Probable Crohns Mom - bundle of questions & nerves

[imwood]

My daughter Rosalyn, 10, began with episodes of vomiting & extremely watery diarrhea (no solid stool at all, just brown water & some undigested food) around Thanksgiving. The episodes happen about once every 5 days to 2 weeks, and only last a day or so. They are accompanied by severe abd pain. She has lost about 2-4 lbs.. (sometimes gains some back, but loses it again). They seem to be triggered when she eats "junky" food for a few days - which she has a lot more of at her Dad's house. Her abd will become tender to the touch in certain areas - llq, in a particular spot for 3-5 days.

After 8-10 episodes, and 4 ER visits - 2 when she became severely dehydrated (vomiting 4-5 times in 2-3 hrs, and profuse watery diarrhea 6-8 times in 3-4hrs), and 2 when the pain became extreme (she went 2 days with a fractured arm before her gentle guarding of the wrist made me think maybe she really hurt it - this was the only sign that something was wrong, never a tear shed, so she has a high pain tolerance) enough that she was hollering before she was finally admitted for 4 days of testing.. CT scans, barium swallow, ultrasound, and endoscopy/colonoscopy all came back VISUALLY NORMAL. Ped GI told us "cyclic vomiting syndrome - get used to it" - from the moment we were admitted, bc she didn't have bloody diarrhea! Which was frustrating, and which I did not believe for one minute, for a variety of reasons.

We went to a Ped GI in our state (hospitalization happened two states over, on vacation) upon discharge, who upon receiving the biopsy results from the colonscopy believes she is in the early stages of Crohn's disease. While visually the colon was beautiful, there were miscroscopic changes indicating all is not well. Cells of cryptitis, as well as lymphocytic aggregates in the TI.

Additionally, she has had joint pain in the knees & ankles since 2nd grade. She fought & won the battle against Lyme Disease at 8yrs old which was already a rough road for a little kid, with a lot of crappy symptoms. We were told the aching joints were likely arthritis as a by-product of the Lyme Disease, since it attacks the joints. Now, this ped GI believes it is just as likely that it was the Crohns starting up. SHe's also had ugly painful mouth sores since she was a year & a half old. Big red flat sores inside her lips & on gums with deep holes in the center. I never knew what they were. Oooohh. Now it's making sense..

My younger brother has Crohn's, and has had six inches of intestines removed. He also has ankylosing spondylitis so severe that he has open lesions on his bones. For Christmas, we bought him an electric hospital bed so he can sleep as comfortably as possible, and raise it up in the morning to get out of bed as easily as possible. Sometimes he can't reach his shoes to tie time. I have interstitial cystitis, an autoimmune bladder condition. Grandma had giant cell arteritis. So, clearly, we have autoimmune junk in our family.

Anyway, I'm just a little cranky and confused. She has long periods - two weeks - where she has no abd tenderness, no nausea, no diarrhea, and normal bowel movements. Her "flares" are only a day or two long, not weeks to months, like my brothers. She's never had bloody diarrhea. And will go a month at a time with no joint pain. Do your kids get like this? Or were they like this in the beginning, before things got bad enough for them to be diagnosed & ulcerations to show up in their bowels? She has no visible changes in the bowel - but microscopic changes show something is going on.

I'm just second-guessing everything right now, and in a bit of denial. She definitely doesn't look healthy, or feel the same as she did before. When she was in-patient, she wasn't allowed anything by mouth - even clear liquids - for four days, and the llq pain slowly went away, but came back as soon as they let her start eating. But now, after a week of eating, it's gone entirely & other than some mild stomach pain last night after eating, she feels fine.

I just don't see other Crohns patients as feeling fine most of the time, and feeling sick for 2 days out of every 14 or so. SHe is tiny - 15th or so %ile - and has only gained 4lbs and 1 inch in the past year and a half. But so am I! I'm 5'1 and 106 at 29 years old.

Delayed puberty - well, I don't think ANYONE should be wearing a bra at age 10.5, and we eat 80% organic/raw and avoid hormone-altered meats at all costs, so I've always said it's no wonder she's not entering puberty when her mutant classmates already are! LOL IDK.. maybe she is behind..

Am I in denial????

