First Flare up

[JLOptimistic]

Hi,

I've been reading this forum for a while but this is my first post.

My son was diagnosed with Colitis last December at the age of 10. It first started with severe pain in his right hip joint in April last year that hospitalized him for 2 days. They kept asking about fevers, rashes etc. of which he had none. Literally, he was completely fine/healthy aside from the extreme pain. He had x-Rays, MRI and ultrasounds done and they eventually chalked it up to indeterminate cause after ruling everything else out(can't remember the official medical term). After that he would have intermittent pain in his right knee or ankle. Never enough to bring him back in as it would last for a short time and be resolved with a single dose of Advil. We finally got in to see a paediatrician who put him on Nalproxene until he got in to see the rheumatologist. He was on it for a few days and started getting bloody diarrhea so stopped it immediately after taking him to ER. He was then referred to the GI clinic. She wanted him to try the Nalproxene again but with a stomach coater medication on an as needed basis. He took it once more in the middle of the night when he couldn't sleep from the joint pain and there was blood again. This was when I made the connection between the Nalproxene and Advil both being anti-inflammatories. He then had a sigmoidoscopy that showed some inflammation but she couldn't tell if it was acute or not so scheduled an endoscopy and colonoscopy. Saw some inflammation in the colon but couldn't go as far as his prep hadn't cleaned him out completely. She classified it as indeterminate colitis after looking at the biopsy results. She put him on Salofalk and as soon as I started upping the dose(started off at low dose and work up) he got cramping and bloody diarrhea. I phoned the on call nurse as it was a Friday who said to take him off it and start him on Prednisone. To be honest, I freaked as it seemed like a huge jump for a kid that was still in his 50th percentile and was showing no symptoms when not on medication. I was scheduled to see the GI Dr in about a month later in December so kept him off medications until we saw her. Met with her and she did agree that she wouldn't have put him on it either given his lack of symptoms. She said she'd leave it as status quo for now and follow up in 6 months. She still felt he had IBD but I was optimistic that she had misdiagnosed.
Symptom free into the new year. He even auditioned for and made a singing/dancing group in January. In February he started getting bloody diarrhea. Phoned the doctor, he got blood work done but no change to his scheduled appt in May. Lasted for a week and then resolved on its own. Week of April 22, he starts getting it again. Saw the Dr. On May 4, where she subscribed Mezavant as she didn't want to eliminate an entire course of medication before moving on to the next levels and wanted to try a different 5-ASA one more time. . I hated the idea of him being on medication so I did wait a week before putting him on it. Right before he started it, the blood had stopped and his diarrhea seemed to be lessening. He seemed fine on the 1 pill a day but as soon as I took him to 2 the blood came back. Phoned the doctor last Tuesday and was told to take him down to 1 again for a few days and then take him back up to 2 this weekend. He's still on 1 as he still has blood. Phoning the Dr. On Monday.
Throughout all this, he's still been going to rehearsals but had to be picked up early last weekend.

This past Friday, he missed rehearsal due to the bathroom and I emailed to say that he had food poisoning and was throwing up as my son didn't want me to tell them. He then felt better yesterday but still wasn't able to go. The group director has asked to meet with me today. I'll be letting them know what's going on and if they haven't decided to pull him, I likely will be as this is too up in the air right now. They perform in July at a major show for 10 days and I was hoping he'd be good until then. Guess not. I know it's superficial but it breaks my heart as he was sooo excited about being in the show this year and this just feels like the start of all the things he's going to end up missing out on because of this stupid disease.

I'm a single mom who just feels angry and heartbroken and fearful and sad and alone in this. We're living with my parents right now, thankfully as I've been missing so much work with him staying home. It's hard as you read all this conflicting information and my mom is very much into natural remedies so there's that pressure as well. My dad and most of the family doesn't know. My father goes into worst case scenario with everything so I don't need the added stress.

Sorry for the long post/vent. I'm just so tired and am crying as I write this. I try to tell myself that we've only been dealing with this for a short time but it already feels like forever. Especially now that he won't be performing and this is the first major thing that's been affected because of this disease.

 

[my little penguin]

Sorry for the non dx
5-Asa are basically useless if it's crohns as a monotherapy

Since they only treat the top layer of the intestine
Crohns affects all layers
Has he had a pill cam ?
I understand you don't want your child on meds
But honestly if the wound that was causing the blood was on the outside you wouldn't leave keep opening up again and again to bleed

The intestine is like a flexible garden hose
Each time he is bleeding or cramping etc the inflammation is going on in the inside this heals and leaves scar tissue or narrowing of the hose
Too many times if this and the flexible hose turns to solid PVC pipe ( leading to obstructions ,fistula and structuring )
Crohns that is untreated can be deadly - Crohnsinct can post more on that
Under treated Ibd is not much better
I understand your kiddo doesn't look sick and is still growing etc
But that doesn't mean damage isn't being done on the inside
Clash can post more on that

Mehita and jmrogers can explain more on their experience as well

My kiddo was dx at age 7
And is now 12 as well

Good luck

 

[crohnsinct]

Hi and welcome! I can totally relate to the freaking out father and natural mother!

MLP is right. I can attest to the fact that un or undertreated disease can turn deadly fast. They figure my older daughter had the disease for about two years before her first major flare. Basically asymptomatic...stalled growth and weight gain and maybe a few minor episodes of blood but otherwise a perfectly normal 12 year old girl. She was a competitive swimmer and runner. Her times were slowing but who knew.

Her first flare was awful. It lasted two weeks and landed her in the ICU fighting for her life. The GI explained that the disease was silently doing it's damage all along.

