Diagnosed with Crohn's Sept 15

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LoveMyKiddos
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Date Joined Sep 2017
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   Posted 9/28/2017 4:56 AM (GMT -6)   
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.

gumby44
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   Posted 9/28/2017 5:52 AM (GMT -6)   
Ask your primary care doc for a round of prednisone until she can get to see the GI on Monday, and have her stay on lots of fluids and a low residue diet. Or call the GI's office and tell them what is going on and see if they will help you. (you can google low residue to get a list of foods) She's not to old for a pediatric GI, but at this point, go to whichever GI you can get into first. Don't hesitate to go back to the ER if her diarrhea gets bad and she's getting dehydrated, or if her bleeding is severe.
Sorry she's going through this. It gets better once she is on proper medication.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

caia_120
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Date Joined Dec 2013
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   Posted 9/28/2017 6:12 AM (GMT -6)   
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.

LoveMyKiddos
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Date Joined Sep 2017
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   Posted 9/28/2017 8:12 AM (GMT -6)   
Thank you for the replies. Sometimes it's just nice sharing and knowing that someone is listening.
Ive left messages with our GI and he doesn't call back. I know my regular family doctor will not give her anything, as this isn't his expertise. He's wonderful, but says it's above his knowledge. Wish our GI was even half that considerate.
Is the only way to bring this down with prednisone?
If you drink only liquids, doesn't it give your bowels a break? She hardly ate any solid food yesterday, yet she still has emergency trips to the bathroom all night. I just don't get it.

LoveMyKiddos
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Date Joined Sep 2017
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   Posted 9/28/2017 8:19 AM (GMT -6)   
Also was just wondering how long it takes for her medication Mezavant (mesalazine) to start working. Thx.

straydog
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   Posted 9/28/2017 9:20 AM (GMT -6)   
Do you have access to a patient portal with this dr so you can send an email? If not, try calling his nurse she can relay a message to the dr & get back with you. Some drs are just not good at returning calls.

Yes, prednisone is used often in situations like your daughter. It works faster in getting things under control. Her medication may do well at keeping things under control but for now it sounds like a course of pred would help her. Keep in mind not all meds work for everyone too.

I would go online with my insurance & look for a pediatric gi. I would call everyone of them listed & discuss how to get her established with one. Not sure who told you her was a factor in seeing one, I would have to check this out myself.
Susie
Moderator in Chronic Pain & Psoriasis Forums

scifigal2k
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Date Joined May 2012
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   Posted 9/28/2017 10:50 AM (GMT -6)   
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. smile
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

gypsyfp
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Date Joined Jan 2010
Total Posts : 428
   Posted 9/28/2017 12:11 PM (GMT -6)   
I was 15 when I was diagnosed too.
It took months of different doctors with different diagnoses and no meds prescribed.
Then finally in pediatrics, my mom lost her total ever loving sheeeeetttt.
She yelled so loud and demanded to speak to the head of pediatrics.
Because she did that, people finally listened to her. And so I credit her with saving my life more than the doctors. I was beyond saving at that point and really just wanted to die already.
If this GI isn't doing a darn thing and it was my kid, I'd go to his office at the busiest time and I'd make a scene in front of his other patients. Everyone would know what was going on and how he wasn't helping my baby.
You're her mom, but I want you to channel my mom.
Some days the only way to get real results is if you show your butt.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

73monte
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Date Joined Mar 2007
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   Posted 9/28/2017 3:31 PM (GMT -6)   
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.

beave
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   Posted 9/28/2017 4:35 PM (GMT -6)   
Sorry to hear of your daughter's diagnosis. A few questions:

Where do you live?
What were the results of the colonoscopy? Where was the disease located, and how severe did it appear?

Unfortunately, as others have pointed out, mezavent is not an appropriate medication for Crohn's disease. It is approved for treating mild to moderate Ulcerative Colitis. But it was never approved for treating Crohn's, because studies have not shown it to be effective for Crohn's. Many doctors mistakenly believe that since it has been proven to help with UC, that it should also help with Crohn's. But the data doesn't support that.

What's more, there is a small risk (about 1 in 20 or 1 in 30 people) where mezavent and its sister medications can actually make things *worse.* If your daughter has had a significant worsening since she started it, she might be one of those people.

Get her back to her GI, or better yet, find a pediatric GI in your area who really knows how to treat Crohn's. I'm concerned the GI you've seen so far does not qualify.

NiceCupOfTea
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Date Joined Jan 2010
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   Posted 9/28/2017 5:15 PM (GMT -6)   
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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 222
   Posted 9/28/2017 5:46 PM (GMT -6)   
My son was diagnosed at age 19 (now 21) and I became a "super advocate" for him and did a lot of research, doctor interviews etc. I found all types of discrepancies and mis information but this site was and remains an incredible place to go for venting, ideas and support. Best to you and your daughter. My son had rough 8 months (surgeries, hospitalizations etc) but is now in remission and we found the best doctor ever. Let us know how it is going...!

RISEagainst
Regular Member


Date Joined Sep 2017
Total Posts : 34
   Posted 9/28/2017 8:44 PM (GMT -6)   
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.
Diagnosed with Ulcerative Colitis (proctitis) July 26 2011. After a few minor flares my GI disappeared and I got worse and my last 3 flares were Pancolitis.
After spending 2 weeks in the hospital I decided to have surgery. First of 2 Jpouch surgeries was September 2nd 2016. Takedown was February 1st 2017.
It's not easy but what is? Well, other than having a healthy colon.

