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Feel so helpless

lisaellisha

lisaellisha

My son was diagnosed with Crohns in December. He was put on Imuran and Acid blocker (Previcid) and Prednisone. The Prednisone made his face blow up like a balloon. However, the did get better. Once Predinsone stopped his face did return to normal.

He was then put Imuran for maintenance. Unfortunately, since I HATE having to give my child so much medication, I stopped giving him his meds for 3 weeks. Needless to say, he flared again.

When he flares, he vomits (he doesn't have a problem with loose stools). Now the doctor has put him back on acid blocker and may possibly put him on Remicade.

I hear good and bad things about Remicade. I feel so helpless because I don't know what to do at this point. It's obvious that he will have to be on medication but at what cost?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Unfortunately, while it is true we need to be on a lot of medication -- it's because we need it. Keep in mind, too, that if he ever gets into remission it's still important that he stays on it lest he go into flare again.

I've been on Remicade/Imuran as well as a combo of Humira/Imuran if you have any questions. Remicade works incredibly well for people, though I find that Humira has a much lower chance of side-effects (since Remicade is from mouse protein and Humira is from a humanized protein). Either way, if he does go on it, I hope it's successful for him.
 
SupportiveMom

SupportiveMom

Lisaellisha getting this diagnosis for my daughter was the hardest thing I have ever faced, and I have been through a lot. Something about it being your kid makes it harder to deal with than if it was yourself I think. Big hugs.

The drugs stink. The disease stinks worse. Skipping or not taking the drugs can make things more problematic than if you continued consistently. As you can see by my signature I have had to give my kid way too much medication, but we haven't found a treatment that works for her. The drugs sound scary and come with potential issues, but without them I know my kid wouldn't be alive today.

Let us know what happens with the Remicade. Hope things turn around soon!
 
lisaellisha

lisaellisha

Thank you so much for your support. But the thought of "MOUSE" protein is totally grossing me out!

The bad thing is, I guess he WAS in remission. He stopped the prednison and was only on Imuran and seemed to be doing fine. His levels were up and everything. But again, since I thought he was okay, I let him stop the medication. I now know to NEVER do that again.

He is 9 and has a hard time taking pills so they have them broken down into liquid.
 
Jmrogers4

Jmrogers4

Welcome lisaellisha,
My son is currently on remicade and is doing fabulously well on it (in fact much better than Imuran) as you found out the hard way it is the medicines that keep the Crohn's under control.
Humira is another one you could ask the GI about. It works similar to Remicade but is made from human proteins instead and is given through a bi-weekly shot. Remicade is an infusion given every 8 weeks (can be 4-7 weeks though depending on how they metabolize the medicine, my son goes every 6 weeks). We call it his mighty mouse juice and even had temporary tattoos made up with mighty mouse and powered by remicade for his infusion days.
Where is his Crohn's located?
 
SupportiveMom

SupportiveMom

I hear ya on the mouse protein. eww... don't be hard on yourself for letting him stop. At least you know now what it can do & why this is a long term thing. I am sure some others will chime in on tricks for pill taking. My daughter was 11 when she started with prevacid & prednisone and had no issues with them. I know it is probably only because we just started the transition to pills for tylenol versus liquid suspension. Even thought the pills were disolvables I think it helped her mentally take them.
 
mish2575

mish2575

If it is any consolation Remicade worked best for me, out of all the biologics. I took it from age 20 to 34. I had no lasting effects (that i'm aware of) and have had two healthy children.

Also there are many drugs that are commonly used derived from animals such as Heparin and Insulin.
 
Goofychicken

Goofychicken

My daughter was diagnosed in December as well. We're on Imuran and raniditine (zantac) and likely on it for life. But it works. We have our girl back. The medication sucks but like others have said, the disease sucks far worse. I'm so grateful we have access to medications that can combat Crohn's. It's a huge adjustment and it can be an uphill battle getting them well again, but it sounds like you're well on your way to figuring things out.
 
CrohnsKidMom

CrohnsKidMom

Welcome to the forum, but sorry to hear of your son's dx. My 9 yo son was dx'd last yr at age 8. I was as afraid of the drugs as the disease itself. I thought maybe we could treat it naturally or exclusively through diet. The good folks on this forum helped me see the necessity of the drugs. It is a bitter pill to swallow (pardon the pun), but it is reality. My son is on methotrexate injections and we've not had any experience with Remicade or Humira. But we'd probably be astonished if we knew what was in most drugs! Take care and I hope your boy gets back into remission soon.
 
lisaellisha

lisaellisha

Thank your your insight.

I hate the fact of knowing that he will have to have medicine intravenously but if it helps him to "appear" better than so be it.

