Recovery Road...

[jjglad]

I realized earlier this week that I have been off of Vanco as long as I was on it! While this is something to be happy about...I just wish I felt better to go along with the milestone. I am almost 5 months into recovery and a couple months ago I started on Levsin because it did not matter what i ate...it was all going right thru me. A motility issue to say the least! A combination of Levsin and Imodium was helping me for the last couple months to stay somewhat normal. I was only going 1-2 times a day and things were pretty well formed. The last week, it is like I haven't been taking anything again...

i have been recently tested to make sure CDiff was not reoccuring. PCR test was negative last week. I have also taken a new calprotectin test (waiting for results) to see if the inflammation has come down any from my Genova lab testing from a couple months ago.

I have had to double up on Levsin (2x a day) and Imodium in order to find any sort of normalcy. I was looking into Bentonite clay as some have mentioned that here. Can anyone give a good (or bad) report on whether BENTONITE CLAY helped then in their recovery?? What brand did/do you use? How did you take it? I have seen different information about whether it is for Diarrhea or Constipation.

I would appreciate knowing what you have used and what has helped the most get you over this horrible up and down in recovery. I am still eating bland, when I do eat. I am still taking probiotics! I am just continuing to lose weight little by little as I cannot eat enough to keep that from happening. over 50 lbs. in these last 9 months is quite enough! I worthless to those around me...my husband, my kids, etc. I am SO done!
Thank you in advance for your time!

[jjglad]

I thank you all for the support you have provided over the last 9+ months! It is truly a very lonely time! I just need help in figuring out what would help keep my system slowed down enough to eat little by little again. I am just so very frustrated and tired of living like this and wondering if I can get to the store and back before having issues! It is taking quite a toll on my family! What has helped your system stay slowed down? What has helped your system digest foods properly again? If I could get those two under control I could imagine nutrients would be absorbed again, hair would quit falling out so bad, etc.!
Thank you!

[beth22]

Have you ever tried taking Questran (cholestyramine) ? It binds up toxins and carries them out - for c diff and others too. It is pretty constipating. It is a powder that you mix with water and drink, but there is a pill version of it too - Coletipol I think it is called. Amyc takes it. You might ask your doctor about it. It requires a prescription.

[jjglad]

I think I briefly tried cholestyramine during CDiff treatment, but couldn't handle the grit and dealing with applesauce. I will certainly ask GI office about the pill form. Thank you for that. I have just gotten to a point where I am never going to be "normal" again. I feel like 5 months out and still clear of CDiff, I should be seeing improvement by now...???

Oh, and I just heard from GI office to say that my latest Fecal calprotectin results were back in normal range...how can that be when I am struggling with keeping the system under control?!? I just stay in a constant state of confusion!

How long has it taken others to finally turn a corner and not need so many meds to keep things under control?? After you were cleared from CDiff. Oh the damage that has clearly been done. :( I have also ordered some liquid calcium benzonite clay and see if that helps.

[amyc]

I take two colestipol a day and treat a mast cell disorder with otc antihistamines daily and have normal guts. The meds are cheap and easy to take, I feel good, so I don't mind being on them for life. The colestipol tablets are big, but no gritty stuff.

[jjglad]

Is it the generic colestipol that you take or the brand name colestid? I am researching and some have said the the colestipol caused them D instead of helping like the colestid does? Just wondering if brand name is better here vs. the generic which causes some people a worse problem?

[amyc]

I take the generic.