Hey Stacey,So, both you, MLP and Dusty are dealing with arthritis now, too? Just keep piling it on, right?
SAHM, let me encourage you that counseling can be a good thing. I think it helped my daughter's anxiety over her Crohn's and helped me to understand the source of her fears so I could stop playing my part in creating the environment of fear, or something like that. I hope you both can find healing and normalcy and peace.:dance: Reviving this thread too by joining... I'm having a heck of a time. I have Crohn's, but it's harder to deal with my 13 yr old son's Crohn's than my own. The good news is, I know that I HAVE to take care of myself so I don't get sick too. I worry so much about him. Today, I called the insurance company about coverage for counseling, and I'm not sure whether I'm ready to drag him to a counselor, but I am trying to find one in our area for me (easier said than done), so that I can process all of this. I guess I'm trying to hopelessly fix something that can't be fixed. I want my kid to be healthy and go to school and feel "normal" again. Just when things seem to get back to normal, he has a flare. My sister thinks he is stressing himself out so that he doesn't have to face his fears, thus triggering a flare. Or maybe it's his diet, or he's doing too much, or not enough. Or it's everything. Or, I just need to put him on the heavy meds and throw up my hands. Thanks for letting me vent.:heart:
Hope, A lot of Jaedyn's fear at the time centered around having to have a G-tube. I was so stressed at the time about her health and frustrated with her not eating. I would use that as a threat to try to motivate her, but in reality it was making her more anxious, and the anxiety made her symptoms worse. Her counselor pretty much said making her get it G-tube would be something like abuse because she was so afraid of it . This opened up a lot of conversation over the G-tube, and we took it off the table as an option. I started working on finding positive ways to motivate her and a lot of her anxiety about her crohns improved.Counseling sounds like a good idea to help the whole family.
carol: please expand on your comment about eliminating fear. It may help all of us mother's with children IBD.
After a recent course of flagyl she has started flaring again. Never been in remission. We're looking at moving on to an adult GI soon as her GI doesn't want to change her medication.Where is she at with her Crohn’s upsetmom?
Large joint pain runs parallel to intestinal inflammation.
Dusty. xxx
I know of one child who died from leukaemia following a dx Crohn's but that child was miss dx with Crohn's disease when it was leukaemia along.Hi, I am mom of two adult children with Crohn's Disease. Lately, a friend's daughter died of Leukemia from being on an immune suppression drug for an organ transplant. Got me to worrying about the incidence of cancer for Crohn's patients taking immune suppression.
Yeah swimming is definitely something I am going to try. Exactly I was even researching EDS as I seen parents talk about it on here and thought is this a possible explantion as the fatigue and impaction are not being attributed to the crohns at all. We have been keeping the water intake up as it was recommended especially with the high dose of laxido that he is on daily. You are so right crohns does make dealing with everyday kids things harder. I suppose everyday is a learning day with it xoOngoing pain can really tire a person out.
No activity can make the constipation worse. Exercise is a big component on alleviating constipation. It wakes up the bowels and gets them moving. My non Crohn's daughter suffered terribly from constipation as a kid. Even got to the point of rectal prolapse. We had to have her drink a lot of water. Most teens don't drink nearly enough water. She also was a swimmer and we found that swimming helped move her bowels. It was something about the exercise but more the water. Maybe the kicking motion? The relaxation that comes from the repetitiveness of doing laps etc.
Good Luck. It is so hard to deal with somewhat normal kid things when they have Crohn's. We are always wondering what is causing what. Hugs!
I will definitely be making a purchase from amazon of that book thanks so much for recommendation. I will try anything. I took him around the track and told him we will be doing that each evening once I finish work and also pool at least once per week. It really has consumed his life for the last year. Sometimes it feels like you jump one hurdle nad another makes its presence known. I have been researching what causes loading in transverse and ascending colon but not really coming up with anything. It may just be something he will have to live with. I also am not sure if taking all of the laxitives and meds at the moment are going to make him dependant completely on them for a bowel movement. He is really just having overflow whenever he has a motion.Yes, I agree with what my little penguin said. It sounds awful and cruel to make a child in pain get up and get moving and go to school, but it really helps.