I feel like he has been given a death sentenance. He will have to be on medication for the REST of his life and the medication he takes can't even guarantee that he will remain better. AND the meds will give him potentially FATAL side effects (I read about how the meds can cause cancer).

He is only 9 years old and I feel like he will never be okay again.
 
M

Momtotwo

lisaelisha,
Another new member here, and I can relate to your fear of the medications. I'm a mom who rarely gives her kids ibuprofen because I don't like medications. I have to work through this process and it seems that, at this point, I don't have a choice. I think I have to accept the medications and hope he is a lucky kid who responds well with minimal side effects. And hope that new treatments are coming out. When my dad was being treated for cancer, his oncologist told me she thinks biologics will change the treatment of many diseases in the future. At the time, I didn't know it would matter so much personally and didn't know my child's future would be affected by that research.

Did you read about EEN? I've only read a little bit at this point.
 
Maya142

Maya142

Moderator
Staff member
Hi Lisaelisha,
Like many of the other parents on here, I was horrified to think about putting my kids on meds for life. But at some point you realize that the disease is much worse than the medications, and though there are some very nasty side effects, those are pretty rare. I'm going to tag Mylittlepenguin, she has some good statistics on the probability of cancer.

Both my daughters have been on biologics for years, and actually those are the only drugs they haven't had side effects from. My older daughter has completely gotten her life back from being on Humira and methotrexate, and is pretty much a normal college student. My younger one has had a harder time but it is improving on Remicade. I don't know where they would be without these drugs.

It's a huge adjustment and takes a while to find to your new normal. Good luck!
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
lisaellisha said:
Thank your your insight.



I hate the fact of knowing that he will have to have medicine intravenously but if it helps him to "appear" better than so be it.



I feel like he has been given a death sentenance. He will have to be on medication for the REST of his life and the medication he takes can't even guarantee that he will remain better. AND the meds will give him potentially FATAL side effects (I read about how the meds can cause cancer).



He is only 9 years old and I feel like he will never be okay again.
Click to expand...

It's not a death sentence! I managed to get into remission and I feel amazing, like I don't have an illness at all. I just have to take more medication than most people. And if that's the price... that's fine, I'm all right with that.

The side-effects I've honestly learned to gloss over, because realistically they're very low. 1:10000 with just a biologic, and 4:10000 if you add an immunosuppressant. And if you add a biologic at a younger age, it's said that the illness may be more mild later on. You just have to learn to be hypervigilant and jump on symptoms when you see them.
 
DJW

DJW

Forum Monitor
Hi lisaellisha. I just want to send you and your son my best wishes.
The early days can be overwhelming. I was diagnosed young but had a twenty year remission. Hang in there. Educate yourself.
 
Brian'sMom

Brian'sMom

Location
Midwest
DJW, what do you attribute to your 20 year remission? I see you had an ileostomy at age 19. My son just had one at age 14 because we couldn't get to remission no matter what we tried. Is that what helped you? And do you still have it or has it been reversed?

lisaellisha, I can totally understand your fear of the meds. That too was one of the hardest things for me. I never gave my kids anything... rarely a tylenol etc. I think about down the road... and what the meds will do to organs, immune system... etc. But then I think what the crohn's will do and I am thankful for the meds!! Hang in there. And keep hoping for a CURE!! Its coming !!
 
DJW

DJW

Forum Monitor
Hi Brian'sMom. Honestly, if I knew I'd bottle it and give it to everyone. None of the meds worked...surgery eventually got me into remission. I've been flaring for the last 2+ years. Thankfully it's limited to the stoma and last couple inches of the intestine.

Mine is permineny. I have about a metre left so surgery isn't an option anymore.
 
DJW

DJW

Forum Monitor
Please ask anything you want. I'm happy to help anyway I could.

The stoma is dark dark red on one side. With an ileoscopy the doctor could see white ulcers. Everything else is clear.

Btw-when healthy I lead a full active life. Post secondary education, work and lots of sports including cycling, golf, baseball, and hockey. The ileostomy really did give me my life back.
My biggest mistake. Trying to deny I had crohns and an ileostomy. Body image can be an issue.

All the best.
 
my little penguin

my little penguin

Moderator
Staff member
DS was 7 at dx.
Things were very tough in the beginning .
DS learned to swallow pills at 7.
Ccfa has a good sheet on how to.
DS can now swallow about 7 pills at once .
Remicade was the best for DS .
DS and his dad made a special trip
Stopped at the gift shop got goodies watched movies etc...


