Son (age 17) just diagnosed yesterday

[colbran]

with ulcerative colitis via a colonoscopy. Here is his story:

Had an accident in May and nearly severed 1 of 3 injured fingers off. Surgeon who repaired/reattached the finger put him on 2 antibiotics, 1 for the dirty wound and 1 for the "hospital stuff" as he quoted. His diarrhea started within days of starting this medication on 5/19/12. Shame on me for not implementing probiotics when he started these. I blame myself for that, I should've known.

Long story short, had stool tests and no C-Diff showed up. Tried just Imodium but it made him worse. He had to go, but then he couldn't go because this stopped him up, so his abdominal pain was worse. Stopped the Imodium and of course the diarrhea continued.

Had a course of 3 sets of stool tests again for C-Diff, O&P, C&S, etc., nothing showed up. He was treated empirically with 1 week of Flagyl and it seemed to help some. As soon as he was off this, his diarrhea was back as before.

Saw the GI specialist the first part of August who listened to his story and he tried 3 weeks of Flagyl with no results. Thus, his colonoscopy yesterday where GI doc apparently saw ulcerative colitis but also took biopsies as well which won't be back for a week.

GI doc started him on Lialda yesterday, 2 pills q.day, 2.4 mg. Son is feeling horrible at this point, still has diarrhea horribly, but I assume this is post-colonoscopy and it will take a few days to come around. I mean, he hasn't had a solid BM since May, so this really isn't any different for him other than that he has cramps and of course, he's raw.

I'm angry....it is my belief that those antibiotics wrecked his gut. They depleted his good gut flora and there was nothing there to protect him, thus, we've developed this secondary huge problem. Of course, no one will admit that antibiotics started this process. Heaven forbid...

I'm venting and I realize this...I'm torn between giving him this drug and trying a SCD or something along those lines to help him out. Mostly, I'm angry that he has to now potentially deal with this the rest of his life and it could've possibly been prevented. Obviously, who would argue with a surgeon who was trying to save his finger? I get that...however, how come no one ever tells you that you should throw a probiotic on board at the same time or give you any advice along those lines how to prevent something such as this? Ughhh....

Enough already....time to grab a hold and get this figured out for him. Any thoughts, comments? I realize I'm posting a tad early since biopsy results aren't back, but man, this has been taking forever...4 months of diarrhea with no results. He's a great kid and he's tolerating it very well, but wow, sucks to be a 17-y/o boy in his senior year of HS who has to use the bathroom in the matter of seconds or he'll have an accident.

Thanks in advance for your comments!

 

[Clash]

So sorry for everything that your son has had to go through. My son, 15, was diagnosed in February of this year with Crohn's disease, the disease was active in his terminal ileum and we were put on remicade straight away. It made such a huge difference right out of the gate and I am so thankful for the relief he was able to get with it. The 8 week stretch between infusions may be to long for him as he started with symptoms while waiting for the first infusion after the loading doses and again the second time so we have upped his dose and shortened his schedule. My son was taking doxycycline at the time all of his symptoms began, he was taking it for acne. I have oftened wondered is that what possibly triggered the flare that put us on our journey to a dx.

You should browse through our parents forum as well as the treatment and diet/supplement forum. There are many threads on SCD in the diet forum as well as some other diets posters have tried.

I hope he his feeling better soon and able to achieve remission soon!

 

[colbran]

You should browse through our parents forum as well as the treatment and diet/supplement forum. There are many threads on SCD in the diet forum as well as some other diets posters have tried.

I hope he his feeling better soon and able to achieve remission soon!

Thanks for the response, Clash! Interestingly, my husband's 1st cousin has Crohn's (now age 35, dx at age 15) and she was taking Accutane at the time. They, too, are convinced that this is what caused it. I realize there is some proof that Crohn's is hereditary, and as a matter of fact, is closely related to other things like rheumatoid arthritis, etc. There is a HUGE family history of those things on my husband's side of the family, not yet in my husband, however. I'm not saying that my son couldn't have developed this at some point anyway because of family history, but I think the wrecking of his gut started all of this. This is a kid who NEVER gets sick, hardly ever has been on antibiotics, etc. Then all of a sudden, this? Wow...too ironic for me.

