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Crohn's Disease Forum

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New to crohns forms. I have 3 wonderful children. Kyle is my oldest at 14. He was diagnosed with crohns disease in january of 2010. July of 2011 he had resection surgery and was on Pentasa and Budesonide. His symptoms are mostly cramping and diarrhea. Sometimes he will wake in the morning and vomit. His doc would like to change his meds due to him not responding to current meds. His doc recommends remicade at this point. His B12 levels are also low at 154 so he will probably be starting shots for a short time.
I do not know how to help him. He has missed a lot of school this year and at times tells me he would rather be dead then have to deal with this disease. He does not wish to talk with others with his condition. Any suggestions would be most helpful.
 
:welcome: to the forum. Being here is one way to help him. There is alot of information here and he is also welcome to come one and share his experiences of his ordeal,as well as get information that sometimes doctors and outsiders have no clue.

I have had resections and B12 shot are almost essential in every case. I have been on the shots for over a year. B12, vitamin D3, Calcium and magnesium is the best thing we need for our bodies and he is still in his growing years. Remicade sounds scary but it is a far better solution than surgery, the less he has in his life the better.

Men/boys mostly suffer in silence as it is hard for them to come forth with their bathroom and bleeding problems. If he is a bleeder, he may be lacking iron as well. He will feel comfortable on here because we do not judge, or think of him any less because he is young. There are a few on here roughly his age and guys that would gladly give him the support and friends he needs to get through this rotten disease. Thank YOU for supporting your son... it means alot to us crohnies because it can be a long hard road for some.

Kyle will be ok, but the more he learns the better his life will get. Hugs to you and your son!!
 
Hello and welcome to the forum. I am sorry to hear about Kyle's diagnosis, I can understand him not wanting to talk to people about this, I am sure he finds it very embarassing if nothing else. Remicade is one of the big hitters so fingers crossed this will get things sorted. Being B12 deficient is very common for us crohnies, my nurse has told me however that I will now need the shots for the rest of my life so I would ask about this. Also have a look at our parents forum, a lot of advice and support will be available there and I think yo would benefit from this. I do so hope that things improve for Kyle, please keep us updated on how things go :hug:
 
I would suggest anyone new to Crohn's to lobby their doctor to prescribe LDN (see the Low Dose Naltrexone thread for the two latest studies to print and inform your doctor) as it is the least likely to cause serious side effects and the most likely to maintain (or even reverse) the current progression of the disease, in my opinion. It also will not interfere with any other meds--other than pain meds. In my opinion LDN is unique since it seeks to balance and not suppress the immune system.

I am very biased toward a dietary approach to treating crohn's. Good probiotics and omega 3s are a must and make my cramping/diarrhea almost nonexistent. See my post under the Success Stories thread under the Your Story section called MY Supps for MY Dis-ease. This is probably a harder road to take at such a tumultuous age. Cutting out all caffeine, sugars (all real and fake sweeteners: sugar, HFCS, aspartame, acesulfame potassium etc.), smoking, preservatives, unrefined grains and opting for real foods only takes time for your taste buds to transition to. For me, quitting drinking soft drinks was the hardest dietary change. Encourage him to record a food diary for a couple weeks, paying attention to trigger foods--oftentimes crohnnies have sensitivities to dairy or wheat, for example. Try excluding one food at a time and note the results. Surf around this site for dietary triggers or vitamin deficiencies. In the northern hemisphere, people should be supplementing vitamin D3 (2000-5000iu)--especially in the winter.

I had a very nihilistic outlook at that age and I'm sure no one my age would've even wanted to hear about my health concerns--even if I wanted to talk about it. It's a very superficial, ego-based age. Anyhow, Crohn's is not a death sentence and there are much worse diseases out there. That being said, in its own way it is a very psychologically challenging disease since it is not visible to others. It's not visible or certain to yourself either, just how extensive the subtle, unconscious nature of Crohn's is. Only endoscopies, colonoscopies and pill cameras(best for small bowel monitoring) really let one know visibly how good/bad it is. Low B12 can cause emotional effects all by itself and everyone who needs injections often report feeling dramatically energized afterward.

I would encourage your son to find some kind of emotional/artistic outlet. Learn an instrument, play a sport, write poetry/diary or just get frustrations on paper, not to judge, but just get on paper, if only to throw away.

You should be applauded for going this far for your son. This site is invaluable in terms of second opinions and first hand accounts. The first step for you and your son is wanting to know more. Hope this helps.
 
If your son is saying he would rather be dead please take that very seriously and get him to a therapist right away. I know my daughter went through times like that and she is doing better after seeing a therapist. I do keep a close watch on her though.
 
Thanks to everyone for the information. Kimmidwife I appreciate your concern and believe me I have had many discussions with Kyle. I do and will continue to keep a close eye on him. Going tomorrow for yet another colonoscopy and upper scope. Remicade treatments will begin next week. Thank you again.
 
