Diagnosed with Crohn's Sept 15

My 15 year old daughter was just diagnosed with Crohn's after her colonoscopy on the 15th. She was given Mezavant 2.4, and sent on her way. We have experienced a complete downward spiral ever since. The main thing is that she has bloody diarrhea all night long.
Before the colonoscopy she only had regular diarrhea a few times a day. Now it is bloody and all day, all night. She can't sleep, because she's getting up every hour, and now feels nauseated. We've been to hospital 2 times and they can't/won't do anything. They just say see your GI.
Because of her age she is stuck in the middle. Too old for paediatric, too young for adult GI.
We see her GI on Monday, but I just don't know how to help her now. We've tried liquid a few days, soups, etc and I don't know what to do. Any help or advice would be appreciated.

If you haven't called the GI's office you probably should. I'm not sure where you are but I would hope that your daughter could be seen in a pediatric office at least through high school. I was diagnosed at 19 and went to a pediatric GI through college, I think the pediatric GI's office provided the best overall care as compared to the adult GIs that I have seen in the last 12 years.
Keep pushing fluids and watch for signs of dehydration. Encourage your daughter to be open about her symptoms, they can be embarrassing and she may not feel like telling you or her doctor about them. If she is going to the bathroom that much you might want to get some desitin or other diaper rash ointment for her.

Also was just wondering how long it takes for her medication Mezavant (mesalazine) to start working. Thx.

Who prescribed the mesalamine? That's not the best Crohn's medication. It's effective for UC, but not very much with Crohn's. I know with her age it's hard, you want to do the lightest meds. Maybe try some baby food - I know that sounds gross, but it's made for babies who don't have very developed digestive tracts yet.

You shouldn't have to put up with such inadequate treatment, both medical and professional.

I agree with the previous posters. At this point, your Daughter would really benefit from a course of Prednisone. The medication you've been prescribed is ancient history. It really won't do a thing for your Daughter.

At this point, i'd call your family Doctor and get referred to someone else. At 15 your Daughter isn't "stuck in the middle". She should clearly be treated by a Pediatric GI until she's 18.

If you feel the need to go to emergency again, you might ask for an oncall GI. I'm in Canada, and we have this at our Hospitals.

As the previous poster said, you might have to get demanding, and really lay it on thick in advocating for your Daughter. Once you get her in the proper hands, things will start to get better.

Mesalazine made me much worse and it could be making your daughter worse. The only way to find out is to stop it for a few days and see if your daughter improves. Don't expect the GI to have heard of mesalazine intolerance, unless you're incredibly lucky. But google it and you'll find out it's a real thing.

That would be my first step. If your daughter improves rapidly after stopping the Mezavant you'll know it was the mesalazine after all. If she doesn't improve, then she'll need to get on some stronger meds ASAP. If the GI continues being useless, do ask for a referral to another GI.

She needs to be hospitalized but a hospital will rarely do that. It has to be from the direction of her GI. She will feel much better with IV steroids. It'll be okay, just make it to Monday.

One last thing.
Can I stop giving this medication to my daughter on my own? Is there any cautions with stopping all at once. She takes 2.4 everyday, for the last 13 days.

Hopefully the biopsy report will come in soon, that is the most vital part of the scope. I sure hope she starts getting some relief soon.

Hi everyone. Just updating you on what is going on with my daughter.
She didn't take her mesalamine for one day (last night at dinner), and is miraculously feeling better today. She is eating and acting like her old self. We even went out to the store. Her bowel movements are hardly bloody at all and the number of bowel movements have been cut at least in half. The pain is also tolerable, whereas yesterday she was taking Tylenol all day.
I believe she is totally intolerant to mesalamine!! She didn't take it today at dinner either, so we will wait to see how she sleeps tonight, and how her day is.

One concern though, today she stared prednisone because of how bad she had been feeling (because of the intolerance??). The doctor had prescribed it earlier in the week, but told us to hold off getting it until all the lab results came in. He called us and told us it was safe to take now, as she didn't have any infection. She is taking prednisone 8 pills x 5=40/day. Does this sound reasonable? This was her first dose, and I'm afraid that perhaps it is quite high (the dosage) because she was feeling so incredibly illl while on mesalamine.
If she is she intolerant to mesalamine, which maintenance drug is her best option?

Post Edited (LoveMyKiddos) : 10/1/2017 3:41:58 AM (GMT-6)

That's excellent news! I'm glad it was the mesalazine causing the flare-up, rather the Crohn's itself. As for the pred, that's a standard starting dose, so your daughter hasn't been put on an unusually high dose. Are they having her taper down by 5mg every week?

She should probably finish the course now, having started it, but for future reference consider Entocort instead. It's safer and has fewer side-effects.

The next maintenance drugs to consider are azathioprine and 6MP. And after those are the biologics, e.g. Remicade, Humira. If your daughter's disease is considered mild, she probably won't be eligible for biologics. If however it's moderate to severe, then she ought to go on a biologic (and azathioprine/6MP as well, partly to reduce the formation of antibodies to the biologic and partly because a dual combo is more effective than a single med).

When you next see the GI find out where the disease is located and its severity. If it's in the lower colon, then rectal steroids are another possibility. There are two types: predfoam (for the rectum only) and hydrocortisone enemas (these reach the whole left side of the colon). Alternatively, for the right side colon and terminal ileum, there is Entocort. The difference between them and pred is that they are topical steroids and pred is systemic. Topical steroids work only where they are applied (in this case the gut lining), whereas pred has an anti-inflammatory effect across the entire body. Pred is stronger, obviously, but also comes with far more side-effects and if taken long-term will cause steroid dependency.

But an 8-week course shouldn't do any damage - your daughter would have to be exceptionally unlucky if it did! She may not even get any side-effects, but if she does, then they will disappear as she drops to a lower dose or soon after stopping pred. Don't be alarmed if the Crohn's symptoms come back at a low dose either; that's normal for pred. It can knock an acute flare-up on the head in less than 24 hours, but it typically doesn't last. This is why going on a maintenance med, which you can stay on for years, is a must.

I went on a bit there, but hope some of that is useful info at least :-/

Pred works quickly, but it wouldn't work that quickly. In my experience it got rid of the pain first of all, but the diarrhoea always took a few days to go. (And then would come back the moment I lowered the dose even by 5mg, but meh.)

Acute mesalazine intolerance, on the other hand, comes and goes extremely quickly. It begins shortly after the first dose and stops in a few hours after the last dose. As rare as it is, I still wish to hell there was more knowledge about it. It delayed stronger treatment for me for years, because I didn't have a clue what was going on and nor, obviously, did my doctors. All I knew was I couldn't take this stuff for longer than a day or two, I was so ill.

Yeah, beave makes a fair point about holding off the pred for a few days - I should have thought of that, but I was kinda braindead at the time, sorry! It is safe to stop pred cold turkey after only a few days; it's when you've been taking it for 2 weeks or longer that you must taper.