17-y/o just diagnosed yesterday

The biopsies taken during the c-scope will be the firm diagnosis, but UC generally has a "look" to it that docs see during c-scopes. So unfortunately, he probably does have it.

And yes, UC is autoimmune, but something has to trigger it, and antibiotics can definitely do that. I also think (as do many who research UC) there's a gut flora component to UC,. Perhaps the wrecked gut flora triggers the immune system to attack the colon.

And please, quit blaming yourself. It's quite possible that even if you had put him on a probiotic with this injury he'd still have gotten UC at some point down the road.

Personally, I'd use the Lialda. And a mesalamine-based rectal med. And a probiotic. And, if you want, diet in conjunction with all of that.

Hi sorry he is feeling so poorly. If he isn't taking probiotics yet, get him on some. Ask for rectal meds too. As for his Lialda he is on a maintenance dose and hopefully the GI will increase him to 4 pills a day. I only take 2 when I am in remission. Keep us posted on how he is and what the biopsies say.

Colbran,

Welcome to the forum.

Sorry to hear about your son's story and his resulting diagnosis.

Please stop blaming yourself and bearing the brunt of this, you were in an emergency situation (saving fingers) and it's hard in that mindset to think of longterm consequences and ramifications of all involved.

I know it's tough, and UC is a tough disease to deal with.

Thankfully, you're smart to ask the right questions now, and see what you can now do to be proactive - and I'm sure you will be successful in that endeavor.

IMO, no it's never too late to start probiotics. But they take time to normalize the gut, especially after the antibiotics. I would recommend VSL #3 or better yet, have you doc prescribe VSL #3 DS ( 3 sachets per day) and it might be covered by a small copay.

VSL is especially formulated for UC, with 450 BILLION active cultures, and the DS with 900 Billion active cultures.

I would also recommend you look into certain supplements: slippery elm powder, L-glutamine amino acid powder, diet modification as in going gluten and dairy free, and LDN, low dose naltrexone.

However, now that your son has this disease, there are things IMO that you can help him implement, which will have a direct impact on his disease, the symptoms he will  experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Oh, and one more thing:

Saw the surgeon today who said he'd really like to see him on an anti-inflammatory for his finger, which I expressed was going to be a problem because of this new finding of UC...I just read in your post about:

14) Astaxanthin is a great anti-inflammatory.

I will check that out too, as the finger still isn't completely healed!! LOL...add that to the list!

Thanks garylouisville...I think the c-diff test will also be done with these biopsies. I saw that on his report, that there must have been stool there to test? Something like that...thanks for your kind words!

Regarding the probiotics. Its something you will need to play with. Some seem to do nothing, some can make you feel worse and some make you feel a whole lot better but its definetely the way to go with replacing the good bacteria in his gut. :)

Probiotics have helped me, but not given me remission. (It seems that for may just getting the balance back is not enough. Some other change has occurred.) I firmly believe that massive IV-antibiotics I got when I was septic after a bowel perforation gave me UC. The symptoms started and grew continuously during the months after I got out of the hospital.

But lots of people get IV antibiotics, and only a small percentage get UC. I have learned that a genetic susceptibility is also needed. Maybe less susceptibility if the trigger is very strong - like min was. But, it is not the antibiotics alone.

I guess in your sons case he could have gotten along without the fingers. I could not have survived the sepsis without the antibiotics. Probiorics taken with antibiotics help very little because they get killed each day. They did give me probiotic capsules when I was in the hospital.

I suppose if they had known my susceptibility (possible from the kind of genome sequencing that will be broadly available in jsut a few years) they could have prescribed much more aggressive probiotic therapy continuing for weeks or months after I stopped the antibiotics. But that is hindsight. I now play the cards I was dealt. I guess I am saying not to beat yourself up too much about any hindsight regarding earlier use of probiotics. You could not have known of your son;s predisposition for colitis, and he might have died of infection if he had not gotten the antibiotics. He had very bad wounds.

It is less clear that diet is a possible cure, but there is some evidence that more plant-based diets help maintain remission. Also without the helpful bacteria to aid digestion, many common foods can provoke reactions that add to symptoms (i.e., more diarrhea, gas, bloating..). IMO, even relief of symptoms is worth some diet changes.

Lialda helped me, just did not give me full remission - at least not yet. There is fairly good c-scope evidence that it cleared the ulcers in my right and transverse colon over an 18 month period between scopings. It is not as good getting to the left side. Unless there is a rare allergic reaction it seems to be safe and well tolerated.

I hope your son gets some management or even remission soon. It may take a short term course of steroids to put him on the right track.