Kyles last procedure was done in October and they said he had some ulceration near the site where his surgery was. Since he is still having symptoms and before starting remicade they would like a baseline to go by. Kyle has had so many colonoscopies as I am sure many others have also. I will be sure to post the outcome.
Thanks
 
Welcome to the family, Mato.

I am so glad you've joined us. Parents need the support so much! I hate to think about my own children having to go through this disease. My heart goes out to you. :hug:

Please check out our Parents Sub-forum as I feel that it could really help you to cope with this. It's a big load to carry watching a child suffer. But you're not alone.

I agree with Kimmidwife about getting a counselor involved. I believe that Kyle can really learn to accept what he's going through and not wish so much for death to take him.

Welcome once again. I hope to hear from you soon about the scope results. And good luck.
 
Hi Mato3 and :welcome:

I'm so sorry to hear of all your boy is going through...:hug:

Where is his Crohn's located?

There is still a lot of room for movement as far as his meds as Budesonide and Pentasa are milder drugs.
If he hasn't had levels done for Iron stores, Folate and Vitamin D done it might be a good idea to have those tested as well.

As Jessi has suggested, pop over to the parent's forum and have a look around. There are some stickied threads at the top of the forum that contain loads of info, please have a look at this one in particular...

http://www.crohnsforum.com/showthread.php?t=18415

My daughter went through a very tough period in her last year of school and I had her referred to a psychologist. At the time she said it made no difference but in view of the fact that she started studying psychology at university I'm not so sure! :lol: I certainly think it made a difference and in her case she found her feet again and hasn't looked back.

Sending loads of luck for the scope! Keep us posted on how things go.

Welcome aboard!
Dusty. xxx
 
Procedures yesterday showed slight ulcerations near sit if surgery and small bowel. Doc recommends that we begin remicade. We are waiting on the insurance company at this point. B12 shots to begin right away. Back to work for me today and school for Kyle. We have been out since the 9th.
 
Thanks for the update, fingers crossed they can get the Remicade started quickly, perhaps bug the insurance company on a daily basis about this? Has Kyle said how he feels about it?
 
Remicade to start on Wednesday. Fingers crossed. Thanks for all of the information and advise. Kyle is ok with beginning the treatments. He just wants to feel better.
 
Sending loads of luck and well wishes your way!...:goodluck:

I so hope Remicade has Kyle feeling on top of the world again, bless him. :hug:

Dusty. xxx
 
Crohns disease.....

Hi there,
Sorry to hear that your son was afflicted with this horrendous disease. He's right it is horrible. And to look at a person with Crohn's/UC you don't see what they may be carrying around, pain, hunger, exhaustion, etc. I have had Crohn's disease and have been living with it for 20 some odd years. What you learn with this disease is to live in the moment and for someone young that may be hard to do. Does he know about this forum? He maybe can just browse and not join in on the conversation, I think there is a teen section even.... It helps just to see that your not alone and others are going through simiiar health struggles, because one thing you can feel is alone with this disease. And it gives you some ideas that may help with your own disease. Good luck to you and him......:)
 
The remicade treatment went good yesterday. He was up until 2:30 this morning though with stomach cramping. He also had a little diarrhea. how long does it take for this to work? Kyle is home again from school. Missed a lot of school. It is time to talk to them about getting him a tutor to help catch him up.
 
Hi Mato - sorry to have missed this thread! (I was on vacation last week)...anyway - what doctor/facility do you go to? I go to Albany Med and the GI clinic there....also get my Remicade infusions there....

As far as how long it takes to work - it can vary, some people start to see results in only a couple of days, others may take a couple of weeks or more.

When is the next infusion scheduled for? He should be on the loading doses, correct?
 
Pasobuff, we also go to Albany med and see dr qualia. Also have had surgeon dr cenete. We are in the beginning doses so we are going back in 2 weeks. Deb. 8th. I hope this helps him.
 
Pasobuff, we also go to Albany med and see dr qualia. Also have had surgeon dr cenete. We are in the beginning doses so we are going back in 2 weeks. Deb. 8th. I hope this helps him.

Hopefully it will help him! I see Dr Bartholomew (my primary GI), but also see Dr. MacDermott. I don't know Dr Qualia.....have seen Dr Richter when I was hospitalized once there.....

My next infusion is Feb 27th - I try to go on a Monday (since they don't do Fridays any more! :frown:) - at lunch time so I get half a day of work in before that....

The nurses there I've found to be very nice.....although I've gone through a few over the years!
 
Thanks for the update, hopefully Kyle will feel better in the next day or two, as already mentioned is varies from person to person on how quickly it will kick in. Keeping fingers crossed for him.
 

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