My story - and concerns

[jperkin4]

Hi all,

My name is Jim. I'm 41 years old, I was diagnosed with Crohn's when I was 20. I tend to have more issues with arthritis then bowel problems, though the bowel issues are no bargain. I've had severe arthritis issues since I was diagnosed. It was primarily in my knees for the first 10-15 years or so. I've had multiple surgeries repairing the damage that's been done to my knees. The last 5 years the arthritis has decided to travel more. I have issues on and off with my fingers, elbows, feet and ankles.

I was on 15 mgs of prednisone per day for about 6 years. It helped, but I put on about 40 lbs over that time frame. I went off of it about 6 months ago and I've dropped about 25 of that. Currently I'm only on Cymzia. I'm in more pain than I was when I was on the prednisone but at least my weight is heading in the right direction.

Other than my own issues and I'd love to hear any ideas on how to work with my disease better. I have been worried about my daughter. She's 5 years old and has been complaining for a few months about her stomach bothering her. She's also been saying that her body hurts her. She has trouble localizing it. It's hard to take the word of a 5 year old on these types of things. I don't know for sure if it's completely real or if she's playing it up. How young can Crohn's symptoms start showing up? Should I be having her checked out by a GI?

Thanks in advance for your help,
Jim

 

[Astra]

Hiya Jim
and welcome

Sorry to hear about your pains, some of us are riddled with arthritis, I have aching joints too, but arthritis has been ruled out, maybe just part n parcel of being a Crohnie?
We have some parents on here whose children are younger than your daughter and have been dx with an IBD.
Check out our 'Parents with Children with IBD' subforum for more info.
I believe it would be a good idea to get her investigated, just to rule out IBD.
Good luck and
lotsa luv
Joan xxx

 

[Crohn's 35]

Hi Jim, :welcome: I had multiple surgeries on my knees too and mod arthritis has set in it. Not fun. I was on Nsaids years ago and Ibuprofen but since being on here a few years back I learned it was a no no. GP's have no clue about Crohns and therefore give you meds that you should not be taking. Causes more problems.

The odds of your child getting it is low however it runs horribly in my family and my mother or father never had bowel problems but it can skip a generation, if it is gene related. 5 Year olds don`t make up stories of pain unless you are constantly making a point of it out loud around her , so get her blood work done and levels checked. Vitamin D is important. Try not to worry, as it wont do you any good either. How long has she been complaining of her tummy problems. Does her bm smell sour and any blood in it? Let us know and hang in there! We are here to help.

 

[Angrybird]

Hi there, it is definetely worth getting your little one checked out. There was a thread recently from a parent whose 3 yr old has been diagnosed..... Sorry to hear about your own joint issues as well, I am lucky that I only now have the occasional knee pain, I definitely think this is all tied into the crohns.

 

[David]

Hi Jim and welcome!

In addition to what was said above, have you had your vitamin D levels checked? Give this thread a read as if you're deficient, proper supplementation could make an enormous difference for your symptoms. And Vitamin D deficiency is EXTREMELY common.

I hope your daughter ends up ok. Please keep us updated!

 

[jperkin4]

So I talked to my daughters general doctor about this last week. They want to see if it a viral problem before looking into Crohns. She has been much better over the last week or so, hopefully it was just a stomach bug that set her system off for a few weeks. I happened to meet with my GI last week as well and he told me that my daughter only has a 5% chance of getting Crohn's given that I have it and my wife does not.

Of course I was at my GI because I haven't been feeling well myself lately. I've had a number of spells of gastric distress as well as night sweats. Of course the night sweats weren't nice enough to only happen at night. I had them on and off for almost a week. My GI tells me that the night sweats are usually related to a small intestinal manifestation of Crohn's and my Crohn's has always been limited to the large intestine. So that is not good news. I have a cat scan that I need to schedule to verify it. According to him, Vitamin D deficiency is more related to small intestine issues. So to answer the previous post, if my scan reveals a small intestine issue, I'll be tested for my vitamin d levels. He also put me on Apriso, anyone have any experiences to share with that. I'm only 3 days into it, but I've had 3-4 bathroom episodes today and my left elbow has swelled up up to the point that it looks like I'm trying to hide a tennis ball in there. So not a smooth start...

 

[chrisnsteph1022]

I'm on Apriso. Unfortunately, I flared up while taking it and have continued to flare for a year. I'm about to drop it.

 

[Snap]

Hey Jim--sorry to hear that you are doing the flare thing. I have just one tiny question---have you also been evaluated for rheumatoid arthritis? Just curious. I don't think it is overly common to have 2 autoimmune diseases at once--but I know a few people with more than 1. Take care--hope your daughter continues to improve. I know how that can worry you--I have 2 boys and hope they never get this. I have no family members with Crohn's, though. Weird and mean disease for sure!:ymad: Dana

 

[jperkin4]

I have a rheumatologist that I see regularly. What I have has always been described as a Crohn's induced arthritis. My GI has also stated that my symptoms aren't exactly common, but they aren't exactly rare either.