Extreme abdominal pain....any suggestions

[kimber]

My son (16 years old) has just finished 28 days of vanco. This is after 2-ten day rounds of Flagyl.

Here's the problem....his D went away but pain and aches never did. (he felt better during the 1st Flagyl--but never got better after his 1st relapse) He also has general malaise and extreme fatigue. He has had sharp abdominal pain in LRQ and LLQ the entire time. Now he is starting to have those same sharp pains right below his "breast meat--for lack of a better way to describe. He has had EVERY GI test and they all look normal (for this we are thankful!)

It seems like everyone says that they started to feel better when they started vanco. He seems to have gotten worse.

He has been unable to function (part time job or school) for about a month.

3 GI doctors are beginning to think that he (or maybe I) am crazy.

Does any of this sound "normal" to anyone out there?

We don't know where to go from here!

[Connie]

I don't have any answers, but it does not sound "normal" -- of course, you already knew that. My one observation is this: when doctors can't find the reason for a complaint, some of us tend to question the KID and validity of the complaint, rather than the doctor. I have done this myself more times than I care to remember. Most times, I have lived to regret it. In general, kids do not exaggerate their pain. YOU ARE NOT CRAZY. If he is in pain and seems to have gotten worse, make the doctor find out why; if your current doctor is out of ideas, find a new one.

If you read my recent threads, you wil see that my 16-y-o son has an extensive medical history that all began with a case of c. diff (not to imply that the c. diff caused everything.) Perhaps the most notable time his complaints turned out not to be exaggerated was during the time he was hospitalized (at age 9) after his first two surgeries. His first ileal pouch had ruptured, and the surgeons were "waiting for it to heal"--which they hoped and expected would happen, and then we would be able to go home "in a couple of weeks". This went on week after week--for three months. Some of them thought he was exaggerating his pain level and illness. At one point, a doctor in charge pulled his narcotic pain meds all at once and threw him into full-blown withdrawal for half a day--until a more humane pediatrician reversed the order. When they finally opened him up a third time, they found the internal pouch was completely unsalvageable. It had been leaking and causing serious pelvic infection the entire time.

Two years later, I thought an episode of pain was just "gas pain." He suffered all night before it subsided. When it happened again a few weeks later, we ended up in the ER, and two days later in surgery to remove his gall bladder.

He has been out of school this entire year. None of his specialists have been able to figure out or remedy all his complaints. Nevertheless, they are real. The most recent piece of the puzzle we found only last Thursday is that since testing negative five years ago, he has developed allergies to many things. The week before that, he tested positive for c. diff again, which I know he had it for at least a month before being tested, possibly much longer.

All by way of saying, just because they have not yet diagnosed it, does not mean it is "nothing". Keep after them until they figure it out.

[Bobbie]

kimber,

Welcome to the site. Read the first forum ALL USERS READ THIS FIRST & its subtopics. They will guide you in using the site & answer some of the most frequent questions. Read Dr. Borody’s & Dr. McDonald’s articles and the areas in FAQ that interest you – especially FAQ-Hygiene, Nutrition, & Testing.

I agree (wholeheartedly) with Connie. Trust yourself & your child. You live this day by day. Docs. are only human (contrary to what some of them think) & can make mistakes. I've repeated this on the site many times. Doctors give an educated, experienced, expensive guess. Sometimes your "feelings" are more acccurate. We want to believe docs., however, because this is why we pay them. Sometimes they are right; sometimes they are wrong.

Was your son on Vanco. or Flagyl when he was tested.? This could negate the results of the tests.

I am familiar with C. diff. but am not a doc. or an "expert." My knowledge is from the School of Hard Knocks. My son had C. diff. at the age of 4 (l979) and again about 6 yrs. later. I've had it twice (the lst time for 4 yrs. - l993-l997; few docs. believed me because I seldom had positive tests but was on Vanco. many of the times I was tested -- & the docs. knew it). I had C. diff. again in l999.

I wound up with IBS & some days still have a lot of pain. Could your son possibly have IBS? The symtoms are similar are it's difficult to tell the difference. See FAQ-The Three Day Rule. Best way to tell the diff. is through stool cultures or a colonscopy -- but only after being off Vanco. (or Flagyl) or 10 to 14 (14 days).

Trust your instincts. Almost everyone with C. diff. (or a loved one with C. diff.) feels they are "going crazy" when the disease persists & docs. can't figure out what to do.

If your son wasn't off Vanco. (as mentioned above), I'd ask he be retested.

[kimber]

Connie,

Thanks for your response. You know that a Mom just knows when something is not "right". It has been very frustrating when the doctors cannot find a reason for his pain and thus do nothing.

I am so sorry to hear that your son is having trouble with c-diff again...combined with other issues.

Jacob has allergies to several medications and is very sensitive to many more. I understand how scary that can be.

I will keep Thomas in my prayers.

[diane]

Just for the heck of it have you tried gas-x.. I too had terrible pain and that helped alot!

[nsewell]

I agree with Diane try gas-x, also maybe a heating pad. Those are the two things that saved me.