New to the forum - daughter has Crohn's disease

Hello everyone. I'm brand new here, and this is my first post. I was perusing the topics on this forum, and this question caught my attention.

My daughter is 10 now, but first got sick when she was four years old. Everything I'm reading that's been posted by others sounds very familiar for us, too.

Here's my comment/question, though: It's my understanding from speaking with our doctor that if a Crohn's/IBD patient is still having pain they are NOT in remission. Our doctor said that remission is achieved/reached when ALL the symptoms of IBD are gone/controlled, including pain.

We've been through pretty good periods of time where blood tests were all good and there has been no diarrhea or bleeding, but the pain has NEVER gone away, and therefore, my daughter has not yet experienced remission.

What is the general concensus on this forum about pain and remission?
There have been many times I have said that if I had to choose between getting rid of all the other issues with Crohn's or getting rid of the pain, I'd choose to get rid of the pain. It's so hard to see your child living with the constant threat of pain looming.

Hi Marni's mom

I don't care what they call it, if your child is in constant pain, they need to adjust treatment. No one should have to live with that, especially a child.

I hope a monitor will come along and move your post to a new thread so more will see it and respond. Good luck and welcome!

Hi Marni's mom and welcome

How would you feel about me copying the post that you just made into its own thread as well? I'd love for you to get even more opinions. If you'd prefer not, no problem. I just thought I'd ask

Thanks Dexky. No worries.....our doctor is on top of things and is always tweaking her meds to try to get the pain to go away. My comment was mainly that I'm curious as to whether other doctors are calling it remission even if pain persists, when the other symptoms are under control. Our doctor says no, it's not remission if she's still hurting at all. Personally, I am skeptical as to whether she will ever be pain FREE, but if she just experiences cramping occassionally, I think she'd be happy too.

C's GI describes remission as not only having no symptoms but also full mucosal healing or deep remission. He is the same as your GI in that if C is experiencing pain then he is not in remisiion. C was diagnosed early last year and he have not reached remission by those terms yet. C does go long periods of time with no symptoms whatsoever, no pain included. But, like this last time, about a week before infusion all of his symptoms start to return. So, we are still tweaking Remi schedule and recently added MTX.

Is the pain she experiences due to cramping? If no, can you describe the pain?

Actually, David, she has a wide variety of pain "types". Sometimes it's cramping, sometimes, she says it feels like needles sticking her all over, and sometimes it's diffuse pain in her entire abdomen. She differentiates her pain as Crohn's pain and bathroom pain where the Crohn's pain isn't a sign she has to go to the bathroom. I'm sorry I can't be more specific, but that's all she tells me. I also think that after five years, she's desensitized to a lot of the pain and just feels it, but doesn't say anything. When she was a preschooler and first got sick, she would scream from the pain. It sounded like cats in heat sound outside at night if you've ever heard that sound. It's kind of creepy.

But, of course, she's older now, in 4th grade, and handles it better. These kids are real troopers!

Clash, it's nice to know other doctors consider pain as not being in remission...I'd hate to think some of them feel that if all else is okay, then the patient should learn to live with the pain.

When was the last time she had a colonoscopy and some sort of imaging study such as an MRE? And does your doctor track inflammatory markets such as ESR, CRP, and fecal calprotectin? If so, how are those numbers trending?

Sorry to hear about your daughter. My girl just turned 4. She was dx a few weeks ago.
Her GI said "completely symptom free" is what he wants her at (remission). I would worry if there's pain, she still might be having damage done somewhere. My Grace has normal lab results even when she very sick. Her only marker is a raised LDH.

HUGS

"remission" is another word that seems to have many interpretations. I don't like to use that word personally. Instead, I gauge the disease as active or inactive. My current doctor likes to use the term "out of the woods". To me, these terms mean you are able to function pretty well and don't have pain, or other debilitating symptoms, and without taking Prednisone.