There is a great book called "Conquering your Child's Chronic Pain" - you can get it on Amazon. It talks about amplified pain and how it is treated. Amplified pain is essentially over-active nerves that are sending pain signals to the brain when they shouldn't be. It can be triggered by inflammation or even something like constipation - his nerves are so used to sending pain signals because of the constipation that even when it's gone, they continue to send them.
That is pretty simplistic but that's how it was explained to us .
The idea is to live as normally as possible. The kiddo is supposed to go to school, extracurriculars and just keep themselves busy. Parents are not supposed to ask "How are you feeling?" constantly because it draws attention to the pain. Instead, if the child says he is in pain, suggest a distraction - whether it is going for a walk or reading a book or even watching TV.
The goal is to get the kiddo functioning as normally as possible. Over time, the pain will reduce. You can try meds like Gabapentin - they are used for this kind of pain. Opioids are a bad idea because like you said, they will worsen constipation.
Start small - whether it is 10 minutes in the pool or a 10 minute walk. Exercise really helps, so daily exercise is a must. My daughter tries to walk or bike for 20-30 minutes daily. When she is home (she is at college now) she also swims.
If he can't do full days at first, do a week of half days, then try full days. Tell him he can go to the nurse if he needs to, but being in school is really important. His brain will be busy focusing on school work and not on the pain.
Physical therapy can help. The pediatric pain programs they have the in US are amazing - I would see if there is an equivalent in the UK. My daughter did one and it really taught us to think about pain very differently.
Seeing a psychologist to learn different ways to cope with chronic pain is also very helpful. Meditation, imagery, breathing can all help.
Sounds like gabapentin really would be worth a try. God love your girls dealing with crohns and arthritis warriors they are.My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.
But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.
Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.
Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?
Gastroparesis has never really been mentioned. He actually had a barium swallow I think test was called last year when this all started. After it they actually commented on how fast it went from stomach through small intestine. He did have a narrowing from surgery resection site but was getting through fine. It seems to be after this that it slows down. I really will be finding out about a motility specialist as no one is suggesting what is causing this. I know ibs may cause this but surely then it would have always been an issue and not just started xoI honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.
But it's at least worth asking about, if there is a motility specialist you can see.
Yeah that's what I was thinking that it wasn't the same but had been trying to find other possible causes for slowing down when it got to the large intestine. I have been reading the book I got from amazon and it has made me so interested in the pain management clinics mentioned. However none in Ireland or uk I can find. Its interesting too as aspergers syndrome is mentioned as well IBD. He also has aspergers syndrome. His school has contacted me today to say that he is so unhappy at school and they want a meeting.If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.
https://aboutconstipation.org/colonic-inertia.html
Oh it really is I wish I could help him as its really affecting his life now to the point that his school has just rang and want to meet with me. He is miserable all the time and says he just feels horrible all the time. Last year he was given some treatment for bacterial overgrowth as it was a suggested possibility. It didn't make any difference though. That is interesting about the celiac I am unsure if he was ever tested but will be asking the question xoJust going to throw a couple other thoughts out there. Dairy is known to be a common food intolerance that can cause constipation. Perhaps there are other food intolerances that may be causing this.
Also, IBS does cause constipation and many IBDers have an IBS overlay. My older Crohnie was dx'd with IBS by her last GI, emphasis on last. It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth). It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery. It is very, very often misdiagnosed as IBS because it produces many of the same symptoms. Diarrhea is more usual but it can produce constipation. The test for it is an easy in office breath test.
I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.
Ugh! The gut is so cloudy!
Thank u for the link also Maya142 xo I am going to take him to my GP as his consultant is so busy and see if they know where he can get transit test carried outIf food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.
https://aboutconstipation.org/colonic-inertia.html
I have heard of reloading with Remicade. Usually it's done when there's been a break in treatment, but it makes sense to do it in your son's case, since there was no Remicade in his body and you're essentially starting from scratch.Has anyone heard of re-loading remicade. I have read many messages and haven't read anything about loading doses for the 2nd time. I too understand what you are all going through. Even when he is well, I am always worried that it won't last, and it's causing me anxiety! He was diagnosed at 19 and is currently 20, is pretty thin but has gained some weight since started Remicade. I am glad I found this thread. I think we would all trade places with our kids if we could.