LoveMyKiddos
New Member


Date Joined Sep 2017
Total Posts : 10
   Posted 9/28/2017 11:47 PM (GMT -6)   
Wow! Thank you everybody!
Finally we went to Children's Hospital today. We live in Canada, and these hospitals are definitely class 1 rated. They listened, made the time to understand, and called our GI to figure out the next course of action.
Sadly, they sent us home.
Apparently our GI is waiting for one of my daughters stool samples to come in with results. Depending on whether it's positive or negative, the next step is either prednisone or an antibiotic. This is what we are waiting for.

I'm quite concerned about the medication that she is on now after reading many of your posts. She did get WAY, WAY worse after being on this medicine (mesalazine). She was on it for about 6 days, and that's when everything got so bad.

We are waiting for an MRI to check her small intestines, but with the colonoscopy, they believe it is Crohn's because of where in the bowel the ulcers and inflammation are. They did say however that to definitely diagnose, they needed a certain thing in the biopsy that they never got. This is how I understood it. Sorry if this makes no sense. ??

I so appreciate all your replies. I feel like I'm an advocate for my daughter, and all of you, from far and away, are mine. Thank you

Post Edited (LoveMyKiddos) : 9/29/2017 1:34:45 AM (GMT-6)


LoveMyKiddos
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Date Joined Sep 2017
Total Posts : 10
   Posted 9/29/2017 12:05 AM (GMT -6)   
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.

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9930
   Posted 9/29/2017 8:27 AM (GMT -6)   
You're fine with stopping mesalazine all at once. It's not like steroids, which you do need to taper off. But mesalazine is completely safe to stop suddenly.

My experience of GIs is that none of them have heard of mesalazine intolerance and have acted like I'm, if not making it up exactly, then exaggerating. It wasn't until years later I found out that I was right all along. Here's one article on the subject.

journals.lww.com/jpgn/Fulltext/2002/01000/Mesalamine_Intolerance_Mimics_Symptoms_of_Active.17

Of course it's still possible that your daughter's worsening of symptoms after starting mesalazine could be just an unfortunate coincidence and the mesalazine has nothing to do with it. But if it *is* mesalazine intolerance, then the GI probably won't recognise it as such.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15006
   Posted 9/29/2017 9:38 AM (GMT -6)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

73monte
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Date Joined Mar 2007
Total Posts : 1742
   Posted 9/29/2017 5:44 PM (GMT -6)   
Can't believe they're not treating her more appropriately right now. Can I ask, where in Canada you're located? As i recommended previously, I would get a lot more demanding, if things don't improve soon. Consider a GI that specializes in Crohn's.

LoveMyKiddos
New Member


Date Joined Sep 2017
Total Posts : 10
   Posted 10/1/2017 1:54 AM (GMT -6)   
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)


73monte
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Date Joined Mar 2007
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   Posted 10/1/2017 4:21 AM (GMT -6)   
You should notice a big improvement now that she's on Prednisone. 8 a day, which is 49mgs, is a very normal dose. She will take that for a week, then lower the dose each week by 5 mgs.

There are some negative side effects to pred. but they will resolve in the coming weeks. There are also some positive side effects as well. She will notice she has unbounding energy for one.

You'll need more diagnostic results before choosing her next maintenance plan. They Dr.'s will try to determine her severity then go from there.

Keep us posted, and hope she keeps improving.

NiceCupOfTea
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Date Joined Jan 2010
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   Posted 10/1/2017 7:48 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 :-/

gumby44
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Date Joined Nov 2007
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   Posted 10/1/2017 8:08 AM (GMT -6)   
What is the timing of starting the Prednisone and her improvement in symptoms? I'm asking because you might be attributing her dramatic improvement in symptoms to the stopping of the mezalamine, when in actuality it is because she also started Prednisone, which is known to work very quickly to improve things. Generally, if her biopsies show Crohn's vs UC, then the mezalamine isn't shown to be that useful, so stopping it won't hurt either way.
Starting at 40 mg of Prednisone and tapering down from there is a standard way of doing things. She might have trouble sleeping on that high dose, but it is temporary and she'll do better as she tapers.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9930
   Posted 10/1/2017 8:20 AM (GMT -6)   
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.

beave
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   Posted 10/1/2017 4:48 PM (GMT -6)   
If I were you, I'd have your daughter hold off on the prednisone for a few days. See if stopping the mezavent really does help her improve dramatically. (It's ok if she took pred yesterday and today to stop it cold turkey, but if she had been on it for more than a week, you don't want to stop abruptly.)

Pred is a short-term treatment when a person is highly symptomatic with pain, diarrhea, etc. But it's not a good long term solution as it can come with many side effects (the longer you're on it, and the higher the dose, the more side effects). A few weeks is generally ok, but it's still to be avoided when possible.

So if she really perks up and feels better after stopping the mesalamine, then there's no need to take the prednisone.

I asked earlier but didn't see an answer (did I just miss it?): What were the colonoscopy results? Where was the inflammation located and how severe?

[Hmm, now I'm seeing that my post is repeating a lot of what others said above - I started the reply before reading all the replies above mine!]

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9930
   Posted 10/1/2017 6:48 PM (GMT -6)   
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.
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