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My 17 year old daughter was diagnosed with Crohn's disease 3 years ago.  She gets constipation instead of diarrhea. She had major surgery and has had numerous complications and numerous hospital stays.  She is currently suffering from a lot of joint pain, low grade fevers, stomach pain and chronic fatigue.  She is not having a flare up because she recently had an endoscopy and colonoscopy but has missed a lot of school since the 1st of the year because of all the other symptoms.  We love our doctor but feel like he just keeps adding more and more drugs. 

We went to another hospital in Boston for a second opinion but didn't really like the doctor.

Last night I cried myself to sleep because I feel that as a mother I should be able to help my daughter have a better quality of life.  She thinks her doctor doesn't care about her anymore because he can't make her feel better.

I would love to hear from anyone who has had similar symptoms and what they have done to eliminate the joint pain and/or chronic fatigue.

 Reply posted for cscott764.

I have been having a flare up for about a month now. With the symptoms just progressing. I was on prednisone when I was first diagnosed which was about 3 yrs ago and I swore I would never go back on steroids, I didn't like myself very much when on prednisone and didn't like the side effects either.. But I am hurting so bad and my bowels are out of control that I need something to get this under control. I have been bleeding anytime I feel like I'm having a bm. I have had blood clots that are so big I thought they were just loose bm. The doc started me on "ENTOCORT EC" and I find it is helping so I'm not completely stiff and the pain has minimized. BUT....... I am so mean, I find myself disciplining my children more sternly and picking fights with my husband. I am also having unexplained crying spells. I am not a crier so I know its the medication.  My joints ache so bad and I can't sleep at night but I am exhausted all day. I have only been on the new med "Entocort EC" since 5/15/09 Just 6 days ago. I also have a agonizing pain on my left hip that comes and goes. Sorry to sound like such a whiner but I just need to get things off my chest. I feel so bad when I complain to my husband about my symptoms. So I bottle them up inside. Has anyone experienced what I'm going through?  Anyone on this med. and experience any of these side effects?Oh ya and I itch so much! I am on quite a few other meds. I am also on Asacol and have been since 1st diagnosed. Any suggestions about the joint pain, fatigue!!, swelling of my hands and feet? Its great to have a place to vent. Thanks in advance for any advice anyone can give me.

 Reply posted for Mom1466.

My daughter, almost 11, was diagnosed when she was 7.  She too suffers with chronic fatige, low grade fevers, stomache cramps, skin rashes and joint pain.  My grandmother, who suffers from horrible arthritis, is the one who's advice worked the best.  She told me to use Vicks Vapor Rub.  As crazy as it sounds, it's worked for my daughter.  Whenever her "bones start aching" as she puts it, we put Vick's on her, and usually by the next morning her pain is gone.

On a side note, my daughter has been off all meds since last fall.  While she still has the low grade fevers, stomach cramps, skin rashes and joint pain, her energy level has jumped tremendously since going off the meds.  I've taught her, and it's great advice for parents as well, to take it one day at a time.  If you can't handle a day, take it one hour at a time, or a minute at a time.  

We've learned a lot of different coping skills over the past 3 1/2 years, and it's different for everyone.  Strength of mind is a powerful thing.  My daughter is one strong, brave little girl, who's had to grow up too fast. 

 Reply posted for Mom1466.

I was taken off remicade due to pain and fatigue. After testing the doctors discovered that the remicade was causing a chemical induced lupus. Ask your doctor to check your daughters ANA levels.

I hope this helps you.

 Reply posted for Mom1466.

  Hi, welcome to my world!  My son is 17, diagnosed over a year ago.  Has joint pain and chronic fatigue.  Goes to a pediatric rheumatologist also, has Raynauds Phenomenom.  So many things connected with Crohns, it never ends.  Feel the same way as you.  I find humor though, goes a long way and try to remember that, although its hard sometimes.  My son also has constipation and not the typical symptoms of Crohns.  No meds have worked yet, and the tests never end.  We also, go to one of the best pediatric GI doctors in the country and really like him, but sometimes my son thinks he isn't listened too.  Just very frustating!  Us moms have to hang in there!  If you want to e-mail me let me know via this.

 Reply posted for Mom1466.

See if you can get her to a rheumatalogist for the joint pain.  Reactive Arthritis is, as I found out today, very common in patients with IBD. 

 Reply posted for EZ.

