Advice on Recovery

[lunasdad]

So another day and again watery diarrhea 2 times so far. I spoke with my GI and I submitted another stool test. Been over a week since my last normal BM. Going to wait for the results but seems like it’s back. I feel awful, sleeping a lot and have no appetite at all. My lower abdomen is hurting today and the urgency and pain have increased. I’ve been eating all my safe foods and it just doesn’t seem to work. Since this started in July I have lost 30 pounds. I am petrified of having the FMT. Sorry to be such a downer but I have had it.

[roy]

You said " I have suffered from mild to moderate IBS-D for 20 years"
Are your symptoms any different to your usual IBS symptoms?
What you describe are not the symptoms of c.diff (that needs treating).

A poster once described c.diff as "an involuntary waterfall flowing from my butt" and that's a perfect description!
20 times a day is typical c.diff, 2 times a day might be your "normal" IBS.
Its difficult to tell the differance.

[lunasdad]

Roy-

Appreciate your help on this because it is all so confusing. My IBS was generally have diarrhea soon after a meal. When I first had the cdiff diagnosis I had what you described and then some. Before the wbm started I felt fluish and then the pain and wbm started. Again, the stool much different than my IBS. Took Vanco and things started to get better. Fast forward a month the fluish feeling came back, followed by wbm, I waited a few days but the flu symptoms worsened and I ran a temperature and tested positive again. Treated and then for the better part of a month things were going well. The last week or so, feeling fluish again followed by worsening Diarrhea and stomach pain. At first I was going twice a day small pieces and actually thought I was constiapted but felt fluish the whole time. Then the last few days I have had bouts of watery, mucus D. Also, I have a lot of rectal pain. It almost feels like my stools are leaking. (Sorry to be gross) None of these are typical of what I have experienced with my IBS. The D by itself I would probably chalk up to my IBS worsening but it’s the fact of how awful I feel that is actually why I think I may need treatment. Both my doctors are high on the FMT procedure and my fear is that they may be putting the cart before the horse but in the mean time I feel awful. My diet has been pretty restrictive, boiled, baked and grilled chicken, toast with jelly, banana, Gatorade, steamed veggies, etc etc. I am also taking Florostar 2 pills a day at bedtime and amitryptaline for my IBS.

[lunasdad]

Again..thanks for the help and support on this site. I hope one day to help others how you all have helped me.

[lunasdad]

Was woken up at 5am this morning with a wbm. Feeling really sick and tired as well as an increase in feeling like I have the flu. My pattern seems to be wbmevery morning, rectal pain and feeling fluish all day. My doctor called in the Dificid and this has been 4 days of wbm and increasingly feeling ill. I took a stool test yesterday and the results wont be back for 3-4 days. I am so conflicted as to what I should do. It has been almost 2 weeks since my last "normal bm" and I have felt fluish since then. Would like to hear form as many of you as I can to see what other think. Taking the Dificid means I will more than likely get an FMT which I am nervous about. I am desperate for relief.


Just an update..my doctors called in the Dificid and I have it now. I was waiting on the EIA results which came back NEGATIVE!!! Waiting on result of PCR. My last 2 times I had positive PCR and EIA. At this point I am not sure what to think because I feel awful. If the PCR comes back positive does that mean I need to treat?

[beth22]

I had positive PCR and negative EIA for over 2 years and was told not to treat. But, I did not have WD. Did you test for anything else besides c diff? I had another pathogen called campylobacter and the symptoms were the same. Others have had e coli, salmonella. If your PCR comes back negative, and your symptoms continue ask to be tested for other bacteria as well.

[lunasdad]

Seems to be a pattern for me at this point. Every morning I get woken up at 5am with pains in my stomach, gas and a lot of cramping and then I have to run to the bathroom and completely void. For the rest of the morning I feel sick and then things start to settle a bit but for the past 7 days it keeps happening. Get woken up, run to bathroom, stomach and rectal pain, then no BM for the rest of the day but feeling sick all day long. Seems like today it is actually much worse, multiple bouts of running to the bathroom pure water. Wondering if i should stop the Probiotics at night and see what happens? Just want to be able to get things moving in the right direction so I can move past this.

