new to crohns and need help

My 19yr old son was recently diagnosed with crohns disease and put on entocort and apriso.  His GI symptoms seem to be under control, but he has started having some serious symptoms and I was wondering if anyone had had problems with initial medications. He is having severe pain in his arms and legs to the point he can barely walk, he has a resting heart rate of 110 and usually up to 140. increased sweating. Drs have done labs and he is on iron, folic acid and b12. I cannot get any dr's to give me any answers. please help.

Yes! I totally understand you. I have CD for 20 years and sometimes I feel the same. Does he have a lot of diarrhea? Does he feels maladjusted to what is happening to him? I could give you two reasons for that, but before that I firmly say to stick to the meds, in due time they will help stabilize the symptoms despite is not a cure and there will be some good days, usually "grey" days and sometimes bad days.

1- Your son´s liver could be overloaded cause of meds

Drink 3 liters of bottled water daily.

Don´t ever eat a lot. Eat small meals at a time but make sure he gets the appropriate calories each day.

2- He´s in shock/panic and the body pays for that. I suggest without guile that you find a good psychiatrist with whom he identifies. Make sure he follows a meds/therapy solution, not only meds.

B12 and folic acid is very good. Iron only if he has anemia. Try digestive enzymes. That is one of my secrets. I wish from the bottom of my heart his recovery.

And don´t forget humor as hard it can be at times of suffering is a major relief.

Keep in touch.

Pedro Fernandes

Portugal, Europe

-------------------------------------------------

Meds:

B12
Digestive Enzymes (Solgar)
Asacol 4gr a day
Victan
Sertraline
Imodium
Paracetamol
Omega 3

and keep a positive atittude although it hurts. I cry too. Early mornings and nights endings are a movie terror for me but press forward and have faith a hope in a better tomorrow, week, month.

:)

When I was severely anemic my resting heart rate was always over 100. When I went to see my MD before my anemia was corrected they checked my pulse in his office it was 122 according to the DR this was due to iron deficiency anemia. I was also extremely low on potassium and folic acid.

Drew´s mom! How is his blood tests? Is his Crohn´s active?
CRP value? ESR value? Ferritin value? LFT value? WBC value?

Please see link below:

http://www.crohnsforum.com/wiki/Blood-test-codes-and-results-explained

I really want to help. Anemia as you said is slight, so his GI must see if there is inflammation or not. If there is inflammation Entocort and Asacol would do the job alone. He´s gone need Prednisone, Azathioprine or even Remicade/Infliximab if it must.

If he has NOT inflammation, well GI is going to tell you that is nothing he can do, like mine did. I suffer ever single day to this present day of chronic diarrhea (5 to 6 times) daily and pain. Yet I don´t have inflammation for years now. Don´t get angry or get me wrong, if his blood tests are normal then "I suggest without guile that you find a good psychiatrist with whom he identifies. Make sure he follows a meds/therapy solution, not only meds".

There are genetic/biological/enviromental/neurological factors that triggers pain with constipation/diarrhea rotation. Be strong, he´s going to need it. The mind as a very close relation with the guts for some people, especially people with CD.

If he has pain try to supplement his SMALL meals with drinks like ENSURE and avoid raw food. Let him take over the counter meds like paracetamol. I take 2x 1gr a day and helps a lot.

Kepp fighting. Don´t give up. I went to a half a dozen GI´s before I found THE ONE.

Hope I can help. I can remember and feel your words.

Honestly,

Pedro Xanca

kazbern, I know you are a veteran member but I do not agreed fully with you. I take for maintanance 4 gr a day of Asacol and the benefits surpass a lot the side effects. Actually I think I do not have any.

But it´s true also that one person is different from another!!! That´s a fact. Of course we should not overdose the meds. If the GI tells to do that in time side effects will show more often. That´s true too. But normally they are weak or mild.

Drew´s mom: Neurotransmitters have a lot to do with people that suffer with CD.

Xanca

___________________________________________________

B12
Digestive Enzymes (Solgar)
Asacol 4gr a day
Victan
Sertraline
Imodium
Paracetamol
Omega 3
Dioralyte

Thank you all for responding. It helps just to know we are not alone in our struggle. Andrew has been on this site alot today and he seems to be taking in alot of the information and trying to digest. I have researched apriso and the sideeffects are numerous. I know he is taking more than the recommended dosage,(his GI said " normally you would only take 4 a day but your inflammation is pretty severe so I want you to take 8 a day, it shouldn't bother you). He did well on it for about a month and a half. I have been very vocal with his physicians about something is wrong find the problem before finding CD. I have discovered from your post that I haven't taken that far enough, I need to be more vocal and teach my son that its ok to demand(politely unless not heard lol) information about his disease. The doctors did not tell us values on any labs all we got was cbc is normal iron is a lil low b12 is in 400 range, some of your labs are off but not severe. I have contacted his PCP to get me results from hospital lab test and good news his neurologist appt got moved up to Monday instead of november. we dont have answers yet but i am encouraged that together we will. I am thankful for a place my son can go and talk with people that have experienced his pain and struggle. Question tho--his GI symptoms are ok no D, no pain however in the ER the dr did a CT of abdomen because he saw something on the xray that he thought could be a abcess...after the CT came back they consulted surgery, they said he didnt need surg because they couldnt be sure what they saw and his GI exam was normal no tenderness to palpation of abdomen either. could it be inflammation without symptoms?