I have been on the "Diet" section of this website already, and there are very interesting topics there. I think with a little research, I'm going to get a lot out of this site for him. Whatever I can do to help him out...thanks again, and good luck to you as well!

 

[David]

Hi Colbran and welcome to the community. I'm so sorry to hear about your son, that's absolutely horrible. I can feel how much you love him and how worried you are. My heart goes out to you and your entire family.

First off, I'd suggest setting up shop in our Parents of Kids with IBD section. The parents there are amazing and know exactly what you're going through.

Second, did you tell your GI about all the autoimmune stuff/Crohn's that runs in your husband's family?

Third, do you know the name of the two antibiotics that your son was given by the hand surgeon?

For most people, Lialda has very little side effects and if it is indeed Ulcerative Colitis, it'll likely help. If it was me, I would hit his disease from all angles. Use the western medication, make dietary changes such as the SCD, and there is a ton of other information/treatment options you'll find here.

Please keep us updated as to how your son is doing and let us know what the biopsy results say.

 

[colbran]

First off, I'd suggest setting up shop in our Parents of Kids with IBD section[/URL]. The parents there are amazing and know exactly what you're going through.

Second, did you tell your GI about all the autoimmune stuff/Crohn's that runs in your husband's family?

Third, do you know the name of the two antibiotics that your son was given by the hand surgeon?

Thanks for the tips...I will check the parents section.

Second, yes, the GI doc knows about Crohn's in the one 1st cousin and the rheumatoid arthritis that runs rampant.

Third, I believe Keflex and Bactrim DS were the 2 antibiotics he was on in combination.

The biopsies sent out are going to be back Monday. I did also note that he sent stool out again for C-difficile, so GI must still have that concern, as this is what originally it was felt to be.

I am told that UC can't be diagnosed by just the "look" of the colonoscopy...is this true? The biopsies will have to determine that?

 

[Tesscorm]

Hi colbran,

I'm so sorry you've had to find your way here because of your son's illness! My son is 18 and was diagnosed with Crohn's just before turning 17.

Try not to dwell too much of what may have been the trigger. Like your son, my son was rarely sick prior to his diagnosis. Without getting into too much detail, for months prior to my son's diagnosis, he was taking 12 to 15 ibuprofens per month for back pain. I've since learned that ibuprofens can cause GI issues. For a long time, I beat myself up for not questioning his GP more, questioning if they could cause problems, what if I hadn't let him take them, why didn't his GP warn us, why did I let him continue playing a sport that caused injury and on and on. I spoke to his GI and his answer was that if he was predisposed to develop Crohns, 'something' would have triggered it at 'some time'. In reality, his back pain may have been an EIM (extra intestinal manifestation) of his crohns, i.e. an early symptom, in which case the Crohns was there before the ibuprofens. In your son's case, the antibiotics truly may be unrelated and, in any event, there is absolutely no way you could have foreseen any consequence. :ghug:

Since my son's initial flare was brought under control (using Enteral Nutrition), he has been, for the most part, done well. He regained all his lost weight, went back to school, back to his hockey, back to all regular activities. While he periodically has some 'off' days and he continues to use EN as his maintenance (formula through an NG tube 5 nights/week), he has taken it in stride so far.

My son's treatment has been Enteral Nutrition (both to induce remission and then, at a lower dose to maintain), which is a safe treatment with no side effects, provides bowel rest and all necessary nutrition. Unfortunately, I'm not sure if it is as successful at inducing remission in UC as it is in Crohns??? There's quite a bit of info on EN in the Treatment section.

Please do have a look through the Parents forum - there are many very knowledgeable parents who will be able to answer your questions, understand your worries and frustrations and always ready to offer their support!

I hope your son is feeling better soon and can get back to all his usual activities soon!!! Please let us know how he's getting along! :ghug: