Omg

[WorriedMom]

I am going crazy... Last August my son (13) got really sick we couldn't leave the house for a couple of weeks. He was in constant excrutiating pain every time he went to the washroom. He would sweat, and cry and say he was going to pass out. He ended up being very anemic by the time I took him to the doctor. (in September) I thought he had the flu.. It only happens a couple times a month now, or if he is stressed or eaten something (milk or high in fibre)

From what I understand Crohn's is diarhia..Well my son starts out with a very very compact stool then explodes into diahria. I can't stand to see him in that much pain. He is going for even more tests at the children's hospital. Is this really Crohn's does anyone have similar symptoms.

 

[WorriedMom]

add on

I also should mention he always has growing pains, andfrequent ulcers in his mouth. They only have him on a high dose of Dicetel which only helps a bit. I have been reading and reading on this disease.. I am not sure if I can believe the doctors or if I just don't want to.

 

[kello82]

hello worried mom and welcome to the forum
i hope that at least some of your worries will get better by being the information and friends you will find here, it is a very supportive place

there are actually many crohn's patients who suffer more from the C than D. for me personally, i can go anywhere on the spectrum and have had days like you described from your son: starts out very compact with lots of C and then turning into D and cant stop going.
i also remember times being on the toilet in such pain as you describe- the sweating, the faint feeling, the crying. many times when i was younger my mom or dad would sit in the bathroom with me.
im so sorry worried mom i know it much be hard to watch. i am 19 and was diagnosed at age 9, so i know the pain my disease has cause my parents too. sometimes i feel that it is worse to watch than to be the one going through it.

let us know what the tests turn up, ok? it sounds a bit like crohn's to me as ive had similar feelings, but there are different types of digestive issues. so no one here can say for sure if it is crohns or not.

you two will be in my thoughts.

 

[kello82]

didnt see your second post....

hmm mouth ulcers can also occur with crohns too. i get those too.

 

[jed]

Hey there WorriedMom,

Welcome to the forums

Just as Kello said, it can be different for all of us, so the doctors diagnosis is what you’ll need to wait for.

The good news is, that this disease can be very treatable, it can take a while to get the right meds that work well, and even after that we can still have some flares. But its not a life sentence, many of us still live completely normal lives (I’m sitting at my really good job typing this to you)

And remember, this forum welcome any bowel disease, so feel free to stay around if it turns out to be something different.

Best wishes
Jed.

p.s. if it is Crohns, spend that little bit extra on the good toilet paper for your son

 

[CD68]

While belly and bowel symptoms may give docs a good idea of how they want to proceed with testing, the way Crohn's is diagnosed is looking at samples of the intestinal wall under the microscope (biopsies) which are obtained through colonoscopy.

Not only do I have Crohn's, but over the past four months my seen year old daughter has had diarrhea, joint pain, and belly aches. Hard to get the pediatrician to take me seriously. Two different docs have blown it off as antibiotics, bad drinking water, stress...

The second opinion pediatrician said that there wasn't anything she could do except refer me to a pediatric gastrointerologist. A CT scan should reveal thickening of bowel wall which is indicative of active Crohn's..they would still need to do a colonoscopy.

Not all Crohn's sufferers have diarrhea, I tend to constipation and some number of years ago the constipation was so bad that expelling the stool caused my anus to rip (fissure).

 

[kromom1]

I can sympathize with you, worried mom. I thank God every day that my 11-year-old hasn't gotten Crohn's from me, at least yet anyway. Like Kello said, we can't say for sure that's what your son has, but it does sound awfully suspicious for it to me. Hopefully the tests will be revealing and you will get some answers soon. I am not familiar with Dicetel, but from what I've read, it is a "miscellaneous GI agent," and seems to be used more for IBS (irritable bowel syndrome) than IBD (inflammatory bowel disease), which is what Chrohn's is. There are lot of drugs used to treat Chrohn's, so hopefully they will get him started on something else as soon as they determine what it is for sure. Hang in there and good luck. Keep us posted.

 

[WorriedMom]

We have been told that it is crohn's he is just going for more tests because of his heart burn and indigestion.. either me or my husband do sit with him in the bathroom, but like I said it is only a couple times a month now. Sometimes more sometimes less. However, when he has to go any other time he has to go.

