my son is not getting better

[kimber]

My son (16 years old) was diagnosed with C-diff on March 1st.

He did 10 days of Flagyl and 6 days later--diarreah and abdominal pain were back. They did another 10 days of Flagyl. Diarreah was gone, but pain never went away.

He had a colonoscopy which showed little white spots that were encircled with a red ring. The pathology showed colitis in the descending colon--but no evidence of inflammatory bowel disease. They started him on Vancomycin for 28 days and did a CT scan, blood work, and stool cultures. Everything was normal.

Today he finished day 14 of Vanco. His pain is still quite severe.

Usually, if he is sitting still, his pain is not bad. But, sometimes it is sharp in lower quadrants even when sitting. He cannot stand up straight without lots of pain. But, more troubling than the pain is the overwhelming "yucky feeling"

We are seeing second GI tomorrow. Former GI was baffled by the amount of pain that he is in. Everything that I have read suggests that pain is gone while on meds and may come back when meds are stopped. ANY suggestions? Does that sort of pain seem normal or not?

[Christina]

Hi and welcome to the site. Sorry your son is dealing with this nasty illness as it certainly is not fun. There is lots of good info. on the site if you search around. FAQ's and Dr. Borody's article are good places to start.
As for the pain most of us have had it and still had it even on treatment. It may be that the courses of meds. are not long enough or not at high enough doses but even once C-diff is gone some still have lingering pain for quite some time. Most Dr.'s prescribe longer courses of Vanco or Flagyl once you have had more than 1 relapse and many suggest a tapering dose (usually around 6 weeks long or so)as the next step. It's good that he will be seeing a new GI Dr. and hopefully he will have some more ideas as to what your son should try next.

Please keep us posted and good luck w/ the new DR.

[supersmurf]

Hi Kimber,

Sorry to hear your son is having such a tough time. Hope your second doc is able to help.
When I had active c-diff I really found that I was very sensitive to a lot of foods that had never bothered me before. Is it possible that maybe your son is eating something that is causing his pain to be much worse? For many with c-diff (and even after) things such as processed foods, dairy, wheat and sugar give grief.
Also, I found that sometimes a hot water bottle could help with the pain.
Good luck to you and your son,
Supersmurf

[Sheila1]

kimber,
SO sorry you and your son are dealing with this yet again. Supersmurf and Christina gave you excellent things to check on. I only wanted to add my own emphatic "absolutely, positively, pain can continue!!" For me, significant pain continued for a few months and was my biggest fight with the doctor. It was primarily in specific 'lump' like areas (could not be felt through my abdomen though) and with my last relapse they became more diffuse and while on Questran they began to dissipate. After 2 months of Questran they were almost entirely gone.

Have you read Dr. McDonald's article to see the generally suggested medicine and dosage plans? Some very good treatment info. in that article and several others in that section, you can compare your son's plan with recommended regimens.

In my own case, I believe the pain problem was because I was not on a high enough dose of Vanco to properly rid the bacteria and toxin and thereby causing continued issues; I didn't know then what I've learned since.

I know it's heartbreaking and frustrating to see your son go through this for so long and feeling helpless to ease his pain. I highly encourage you to read the article by Dr. McDonald (in FAQ, Articles by Experts), make some notes and have a very thorough discussion with the new doc. This will help you feel a little more in control and helpful too. Keep in very close touch with his doctor - pursue and press as much as needed to obtain the help your son needs.

Praying the new doctor will have a good heart and a good plan! Do keep us posted - and hang in there, it will get better. Truly.