Things go back to a new normal soon.
Crohn's disease is evil and can be dealt when untreated.
Google what bowels look when they are removed from Ibd .
That is what your trying to stop.
The image helps with the scary drugs.
 
lisaellisha

lisaellisha

It's so hard. He just threw up AGAIN. Did it twice at school today. How can I keep meds in him if he keeps vomiting?!!!!
He is so weak. Hopefully, the REMICADE will help.
I pray it does.
 
Farmwife

Farmwife

My Grace takes zofran. It helps a lot. She takes the kind that dissolves under the tongue.

I'm sorry it so hard right now. I hope he improves quickly.:hug:
 
A

awmom

Welcome....you will find so much info and support on this forum. When my son was diagnosed at age 14 they put him first on a non systemic steroid, then prednisone, then Pentasa, followed by an immune suppressant and then Remicade, finally he needed surgery to remove a stricture and remains on remicade. This long story to let you know that I balked at and freaked out about each new med. Now I can't help but think that if they had moved to the remicade more quickly he might have avoided the surgery. It is so difficult to know that your baby has to be on these meds for life, but they really are necessary to hopefully avoid damage to his bowel. It took me a long time to really internalize this.

I hope they find a med that works well for him soon. The remicade treatments are not traumatic, just a little lengthy. When a med starts working and you see your child feeling better you will relax. It just takes time to accept and come to terms with. Let us know how he does!
 
Brian'sMom

Brian'sMom

Location
Midwest
lisaellisha said:
It's so hard. He just threw up AGAIN. Did it twice at school today. How can I keep meds in him if he keeps vomiting?!!!!
He is so weak. Hopefully, the REMICADE will help.
I pray it does.
Click to expand...
My son vomited a lot when flaring. It was caused by the cramps for him. The cramps were so intense- everything would come up. It was just how he handled the pain I guess. The Zofran didn't help with this because it happened only when he went poo... zofran is for nausea and of course didn't stop the cramps. His GI staff would give lots of suggestions. Each flare... when we got the cramps under control... the vomit stopped... every time. Right before surgery.... even water would cause cramps. I would worry it was a stricture... but for us it wasn't.
 
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cre

cre

My son was diagnosed 6 weeks ago, 2 months shy of turning 3. He just had his 3rd remicade infusion and he is tremendously better. There is hope!!!!! I crush his steroid, mix it with liquid and give it to him in a oral syringe. He always has a chaser of water ready. I hope it works well for him and he is feeling better soon.
 
Sascot

Sascot

Hi and welcome. I also didn't want to give my son meds, so out it off for 6 months which ended when he needed an operation on his bottom. So now he is on Mercaptopurine and doing well. We can only try to make the best decisions we can. Hope the Remicade works well for him.
 
Jmrogers4

Jmrogers4

We've done them all SCD, Paleo, Gluten Free, Dairy Free. For some they provide some relief. I recommend keeping a food journal, note things he reacts to. Try gluten free and see if it helps. We thought it helped us but when we added it back it made no difference. I think now it was just the medicine working.
We know try and do mostly clean eating (we definitely fall off the wagon often) but generally try and keep as close to natural as possible. No processed foods. Although he is a teenage boy and plays sports there have been far too many trips to McDonalds lately after baseball games ending at 8:30 and he is starving.
 
lisaellisha

lisaellisha

Does anyone have any specific foods that a picky eater (especially for a kid that pretty only eats pizza and chicken nuggets )
I think it will be really hard to get him to "eat clean". Any suggestions? (Btw, he doesnt like eggs, milk, yogurt, jello, spinach or salad)
 
Clash

Clash

When in an active flare some CD'ers follow a low residue diet which can help with symptoms.You can click on the high lighted words in the previous sentence to get more info on the low residue diet. You can also google low residue diet to get an idea of what all it entails. It is fairly easy for a kid to follow since it includes foods they will readily eat.



When not in a flare my son tries to eat fairly clean but could do better. With a teen it is a work in progress.
 
Jmrogers4

Jmrogers4

I've got one of those and he is almost 15! There are lots of recipes and websites for clean eating, start slow and introduce things. It took us a while to get there and we are not 100% by any means but what I can do clean and that he will eat I do. Also it's not cheap and it's so much easier to buy a box of chicken nuggets (my kids loved the dinosaur ones). Take it in stages aim for 25%, 50% and go from there. Just keep introducing things sometimes a lot before they will try it.
Here's a recipe for chicken nuggets http://skinnyms.com/skinny-chicken-nuggets/
 
Chester31

Chester31

Location
Stockport, UK
My son went gluten-free before he was diagnosed with Crohn's and it definitely helped with some of his symptoms e.g. mouth ulcers, stomach cramps and brain fog, but it won't get rid of the inflammation. He has been GF for more than 12 months but is now wanting to try gluten-containing foods again. My son isn't a fussy eater so it hasn't been too difficult - you could try making GF pizza or chicken nuggets - I found a recipe that coated the chicken in GF cornflakes!! GF is now really popular and there are lots of great recipes around.
 