 

[jed]

well if it is definately Crohns, then you've found the perfect place on the net to come.

grab a coffee, put your feet up, and have a good browse around. there is an absolute wealth of knowledge on this site covering every aspect of crohns. and if you cant find what you're looking for, then just ask, we'll be more than happy to help you.

 

[kello82]

hmmm missed that bit about it only being a couple times a month now. well that is a good thing that he isnt going through that all the time. you said it happens mostly when he has eaten milk or high fibre for ex., so avoiding these foods the rest of the time seems to make that symptom better?

but then does the indigestion/heartburn/ulcers and other symptoms go on all the time? or only once in a while like the bowel movement troubles

has he ever had the colonoscopy like CD68 mentioned? that is usually the starting point for getting him onto actual crohn's medications that can help. it sounds as if he is not on any treatment now..?

 

[WorriedMom]

Yes, he has had every test under the sky I think, From the time I finally took him to the doctor in September it only took a week to get in for a colonosocpy at Childrens hospital in vancouver..then many many many other tests. The scopes are awful. Blood tests are every two weeks. They want to put him on Predisone but want to wait until the indigestion and heart burn are figured out.

 

[markymark19857]

I would wait too before going on the prednisone - i was having a lot of trouble and now being on the prednisone i have been a bit better but its not a miracle drug for me......and at first it made the acid reflux and heartburn worse b/c its hard on the stomach. I have been able to eat more but havent gained weight.......explore all ur options before being on drugs...also i had a ton of tests done and they found inflammation on the colonscopy but the small bowel follow through and CT can were inconclusive. But they think its IBD/crohns - its a strange disease and it affects everyone differently

 

[kello82]

yess the scopes are awful! you will see whining about them in every corner of this forum, lol not fun. but they do serve their purpose- great diagnostic tool.

yes the pred can cause acid reflux- happened to me when i was on it for a long time 2 years ago. since then i have been taking prevacid which has relieved that problem.

 

[WorriedMom]

Yes he has indegestion everyday constipation very often sores in his month often its the excrutiating pain and diarhia that is only a couple times a month. I was wondering if it is because he was premature (29 weeks) (2.8 pds at birth) had liver issues and lung problems but not intestinal but still I wonder. I was so sick throughout the pregnancy.

Thank you all for responding it is reasuring talking to people who know about it. I wish you all the best. If I could be there when you need someone I would..even if it was to stand outside the bathroom door and reasure you...

 

[jed]

If I could be there when you need someone I would..even if it was to stand outside the bathroom door and reasure you...

i already have pingu to help me there, but thanks for the offer

as for what caused it, who knows. i dont think there is anyone here who has the same background. prem, ontime, overdue, vegan, carnivore, healthy, sickly???

i suppose its luck of the draw, we got the short straw this time, but maybe that helps us be better more understanding people?

your sons lucky to have parents that care so much, you'll be a wonderful help for him.

 

[pb4]

Dicetel is used for IBS not crohn's...and what you're describing sounds very much like crohn's which is what they've DX him with....I'd be careful waiting on using the pred though, pred can do wonders with symptoms despite the horrid side effects it can have and I stress can because the worst side effect I've ever had on the many times I've been on pred was some acne on my back, well worth it for the relief it gave, but besides pred he needs to be on maintenance meds and depending where all his CD is affecting him will depend on which maintenance meds they'll put him on.

I do wonder why he's not on any maintenance meds yet though, especially if he has officially been DX with CD.

The indigestion could be from the CD, has he had an endoscopy (scoped down the throat and into the esophagus?)

Probiotics can do wonders for the mouth sores and with IBD symptoms as well, they are friendly bacteria and IBDers tend to have bacterial over growth which tends to exacerbate IBD symptoms so probiotics are basically essential for us daily and indefinitely (even while in remission).

CD can involve diarhea, constipation and even alternate between the 2, there have been plenty of times where in one sitting I've started out with D and ended with C and vise versa, I call it mudslides.

The most important thing right now is for him to have some comfort and pred could very well be the answer for that, just make sure they put him on maintenance meds too.