Thanks for the clarification. I've never had a colonoscopy before and this was his 1st on Monday....I'm sure he would have trouble snapping out of this and having normal BM's because of the procedure (and despite being on the Lialda), but up until this point, he has the same pattern as he did before the procedure, maybe worse. And then to top it off, his mornings are the roughest and his first teacher (a male) just looks at him and says, "Well, you're late again." My patience for this is waning....a little compassion wouldn't kill this guy! I already emailed him and gave him the heads up, and the attendance secretary at school knows and actually suffers from IBD, so she totally gets it. But this guy? Wow...what a jerk!

I also want to stress again that if it does come back as UC, I STRONGLY urge you to ask his doctor about mesalamine retention enemas in conjunction with the Lialda and whatever else you decide. I know it'll likely be tough talking a 17 year old into using these, but they generally make a world of difference. There's a lot of research out there showing that those who use them in conjunction with oral meds gain remission more quickly than those only using oral meds. And, those who use them twice weekly when in remission (again, in conjunction with oral meds) stay in remission longer than those only on oral meds.

InSoFla, I'm impressed...you have a wealth of knowledge and I've printed out all your posts so I have reference. I appreciate it, a LOT! I found a grass fed drop-off about 45 miles from me....not super convenient, but when and if that time comes, I'll know where to get it. I checked the eatwild and found it.

I should probably figure out this VSL #3....you said you got your doc to write a prescription for it? Or someone said that....I would just assume my insurance wouldn't pay for it. I am going to try the pharmacy I use most though and see if they carry this. I'm interested to know...I thought the Florastor he was using had a lot of active cultures, but it's in a bottle at room temperature and appears to have less than the VSL. He was taking 2 of them, but it still didn't match up to VSL.

I am in the process of having this problem put into a 504, I got on that this morning already. He's tired of being late and then hearing about it...he knows, he knows. Time to shut that door. I had no idea the 504 could have this on it, but now I know after reading the parents forum.

Someone above asked me what antibiotics he took when he hurt his finger...If I'm not mistaken, it was Keflex and Bactrim DS in combination, 10-14 days worth. Now that I think about it, there were times when he was so tired and he would nap, that I chalked it up to just his injury and what he went through....he would wake up in a full sweat having soaked his clothes, like he had a fever. I'm not so sure he wasn't fighting a true infection or something else was going on that just wasn't right. He never complained a bit about it, but in retrospect, some things like that are coming back into my memory from this past 4 months. Someone else asked me or mentioned that he could've lived without his fingers...yes, that's true, but of course it's his index finger on his dominant hand, and the 3rd and 4th fingers. There were times after his surgery and in his recovery period weeks after where it hurt so bad that he told me he would be a lot better off if he just didn't have his fingers....that was the kind of pain he was dealing with. Wow...look at him now. Fingers are all there and doing pretty well, but the UC reared its ugly head. I guess the family history of my husband having a 1st cousin with Crohn's (female) and the severe history of rheumatoid arthritis in the family (husband's mom, husband's grandfather and at least 2 of her aunts, really, really bad) may have something to do with this. There are also 2 of husband's mom's uncles with colon problems...don't know what, but problems nonetheless.

So, I do medical transcription for a living. I'm at my computer 80% of the day at least, doing my work. It gives me time to research this and get educated, more than what my transcription gives me. Like I said before....there is no better information than what comes from people in this forum, what works and what doesn't for some. It is a far better resource than just an MD who has their particular route to follow, but hasn't actually experienced it. I'm appreciating this forum more and more and I thank you all for your posts!

Thanks lemonhead...I think dairy might be a trigger (which will suck for him because he's a HUGE milk drinker, HUGE), but since he hasn't had ANY control for 4 months, it's hard to actually say. I haven't been able to narrow down anything up to this point. I took the advice of InSoFla and got him the GI monitor app for his phone, so when he's having a BM, he can just whip out his phone and give it the characteristics, time stamp, etc., which will help. If he does a good job at keeping track of his food intake too, hopefully at some point we'll be able to narrow this down. At this juncture, he doesn't want to eat anything at all because it just makes him have to go...sadly. And it's much worse since his colonoscopy Monday...I know, it's too early after that to be back to "normal", or at least back to HIS normal. Thx again!

InSoFla said...
I would recommend VSL #3 or better yet, have you doc prescribe VSL #3 DS ( 3 sachets per day) and it might be covered by a small copay.
VSL is especially formulated for UC, with 450 BILLION active cultures, and the DS with 900 Billion active cultures.

Wow, InSoFla...checked into these from just the local WalMart Pharmacy? $146.77 for 20 packets, $60.34 for 60 capsules is what she told me...yikes on the sachets!! I may be using the link you provided in your post I photocopied with all the good info in it!!