Fast forward to my next daughter dx'd at 11. She has mild, mild disease. We have been conservatively treating her with Methotrexate, Exclusive Enteral Nutrition and diet. Her last scopes and testing shows the disease hasn't gotten worse but it hasn't gotten better either. The GI has said it is time to escalate therapy. You don't want the disease making a home and running the risk of a repeat of her sister's experience. Add to that the fact that untreated inflammation is a risk factor in colon cancer. So we have recently escalated to Remicade.

I also totally understand about the disappointments. My daughter was a USA swimmer and runs track. She has had to sit out of championships etc. She dreamed of running for an NCAA division 1 school. This year has been tough. Maybe it was Crohn's maybe just an injury (hip joint pain). Either way you cut it her recruiting prospects are gone. Further, she is second guessing many of her college choices as she can't navigate the campuses. Yes, the disease took some stuff away from her. However, we choose to concentrate on all the things she did get to do. I was a dancer when I was younger. Broadway bound. However, an injury and surgery took that dream away from me. It totally and completely sucks and is heartbreaking but like I said, we try to concentrate on all the things we can do.

This said, the disappointments seem to be concentrated at the beginning of the disease journey. Once you have a solid dx and a med plan, the kids hit their stride and nothing stops them. Sure there are set backs and adjustments but then they are back on track. Once this pesky hip issue is figured out, my daughter fully plans on attending one of those colleges and making the team in her second year!

 

[Jmrogers4]

Welcome I can attest to silent nature of disease. Has your son always been in/near 50%? My son was diagnosed at 10 years old and was about 50% at that point had been up towards 75% but kept dropping just assumed hadn't gotten his growth spurt like the other boys but he pretty much quit growing from about 10-14 even on medication which we assumed was working he had inflammation silently working away in small intestine which interfered with his absorption of nutrients. Now on the right medications he is back up where he should be and just hit 6' (he'll be 17 next month). He also has not missed out on anything anymore due to the disease and is looking forward to his senior year. He played on the baseball team again after just not having the endurance or the size to compete against the other players.
My son had a really good friend at the time of diagnosis who would "cover for him" she knew what was going on and was in choir with him so when he had to quickly leave she would tell people he was fine but he just wasn't feeling well. I did let his choir instructor know she changed his spot amongst the choir so that he could slip away if needed. He also at the time did not want anyone to know and your son may continue to be that way if it does turn out he is dealing with IBD. My son lets everyone know now and it is just a part of who he is.
My mother in law is also a naturalist and really aren't we all to some degree and want the healthiest way to keep our children healthy but I do remember when Jack was first diagnosed she suggested coconut macaroons to treat him because she had read somewhere that it cured crohn's :ylol2: I know it comes from a place of love so I try and just listen and take it for what it's worth.

 

[Farmwife]

Hi and welcome.
You've already been given great advice.
My girl was dx at 3 and she still doesn't fit into a neat little box.
Grace went untreated/ under treated for a long while and paid the price.
I hope you get better answers soon.

 

[Clash]

Welcome to the forum. If you've been browsing awhile before your first post you've probably come across my son's story. But we'll give our experience:

My son wasn't asymptomatic at dx, in fact he was in a lot of pain. There wasn't a lot of diarrhea and very little of any bleeding. There was fatigue, night sweats and fevers, mouth ulcers and abdominal pain.

The small area that was affected by active inflammation was severe so straight to biologics

All symptoms he had were gone. Outwardly he was a typical teen. But since the inflammation was still present (even with meds) inwardly damage was occurring.

This damage led to his first surgery then a switch in biologics

He has yet to reach remission. This isn't typical but it does happen. The meds are scary but what's even scarier is when the meds won't halt the disease in its tracks.

With growing bodies and brains it's so important to give them everything they need, since there is a window of time that all this occurs.

I agree that 5ASAs probably aren't doing very much since they don't effectively treat all layers of the intestine which is what CD affects.

For most kids the meds can control the disease and allow them to live their life with no restrictions. It also allows their body/brain to achieve optimal growth.

I hope you are able to find a med that gives your son the best QOL. There are a number of parents here that have active kids who only think about their CD when they are taking their meds. Otherwise theyou are out being kids.

Good luck.

 

[JLOptimistic]

Thanks everyone for your advice and kind words. I'm much calmer now as I hadn't had a lot of sleep for the last few days when I wrote my original post.:redface:

We did end up pulling him from the dance group as his symptoms were still not under control. The director of the group was so nice and understanding and made a point of letting me know that this disease would not be held against him if he decided to try out again in the future.

He's still on the Mezavant and the bleeding has stopped as well as the numerous trips to the bathroom although he's still spending a fair bit of time in there when he does. He does have his iPad with him as I ask him to take a picture each time as it's much easier to see if there's any changes (as well as show his doctor) so that may add to the time but not by much I think. I do find it amusing how nonchalantly I flip through the bm photos though. I spoke to his Dr. about the diarrhea and that he's still going to the bathroom during most nights. I did ask about the Colitis dx and they said that right now it appears to be UC. They prescribed suppositories for 2 weeks to try to get the medication right where it's needed and speed up healing. Did the first one last night after much bribing and theatrics. :runaway: I will say that it wasn't anywhere near as bad as I thought it would be as I was freaking out a little myself but not letting it show. :ylol: With that, I'm cautiously optimistic as he managed to get through the whole day of school without calling me to say he felt sick!

While I'm still nervous about him being on medication, I consider it the lesser of two evils (with under/uncontrolled IBD on the flipside of this as was pointed out in a few replies ). I realize from your replies and other posts on this forum that if medication/drugs are going to allow him to actually have a life and hopefully prevent internal damage, than so be it. I'd rather take the risks than watch his QOL deteriorate.

This people on this forum are wonderful as you definitely a little less like you're completely alone in this!