Mehita

Mehita

Chester31 said:
My son went gluten-free before he was diagnosed with Crohn's and it definitely helped with some of his symptoms e.g. mouth ulcers, stomach cramps and brain fog, but it won't get rid of the inflammation.
Click to expand...
My son was dx'd with Crohn's and Celiac at the same time so he had to go gluten free no matter what. I just want to stress what Chester said. Changing the diet isn't necessarily going to get rid of inflammation and many of us here have learned the hard way that low grade simmering inflammation can cause a lot of trouble.

I, too, didn't want to do the meds and because of my fear, my son suffered for it. I didn't want to start him on 6MP. He ended up with a stricture from the simmering inflammation and had to have surgery at age 12. Had he done 6MP sooner, he'd probably still have all of his small intestine. He's now on Remicade and doing well. The drugs are a lot easier to accept when you see you child living a normal life again.

It's going to be trial and error for awhile until you figure out what works best for your son, but I'd urge you really reconsider getting him back on meds. Yes, they suck and can be scary, but undertreated and untreated Crohn's is far scarier. Been there, done that!
 
SupportiveMom

SupportiveMom

I changed our diet to glutten free. It didn't help my daughter, but it helped me!

She is lactose free, so far that is the only one that has made a difference for her. That and she has a big list of 'NO'food based upon trial & error. We visit it from time to time to check if it is still a 'NO', because a lot of times what you can't tolerate now you tolerate later & vice versa.

There are some people that have done Paleo, SCD, and others. Check the diet section there are some great tips.
 
cre

cre

lisaellisha said:
Does anyone have any specific foods that a picky eater (especially for a kid that pretty only eats pizza and chicken nuggets )
I think it will be really hard to get him to "eat clean". Any suggestions? (Btw, he doesnt like eggs, milk, yogurt, jello, spinach or salad)
Click to expand...
You should take a look at the cookbook called Deceptively Delicious by Jessica Seinfeld. I haven't used it since my son has been dx for he is on a low residue diet and i know she adds lots of pureed veggies. I did however use it before, I had an extrememly picky eater and she has some great ideas.
 
Maya142

Maya142

Moderator
Staff member
We tried gluten free too and didn't help my daughter at all, in fact she lost 4lbs in a month because she's so picky!
She's lactose intolerant though and a lactose free diet has helped a lot with nausea.

SupportiveMom - we haven't found good lactose free cheese but we did find good lactose free ice cream -- Lactaid or Breyers!
 
Jmrogers4

Jmrogers4

We do Breyers Lactose free as well, only problem is it only comes in Vanilla and I love strawberry ice cream so I have to cut up strawberries to put in it probably better for me in the long run to have fresh fruit but you know sometimes you just want to eat it out of the carton. But have tried a bunch of lactose free dairy deserts because I absolutely love ice cream and Breyers in my opinion is by far the best tasting.
 
Maya142

Maya142

Moderator
Staff member
Jmrogers4- They just came out with chocolate (which my daughter loves)! Perhaps strawberry will be next?!
 
Jmrogers4

Jmrogers4

Ohhhh I'm so excited!! I'm going to be watching for the chocolate! For the longest time I could only get the lactose free at one store and now it is at all the stores I grocery shop at. My younger son will be thrilled with chocolate he is also lactose intolerant and loves chocolate ice cream. Thanks Maya
 
nani0126

nani0126

Hello lisaellisha, my son was also just diagnosed last month. Hes 10 years old and has had similiar symptoms. This group is amazing. This is hard for me also but some of these parents have some great advise...especially the dont give up and every child is different with needs part. Im still trying to find out what works for my son. Im praying for you and all of us hopeful parents.
 
A

awmom

My son is on a gluten free,sort of, diet. The truth is, we Became gluten free at home, but when he goes out with friends he sometimes has no choice . I do think it helps him. Sometimes when he eats something with gluten he does ok and sometimes not, but we are never sure if it was the gluten or what was eaten along with it! I think it is worth a shot to see if it makes any difference. You can try for a couple of weeks and then reintroduce it. But beware, there are a lot of very processed GF foods out there that may also cause problems. You may also want to look into the SCD diet.. It was too restrictive for my son as he was very thin at the time so we did not do it for long, but I have to say that it did help.

I think with diet it is a very individual thing. Some do well with little or no restrictions and some have many. Try to keep a log of what he eats if it seems he's in the latter group. Does he seem to have problems with certain foods?
 
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