[Bobbie]

Lunasdad,

Check with your GI before changing anything.

Since u had IBS in the past, this might be normal. Check with GI re a fiber supplement - Benefiber, Metamucil, Citrucel.

[lunasdad]

Just wanted to get some more advice. Results of my PCR came back positive. I am still not feeling great. My GI wants to do a colonoscopy to see what else can be going on as I am still not feeling well. My last colonoscopy was done end of June, 2 weeks before my cdiff episode started. He told me that if by Monday my symptoms don't go away then it may be good idea to treat with the Dificid. Any thoughts on how you would proceed?

[beth22]

Since you have a positive PCR, but negative EIA you will have to look to your symptoms. I did not have D when I had the positive PCR. When I first turned in the sample, I had, but by the time it came back after the weekend, my D had subsided. I would have some flares, but the symptoms were tolerable and responded to Pepto Bismol, so I did not treat.

If you think that your symptoms are like when you had active c difficile and your doctor gave you Dificid, then you should consider treating. Only you know how you feel. Does the doctor want you to try the Dificid first or jump right into a colonoscopy? I personally would not do a colonoscopy if I just had one a few months ago. Ask your doctor what he thinks could have changed in 3 or 4 months.

[lunasdad]

Thanks for the advice. Basically, my doctor who is at the cutting edge of CDIFF study and research (not sure if its ok to post his name) has told me that usually if the PCR comes back positive and the EIA is negative he does not treat unless things are very severe. My GI Doc is aggressive and wants me to take the meds. Basically the last 2 days, after taking a lot of Imodium, the D has stopped and I am left with weird pains in my rectum, burning pain that always feels like I have to go. Any one else experience that? I think if I can get over that I may start to turn the corner. As far as the colonoscopy, he backed off of that.

Thanks

[brandine]

I would definitely go with the advice of your c.diff expert doctor (not the GI). My ID doctor said the same thing about not treating just because of a positive PCR. It's wonderful that you are likely turning a corner! You will probably have a lot of annoying symptoms for awhile yet, since you're still in the thick of recovery, so maybe just try not to pay too much attention to them. This is something I've really worked on for my own sanity--just kind of ignoring minor symptoms, since I know that my anxiety can take me down a dark rabbit hole and then this can make the symptoms even worse. And as others have pointed out on this site, if you really had severe c.diff again, needing treatment, it would be obvious... relentless D., not just a few watery/soft stools. I hope that you continue to feel better!

[Bobbie]

Lunasdad,

Agree with the others.

Try the three day rule.

Remember , the three day rule is not medical info but a rule of thumb to help get through the wait, watch, and worry stages of c diff.

To repeat:

Have u heard of the three-day rule? I made it up many years ago. It is a "rule of thumb" that can be helpful.

The Three Day Rule: Don't be alarmed by mild symptoms unless you have three "bad" days in a row or if your symptoms become drastically worse. If this happens, call your doctor. Please remember, this is just a guideline to use when you panic after one or two bad days and think, "Oh, IT'S back."

Relax. I know how difficult it is. Best to you.

[lunasdad]

Been trying my best to push through the last few days. Biggest issues remain the completed exhaustion I feel and upset stomach. Have not had wbm”s in a few days, rather just going small formed pieces (sorry to be gross) I’ve made some changes to my diet, gut out all gluten and cut back on sugar the best I can. I think the diet change is helping to cut back on the gas pain and bloating. Throughout this whole saga I have taken Florostar. Wondering if that can be causing problems now?

[beth22]

I did not tolerate Florastor well at all. It gave me tons of gas and looser stools and finally a rash.