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Possibly Crohn's?

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Crohn's Disease
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Posted 8/30/2012 6:52 PM (GMT 0)
New to this forum today....Long story short, my 17-y/o son nearly severed his finger off on 5/19/12. Had to have surgery for repair, pinning, etc., and was given 2 antibiotics at that time, Keflex and Bactrim. He has had diarrhea since. Went to the trouble of 2 rounds of stool tests, neither of which showed C-Diff. Treated once in July with 7 days of Flagyl and his frequency was decreased; went off of it, it came storming back. Went to GI beginning of August who gave him 3 weeks of Flagyl, and he still isn't better. GI called and wants him in for a colonoscopy, suspects Crohn's. My husband does have a 1st cousin (a girl) who has Crohn's and there is a LOT of rheumatoid arthritis on his side of the family (in his mother and more).

I'm finding it incredibly ironic that Crohn's would develop just out of the blue and I'm convinced that the original 2 antibiotics he was put on for the "dirty wound" and to cover the "hospital stuff" ate his good bacteria and left him susceptible to C-Diff. However, I'm not ruling out that while in the process of killing his good bacteria, it's possible that he never has had C-Diff and he may have developed a secondary problem such as Crohn's. I can't get anyone to admit that it had anything to do with the initial round of antibiotics, however. They will tell me that antibiotics won't cause Crohn's, which I get....BUT....when antibiotics eat good bacteria in the gut and there's nothing left to fight the bad bacteria, well......

Suffice it to say, he's miserable. He's thrilled that he's lost about 30-40 pounds, but other than that, he has horrible urgency and I feel sorry for him. He will get stomach cramps and if he doesn't get to the bathroom immediately, he'll have an accident. He's carrying a container of wipes in his vehicle so if he has to get out on the side of the road and into a field to go to the bathroom ASAP, he has something with him. Pathetic...

Am I, by chance, telling anyone elses story and if so, can you elaborate on here and do you have any advice?
Posted 8/30/2012 7:49 PM (GMT 0)
That can be so hard. I'm sorry for your son. No one can tell you what causes CD, but 6 months before CD symptoms started happening, I was given too many antibiotics and got c-diff. I think some people are more susceptible than others to having their plumbing get all messed up.

Symptoms of c-diff and CD and UC (ulcerative colitis) kind of mimic each other. I would strongly suggest he get a colonoscopy or even swallow a pill cam that will take pictures of his insides as it goes throughout his digestive system.

Also, have you thought about having him take probiotics? You can buy them over-the-counter in pills, which is ok, but those ones are dead cultures. You can get some liquid probiotics over the counter or from a GI, which are better because they are live cultures. Some yogurts are made specifically with extra probiotics that are live cultures. (Basically, if it has to be refrigerated it's better than the OTC pills.) These can all help regulate his gut. But again, I think a colonoscopy is a good idea.

Best of luck!
Posted 8/30/2012 9:19 PM (GMT 0)
Thanks for responding....I've given him Florastor since the end of July, but it's not done a thing for him. He's still taking it, 2 pills once a day as a therapeutic dose. I was giving him some other probiotics prior to that time for nearly 3 weeks, but they weren't near as "potent" so-to-speak as these are. We'll get through it, but I'm frustrated for him. He seems to be handling it okay, except in the rare instance he nearly has an accident and has to stop alongside the road. Even at that, he's been a trooper...to compound his issues, he's nearly 7'0" tall and with this bum finger that still isn't working 100%, sometimes he can't get his pants undone timely enough to avoid the inevitable. I think if we could just get the insane urgency stopped, he'd be thrilled with that. Coincidentally, we tried Imodium just by itself after the first set of stool cultures came back negative, because he had diarrhea so bad while we were on our summer vacation. That worked about a day, but then he felt like it was worse....in other words, he had to go, but with the Imodium on board, he couldn't go. Sooooo, we stopped that because he felt like he had worse stomach cramps and knew he had to go but couldn't! Now I can't get him to try it again, but unfortunately, he may not have a choice. Also, since we can't get him in for the colonoscopy for another 2.5 weeks, I've begged the GI specialist for something else to give him empirically until that time (to slow this down). I don't think a colon prep will be a problem for him at all...he can't keep anything in his body anyway!
Posted 8/31/2012 3:17 AM (GMT 0)
Poor guy. Maybe he should try a lesser amount of Immodium for now - 1/2 pill every other day or a 1/4 dose of the liquid twice a day, so his bowel doesn't slow down so much. Since there are other things that could cause his symptoms, other than Crohn's, a colonscopy is a good idea. If it is Crohn's, at least he can start treatment before it gets severe. If he hasn't been feverish and/or been vomiting, that's a good sign - it may be brought under control with predisone, and then a maintenance med like Asocol. Or maybe it's just a bad case of irritable bowel syndrome. Best of luck to him.
Posted 8/31/2012 6:28 AM (GMT 0)
I also took Bactrim DS for 3 years to combat acne. After a few months of stopping it I developed mild proctitis. I was initially diagnosed with UC but my diagnosis has since changed to possibly Crohns. I do strongly believe the antibiotics cleared my good bacteria and left the bad ones.