This is the son. I have pertty much figured out what i can eat and cant eat. i have not have the stomach pains or the diarhea in almost a month(ever since i started the apriso). The only pains i have been having is in my legs, feet, arms, and hands. My left foot has been numb for 2 weeks now, it also burns and tingles on and off. The doctors at the hospital told me it was perphial nerupathy but the did nothing about it. Nothing any of the doctors have done has helped, only pain meds help for the pain but its not a fix. i donk know if this is a symptom of the CD. if i could just get the leg and arm pains fixed i would bein good shape being i can barely walk and i am in college and can not attend my classes because of that.

I have learned how what i can eat and not to eat by trial and error. its been rough but i have it pertty much figyred out. i have figuer out what kind of diet i need to be on and everything. i am about to start expermenting with my meds to see if that is whats causeing all the leg and arm pain. but thank everybody for all the information it have got me thinking about what to make the doctor to test for and what i need to look out for.

Hello there. Here in Portugal is morning, a cloudy one. After Church meeting I can´t stop thinking of you and your son. My prayers are for you both too.

Kezbern is right. His GI should NOT give that dosage to him, it´s very heavy, it´s really 2x times higher than the normal. Another thing Kezbern is right is if he does not do well with a brand then try another, but at reasonable dosage. I would not although agree with total stop of the main core composition of brands like Asacol/Pentasa/Apriso or Generic which is MESALAMINE. Of course too much is bad but not taking the normal dose could not be good as well.

For maintenance you should take MESALAMINE with or without inflammation, if your Crohn is in the small intestine, especially in the ileum section (the terminal zone of the small intestine that junctions with the large) BUT at normal doses.

Once I get the idea to take off Asacol which I did at some point, for a few weeks I felt great, but then some of the symptoms returned and I got worse. I am 100% sure that MESALAMINE at the right dose is very helpful.

You´ve said in an earlier post that "his GI symptoms are ok no D, no pain however in the ER the dr did a CT of abdomen because he saw something on the xray that he thought could be an abcess...after the CT came back they consulted surgery, they said he didnt need surg because they couldnt be sure what they saw and his GI exam was normal no tenderness to palpation of abdomen either. could it be inflammation without symptoms?”

That is not normal, one Doc says that he saw something on the xray that could be an abcess and the other Doc says he couldn’t be sure what they saw? That´s weird. Is there anything or there isn´t. It´s that plain and simple. They can´t be stuck in the middle. Is there anything or is there not.

There are a lot of people who do NOT have inflammation but still have symptoms due to bowel strictures or abcesses. I myself have no inflammation but have bowel strictures and scar tissue due to previous inflammation that gives me pain, diarrhea and tiredness. But that is me. His GI has to check for real evidence of abcesses or bowel strictures ASAP. MRI exams are very good to detect that. He might consider a Colonoscopy that reaches the ileum.

Hope I´ved help. Have a nice Sunday. A huge hug for Andrews.

Things will get better, probably not as you want, but they will get better.

I´m 36 years old. I was diagnosed at the age of 16. Me and my parents went through “hell” , I got 4 ressections (removal of parts of the small intestine) I do not have the job with which I dreamed ( I was a B+ student) but with time I found my equilibrium, not a cure, but a state of joy although there are many things I cannot do as I wanted to. I started to take pleasure in amidst of pain, on small things of life.

I´m married with a great and supportive woman and have two great kids. If you asked me 15 or 20 years ago if that could be possible I would have answered on the spot NO.

Now Andrew “politely” as you can go find your answers amongst Doctors. It is your right, but keep in mind it could take some time. Press forward. Wish you and your mom the best!!!

Pedro "Xanca"

Post Edited (xanca) : 10/21/2012 5:26:25 AM (GMT-6)

Sorry to hear about your son, "DREW." I cannot help you with all of his issues going on right now, but I will try to inform you on what "I" personally have researched, and have been through myself,along with my brother. First things first, the GI tract is one of the most difficult areas of the body to diagnose to "ONE" specific diagnoses! You, and your son, have just entered into a very long and painful journey of, "WHATS,& WHYS?" He will be a Person of experiments, and grueling test & Medications, until they find out what actually will decrease his GI symptoms. In saying this, he will without doubt, be having alot of different side effects from all of the medications he will be put on, but they should be addressed with his GI Dr. and then decided if they (the side affects) out way the benefits of controlling his Intestinal Disease? I wish you Both all the Best, and I hope your son, "DREW" will get his disease under control soon with a good Dr. who is willing to listen to your sons needs, and concerns, and will do everything humanly possible in order to get him some relief .