine. I had three relapses but when I finally got better it was not as if then symptoms just switched off. I would have bad days when the d would come back. I would panic and worry that it was a relapse. I would eat bland and drink lots of water and wait. I think it is common to have post c-diff ibs symptoms due to the damage the toxins do to the gut. As my body healed I had less and less off days. I also know that the anxiety I would go through on off days just seemed to compound the ibs symptoms. I really think the 3 day rule of not testing unless you experience 3 or more wd for 3 days is a good guideline to follow. You have to realize that your bm will not be the same for a while. When I relapsed I knew because i had wd that would continue to get worse and worse. My gi said some people need a year or more to really fully heal. I tried to remind myself that healing from a major gut infection simply takes time. Even a simple cut can take a while to heal. You will get through this. Hang in there it sounds like you are on the road to recovery.

[lunasdad]

Thank you all for you kind words and support. This is such a frustrating illness to have and on top of my IBS its just compounds the issue. My stomach felt better yesterday morning and I went normal. Last night, loose BM again right after eating, and again this morning. Trying to stay positive but as you all know it is very difficult. My summer has pretty much been ruined. We have a family vacation in 2 weeks and I am nervous that this will ruin it. After that I need to travel cross country for my job. I just do not know how I am going to do this. I'm planning on speaking to my doctor tomorrow if this continues. I am just nervous that he will put me on more meds for a longer period of time. My GI and ID both told me that if stool testing after CDIFF is not reliable so they treat is based on symptoms. Because of my IBS I feel like they are going to just tell me I need to take the meds again and see what happens.

[D1dad]

I think your mind is in your way and I understand. I had it in March and took 17 days of
Flagyl which did get rid of it. I too travel a lot and have a family as well. I was able to take a few weeks off but on the 3 rd week had to fly from Detroit to KC for two weeks. I had a waiting prescription at any Walmart pharmacy and was taking my temperature ever hour on the hour. I was a friggin mess. In addition to that I was taking probiotics and eating yogurt like it was crack. Half way through the trip my stomach was a gurgling cauldron and I had a breakthrough. Why was I taking so many things Ive never taken in my life and was this compounding my stomach and anxiety. I spoke with my GI and her advice was get some benefiber and start slow and for crying out loud lay off all the probiotics and try and just find one. By the time I got back home I had made a huge improvement in mind and body. I was literally like an alcoholic setting outside of the pharmacy contemplating whether to get the script filled and I’m glad I didn’t. I’m going on 5 months and feel almost back to normal with health and diet, but I remember exactly what your going through. I’m sure people have mentioned pepto but it’s value when your going through this can’t be stated enough. Even to this day when I indulge the night before and have a come to Jesus bowel movement I pop 1 pepto tab and all is well. Luckily those days are getting fewer and fewer and yours will to

[lunasdad]

Thanks for the response. I think what I am most upset about is how sick I feel all the time since this started. Right before I started having the stomach issues from CDIFF I was having severe body aches and feeling run down. Soon after I started having the WBM and was diagnosed and completed the treatment. Once I finished the Vanco I felt back to normal except for some slight stool changes. The pass few days I have been having the body aches and fluish feeling. No appetite and just feeling awful. From what I am reading on this site, this can be par the course for someone recovering and I need to ride it out so long as I am not running to the bathroom all day.