Funny you should suggest a support group - I facilitate a support group for parents of children's with IBD.  I guess right now I need the group more than my other parents.  It happens!  I did take her to another doctor, but since we didn't like him, we probably won't go back.  I will take your advise and keep on looking.  She had a really bad week, hasn't been to school yet, last night vomitting, a lot of stomach pain, and joints aching so bad.  She did feel a little better today.  She starts a new drug next week - Cimzia.  Not thrilled about that one either but we really need to get her off the Remicade.

 Reply posted for JenB2004.

Hi Jen,

Thanks for the encouraging words.  Her doctor has been very good about checking her blood for everything under the sun and put her on vitamins.  She has been enemic in the past but not now.  Sounds like your mother and I have a lot in common.  I am always trying to think of things to do with Emily and cheer her up - painting her room, buying new bedding, shopping, pedicures, anything I can think of to take her mind off her health issues and cheer her up.  She has been robbed of her teenage years.

 Reply posted for cscott764.

My daughter's doctors are not really saying that it can be a side effect of the Remicade that she has been taking for nearly 3 years, but I believe that it is.  The Remicade worked well in getting rid of the flare ups but all of the other symptoms have progessively gotten worse over the last 6-8 months - joint pain and chronic fatigue being the worst.  I have spoken to several other people (with Crohn's) who have had similar symptoms and their doctors took them off Remicade right away because they believed that it was a side effect of the Remicade.  It works differently for different people.  It certainly helped her in the beginning when nothing else worked.

 Reply posted for Mom1466.

Hi again,

Just had another thought...have they checked her blood levels?  If her hemoglobin is low then maybe anemia is causing fatigue.

Jen

 Reply posted for Mom1466.

Hi there!  I was diagnosed with CD in July of 2007 (I was 27).  I believe I had symptoms since I was 14 years old, I just never knew they were all part of a chronic disease.  My mom and my husband were in the hospital room with me when I was diagnosed.  They both cried, but I didn't.  They both said they wished it was them and not me.  I'm not a mom myself, yet (I just came off Entocort so hopefully if all stays well I will be by the end of the year ), but I can relate your to your empathizing with your daughter by the support I get from my mom.  It truly helps! 

I've never been one to want to do chores.  And if the motivation ever came then I never had the energy.  Last week my mom helped me do some dusting and mopping.  After three hours or so my knees and back were stiff from climbing and bending.  I was also really tired so right after she left I took a two hour nap, which I meant to be just one hour.  Before I was diagnosed, I thought the stiff and achy joints were from running track on the second floor of my highschool which was concrete and tile.  Now I wonder if it was Crohn's activity too.  I was the most tired and most achy right before I went to the ER and was diagnosed (I had an abscess).  It seems strange that your daughter's extraintestinal symptoms are getting worse though she isn't flaring accoring to the endoscopy and colonoscopy.  I've read that inflammation can release a protein called cytokine that causes fatigue.  As long as you go with your daughter to doctor's visits, help fundraise for the CCFA walk, etc... she'll know you are doing your best to help her get better.  An MD doesn't have to stand for Medical Doctor...it can also stand for Mom's Degree or Mom's Darndest

Take care,

Jen

 Reply posted for Mom1466.

My 18 year old daughter was diagnosed at 16 with UC.  I have taken her to 3 pediatric docs.  Two were general GI and one IBD specialist.  Now that she is 18, she wanted to go to an adult IBD specialist.  So this is her 4th doctor (not counting her pediatrician).  It was very hard finding a pediatric GI doctor.  It seems like there are more adult GI doctors.  Do you have any learning hospital like in a University that may help you find a specialist for IBD?  I know how helpless as a parent you feel when you see your child in so much pain.  There are support groups for kids that may help.  CCFA can help you find a support group.  Another thing that may help  for school is a 504 plan.  You might want to look into that.  I don't know if she'd want to read any of these posts.  My daughter liked to do that too.  Another thing is that there are many college scholorships for kids with Crohn's.  My daughter has gotten episcloritis (inflammation of the eyes) which is something that UC patients sometimes get like joint pain.  I hope she feels better soon.  I hope she knows she is not alone in this.  Please keep us posted to let us know how she is doing.

 Reply posted for Mom1466.

joint pain and fatigue are my biggest issue now also. i've had crohn's for a year, i am 20. it started out with just intestinal issues. but now my chronic fatigue and joint pain have surpassed greatly any issues i have with my stomach. when i was on the medicine sulfasalzine to control my inflamation, i believe it also helped alot with my joint pain. its a drug that is used for reducing inflamation but can also be used for arthirtis and stuff.  do you have any idea what exactly causes the joint pain? im going to the doctors here in the coming weeks. but they've never said the exact cause of the joint pain.....like if its arthrits or strain or whatever it may be.