 

[kello82]

If I could be there when you need someone I would..even if it was to stand outside the bathroom door and reasure you...

aww you sound like my mommy :smile:

there are so many parents/family members out there who dont think that this disease is a big deal and have the attitude "well, everyone gets upset tummies". and its sad for their kids who dont have the support waiting outside of the bathroom for them.

worriedmom, you are doing a great job at being THERE for him. i know you wish you could just fix it magically, but you are doing exactly what you need to do for him
(this probably sounds so weird to be coming from just a teenager, but i really mean it)
it might not be something he will realize or know how to thank you for, but he will appreciate you more than words can say

 

[Guest]

aw ((hugs)) to you & your little boy, WM. i'm so sorry to hear what he's having to contend with, at such a young age. and i know the feeling when your child's diagnosed with something

for both your sakes, i am so pleased you've found this forum - and for us, it's lovely to have you here. we'll all be here to support you every step of the way. try & take some time to read through past threads, particularly diet etc.. there's also an online link to a children's section of NACC http://www.nacc.org.uk/content/services/parents.asp which, although it's not in your country, does offer some interesting reading & advice.

good luck - i hope your son's symptoms settle very soon.

 

[drew_wymore]

Hey WorriedMom. Hopefully your little guy will get some good treatment and be on the mend soon. It sounded like you felt bad in your first post cause you thought he had the flu. I ignored my symptoms for several months because I too, thought it was the flu. So don't feel bad. You are getting him help and you're here which as Jed has said is a great place to get information and support.

I also have indigestion and heart burn and have had it for many many years before I ever had any symptoms of Crohns. It's been pretty easy to treat with things like Prilosec.

Keep us updated on your sons progress and hopefully he'll feel better soon.

 

[My Butt Hurts]

Hi Worried Mom - welcome to the forum!
There is a wealth of info here for you, hopefully the docs will get your son sorted out soon. It does take time unfortunately to figure out what works for each individual.
I'm glad that you found a place where you can vent your frustrations.

 

[WorriedMom]

Pb4, I know Dicetel is for IBS they are using it to try to releive some of his symptoms until we start other meds they said they want to wait until his upper endoscopy next month rather than start him on something and have to change it. However, he is on antibiotics again.

He loves my home made heat bags when he is in there. He is such a good kid..he is an "A" student, grade 7. He plays soccer 4 hours a day, 5 days a week for a metro team. (above house league and a rep league). One game he had against another province in October he collapsed because of his gutts. He was in such pain but didn't tell anyone. The coach was freaking out, thats when we realised we better tell people. That didn't stop him 2 days later he was back at it, I have no idea how he does it being so anemic. I think that the iorn and vitamine K shots really help out. We switched to liquid vitamins as well he seems to obsorb then better especially the calcium and vitamin D and potassium.

So I know you guys are all strong, you have to be.

I didn't realise this disease was so wide spread.

 

[pb4]

Maybe give probiotics a try (they can't hurt) they can be very helpful with symptoms cuz IBDers tend to have bacterial overgrowth issues and a good probiotic aids with balancing out the gut flora. A great one I use is called Primadophilus Reuteri made by Natures Way, it should be at any local health food store (in their fridge, as it must be kept cold), it's affordable and only one/day is needed, it also has guaranteed intestinal release....

You might be surprised at how much it may help him...I hope he soon finds relief....I'd still got the prednisone route just so he can hopefully catch a bit of a break from feeling so crappy with his symptoms.

 

[WorriedMom]

I have heard of this and I have been told that it may help his skin issues as well. He can only tolerate so much yogurt. Is this a inflamation related disease (IBD)? Everything my son has points to inflamation or irritation. I am so confused.

 

[Nancy Lee]

Hello WorriedMom and welcome to the Forum!

I'm a mom myself and I know how I worried when my kids were ill and young.
They're grown now and thankfully don't show any signs of Crohn's,
although my daughter does have irritable bowel syndrome.

I wouldn't be afraid to start your son on prednisone as soon as the doctors are through checking him. I know I felt better almost immediately with virtually no side effects except chipmunk cheeks. It gave me an appetite and a sense of well being.

Crohn's is an inflammatory disease of the intestines and symptoms can run anywhere from the mouth to the anus.

You hang in there...make yourself at home here and give him lots of hugs.

Hugs do help.

Once again, welcome!
Nancy

 

[pb4]

Probiotics come in supplement form (pills, pearls, powder) not just yogurt...I take a probiotic in pill form every day and it has helped me tons.