Here's why I hate the term "remission". When I was diagnosed in 1986 at the age of 18, I was hospitalized about 2 months later. My illness had spread throughout the entire large bowel, from the tip of the rectum to the beginning of the colon. I went home after 2 weeks of bowel rest and no surgery. I then started to taper off of Prednisone, but I could never get off it. During the next six months I was still very incontinent, was not able to gain much weight and about 80% of my hair fell out (which would grow back, and then fall out again - the cycle never seemed to stop). My family figured if I would just wear a hair piece, bring a change of clothes with me at all times and wear some adult diapers, then I could get on with my life- after all, I had been out of the hospital for months now so I couldn't possible be sick anymore. But then about one year after the first hospitalization, my fever returned and this time it didn't get any better without surgery which I then had done in September 1987. So, was I in "remission" after I was home from the hospital in 1986? I would say definitely not, rather the Prednisone was putting a lid on the disease well enough to keep me from having surgery, but certainly not well enough to count as a "remission". Was the disease active during this time? I would say no, the Prednisone was keeping it inactive. My doctor back then called it "burnt out Ulcerative Colitis". But ultimately, two hospitalizations about a year apart and no remission in between was a good enough reason to have surgery. After that surgery I no longer took any meds until finally being diagnosed with Crohns in May 2012. So, technically I had Crohns Colitis and after I had my surgery, I was then officially in "remission".

Our doctor says remission is when there is no pain, and no symptoms (blood in stool, mouth ulcers etc)
My daughter was diagnosed *unoficially* in 2009 at 8 years old with Crohn's. Her diagnosis was changed in 2012 to Ulcerative Colitis. Both diagnosis were done through upper and lower scopes with biopsies. She started meds in Dec 2009 and was a different child within a week. She was considered to be in remission until June of 2011 when two major upsets happened. We had our cat put down after he had a stroke, and then my Mom was diagnosed with terminal cancer (she passed 4 weeks to the day). Devynn ended up in hosp on morphine and was in a flare. They changed her meds in Mar 2012 and it did not help. They changed meds again in Nov 2012 and things have calmed down. She has only had 4 stomache aches since Nov (2 of them I believe were a reaction to milk and not her UC). They are saying if she continues to feel the way she is feeling now, she is in remission. *fingers crossed* That said, Devynn has normal labs even when she is flaring. The scopes are the only thing that tells them a different story.
You should check out our parent forum http://www.crohnsforum.com/forumdisplay.php?f=49 this is a discussion board for parents of children with IBD. You will find lots of support, experience and advice.
Good luck! I hope your daughter gets some relief real soon. Its so horrible to watch them in pain.

Marni's mom said:

I also think that after five years, she's desensitized to a lot of the pain and just feels it, but doesn't say anything.

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I know that's true, and it breaks my heart! On the one hand, I suppose it's good that it doesn't bother them as much but it's so sad that a child ever starts to think that pain is normal! I'm 48 and I know some pains are "normal" but I did not think that when I was a child!

David, she has had a recent colonoscopy and MRI, and yes, her doctor tracks all of the things you asked about. Marni gets blood drawn about once a month, sometimes every two weeks. Her scopes have never really revealed anything remarkable, nor did the camera pill (what a joy that was to have to do!), but the blood tests are always very informative.

Colonoscopy is a very dirty word in our family because a couple of years ago, when Marni was 7 years old, we took her in for a "routine" colonoscopy and her colon was perforated. This had never happened to her doctor before, and he was very freaked out. They called in the pediatric surgeon to do emergency surgery to locate and close the performation. She suffered a series of complications after the surgery which turned a "routine" procedure into a three-week stay at the hospital. Needless to say, recently when her doctor asked for another colonoscopy, I was very hesitant to say okay. The word alone makes me sick to my stomach! :-(

How have her blood results and fecal calprotectin been trending?

How was her mucosa last colonoscopy? Fully healed?

You mention the, "needles sticking all over". Is that more in her extremities or in her abdominal area?

That's terrible about the perforation? The poor thing. I can't imagine how hard that was on your entire family.

Sometimes it's cramping, sometimes, she says it feels like needles sticking her all over.

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The needles sticking in her all over, is something my daughter gets! She has started getting pins and needles, but she also describes this too.

After some really great advice from this site we got her B12 levels tested, they are really low. This can cause this sensation!

Good luck!:goodluck:

Thanks! I'm going to ask the Dr to check on the Vit B levels. Great suggestion. Can I ask if that helped with the pins and needles pain?

David, I'm going to have to look at the lab results to tell you what her calprotectin levels are. I just don't remember right now. It's late and I'm beat. Marni was up all night last night, and therefore didn't go to school...again.....and is STILL up at 11pm because she's in pain again.

Sometimes I wonder if she will ever be pain free. Sigh.

Hi, she has only just started on the B12 jabs and is on 3 a week for a few weeks! She is still getting pins and needles but is definately better . Hope you get some answers soon x

Marni's Mom, is there any itching associated with the pins and needles? How are Marni's liver enzymes?

No, no itching that I've heard of with the pins and needles.

Where specifically does she feel the pins and needles? What part(s) of her body?