I also had the majority of my stool tests come back negative for C.Diff, however I did have one sample test positive for the culture but it had no toxins (doctor says that was a false positive).

My symptoms aren't as severe as your son's appear to be (I have occasional urgency which I am able to control, abdominal aches and loose stools, but I still go 2-3 times a day and my weight has been stable).

A colonoscopy would definitely be in order for your son given his history and current symptoms. Crohns is treatable if that is indeed what your son has. Might be good idea to prepare a list of questions for the doctor when you guys see him next.
Posted 9/1/2012 3:56 AM (GMT 0)
I have has Crohn's for a long time. I got C-diff from antibiotics for a sinus infection. Was told to take probiotics, specifically Culturelle. Well, it made my diarrhea 59 times worse. Didn't look up the contents of Florastor but you might want to consider it as a factor in the problem your son is having.
Posted 9/18/2012 6:52 PM (GMT 0)
UPDATE: Colonoscopy completed yesterday. Initial dx is ulcerative colitis. I'm a bit confused, as I was under the assumption that this had to be proven with biopsies and not just by the naked eye. Biopsies were taken, as well as stool for c-difficile (again). Dr. put him on Lialda 2.4 mg daily (2 - 1.2 mg pills in the a.m.). UC is an autoimmune disorder, sister of Crohn's as I'm told. At this point, until we get the biopsies back, I don't think we know for sure what he has. Secondly, even though it might be this autoimmune disorder, I'm still convinced that the initial cause was from the 2 antibiotics he was on in May. I feel like some sort of dietary changes need to take place, not just treatment with this medicine. I don't know.....it's just what my heart tells me as his mom.
Posted 9/18/2012 9:38 PM (GMT 0)
Hi @colbran. Wow, I'm so sorry for what your son has been going through.

A little over two years ago I was given antibiotics that led to c. diff. It was cleared up fine, but then 6 months later I began to have D over 20 times/day with bleeding. Thinking it was c. diff., we didn't do a colonoscopy for a while. After two months of this I was diagnosed with UC. The diagnosis was changed to CD this year because of a rectovaginal fistula and previous strictures in my esophagus that needed dilating a few years prior (we thought I just had bad reflux).

I've had 3 flares of c. diff. just in the last six months, so I can understand the pain and frustration that you and your son are feeling. You're exactly right: these are autoimmune disorders BUT are usually triggered by something like c. diff., stomach bugs, etc. Mine was not just from the c. diff. but also from when I got parasites while living in the Dominican Republic a few years prior. Our bodies are more susceptible but usually a trigger is required. Unfortunately, there's no way to exactly say what the trigger was or that it was anyone's fault.

UC and CD are very similar. The treatments for the two really don't change much. UC is a bit better - it stays in the large intestine for the most part. CD can be anywhere from mouth to anus, and goes outside of the lining in the colon or other areas (fistulas - tears in the lining walls). I sincerely hope that your son "just" has UC. (Please know that there is a separate UC forum as well - not that we're trying to get rid of you at all!!!)

Diet plays a big roll for IBS. Each person is really different, though. I would strongly suggest keeping a food journal - have him write down everything he eats and also what his BMs (bowel movements) and other symptoms are like. You may see a pattern. Some of the most common foods that can cause problems during a flare are milk products, gluten products, and high fiber foods.

Also, probiotics are really a good idea. Keep it up with them. I've found that probiotics that need to be refrigerated are actually the best. The pills contain more dead cultures, while those refrigerated are live cultures of bacteria. I personally like VSL #3. I take it in the powder that I keep in the fridge, and I mix it with yogurt that also contains live cultures (yogurt is great for that). I'm not sure where you can get it, since I just started it and my GI gave me several packets to start with. I just take one packet a day, but when in a flare or with c. diff. you might have your son do 2-4 packets per day.

I hope this helps. Everyone is so different with their condition, and unfortunately a lot is trial and error. Please keep us posted! Thoughts and prayers are with you.
Posted 9/18/2012 9:46 PM (GMT 0)
Thanks so much scifigal2k....I really appreciate your help! You're not the first person to mention the VSL #3, so I may have to look into that. I just got him the GI Monitor app for his phone. I figure if he's in the bathroom having one of his many BM's, he may as well record the consistency, blood or not, etc.! LOL...he'll be calling me any minute asking me about this, I'm sure, as it automatically loaded to his phone!

I think my best "audience" are you people....those of you who actually have the UC or CD. The knowledge that you provide IMO far outweighs what a physician or anyone else can tell me....if you've experienced it, you're the best "physician" in my mind! I'm gaining a whole heck of a lot from reading these forums, and I'm so grateful people are honest and forthcoming with their ideas and input. I'm not knocking the MD, but I'm certain we'll figure out on our own (with the help of people like you) how to get this under control, so-to-speak. If I research it to the death, I'll be able to provide him with every source I can think of, rather than relying on just the MD. That's my job, I'm his mom!

Will keep you posted...biopsies to be back next Monday, so will know more then. Thx!!
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