 

[izzi'smom]

While I don't have answers to any of your questions, I just wanted to say hello.

With autoimmune disorders already in your family, I would agree that her likelihood is probable. Diarrhea has to be bloody to indicate Crohns?? Crazy docs.

While Izz does feel "fine" many days, she still doesn't have chronic pain (thankfully). When symptomatic, she has d (sometimes bloody) and intermittent, severe abdominal pain (brings her to her knees) that doesn't last more than a minute. She occasionally complains that her belly hurts (a few 10 minute interims within a few days time) but often is fine. No growth issues and no joint pain here.

All that aside, I think each kid has symptoms as different as their treatment plan.

If it is truly in your heart that it ISN'T Crohns, get a second (and third) opinion...I am fairly certain the majority of people here did too!

((HUGS)) and good luck!

 

[imwood]

Well, I don't think she DOESN'T have it.. I just can't believe she DOES... lol.. make sense?
Through the past two and a half months of when-is-she-gonna-be-sleeping-beside-the-toilet-again anxiety, my Mom asked repeatedly if I thought she might have Crohn's, since my bro does.. and I reassured her repeatedly that of course she doesn't, bc she doesn't have bloody diarrhea! And a few times, I called my lil bro to go over her symptoms, and he reassured me that a) she's much too young to develop Crohns and b) she doesn't have bloody diarrhea! ................ Well knock me over with a feather! haha

Another thing that really bothered me was: when she had to drink that awful Maalox & gatorade mix in the hospital to prep for the colonoscopy, of course she moved her bowels a record number of times (she's used to "peeing out her butt" though - that's how the diarrhea is when she has the diarrhea episodes anyway).. they kept asking us if it was "clear" yet. It was NEVER "clear" but they went ahead with the procedure. It was yellow & mealy, even though she hadn't eaten for 48+ hrs beforehand and nothing by mouth 36+ hrs.. almost like wheat germ, but brighter yellow. Very bile-ish. Her vomit also always starts with a lot of dark yellow bile-covered undigested food from 12ish hrs prior (GI suspects gastroparesis)... even on biopsy pics, there are pools of yellow liquid all throughout. I've looked at plenty of other biopsy pics online, and while her tissue looks really nice compared to the angry inflamed tissue of active crohns, the pools of this stuff is just not right. But that lame-o GI in the hospital was useless..
When your kids do the colon prep, what do they mean by "clear" - do they also get reduced to this yellow substance, or do your kids literally have clear poo from the rear?

 

[imwood]

Ok, I actually pulled a growth chart from online and yep, I've been in denial. She was in the 10% for weight & height last year at 9yo. Now, at 10.5yo, her weight is dangling at the bottom of the 5th%, and that's with gaining a few pounds over the past week back to 55lbs.

Funny.. when their Dad was having wild neuro symptoms, I researched my buns off, I was convinced it was a brain tumor before the docs ever found it. And when we found out it was a brain tumor, I jumped it head-on with him, never denial. When daughter had strange symtpoms for months, we couldn't figure it out, followed from doc to doc, and when they diagnosed Lyme, I never had a moment's question. My own bladder disease, had problems for a year, and when I found out there was a name for the constant pain & infections, I was relieved, not questioning it.
Now with this, it seems there's a part of me resistant to it, even though all the facts add up. I guess I've just had enough of life-altering disease!

 

[kimmidwife]

The yellow substance with specks is normal. I think it is not possible to have totally clear poop.
I am sorry you are going through all this. Everyone here knows what you are going through and you are in the right place. We will help you as much as we can. I do agree with getting a second opinion and possibly another colonoscopy if you feel it is warranted. It sure sounds like your family has been through a lot. How is your husband doing?

 

[Tesscorm]

Sorry to hear that you and your daughter have to deal with this! I found it hard to accept when my son was diagnosed as it seemed that he was also missing some 'typical' symptoms. Since his diagnonis, I've learned that there is a very wide range of 'typical' symptoms.

Some of his symptoms were, actually, similar to your daughter's. He had very liquid diarrhea but no blood, minor (if any pain) and his symptoms would come and go. However, how his crohns presented would be a fever accompanied by diarrhea, fever would pass in a couple of days, diarrhea would pass a few days later and all would be fine for a few days or even a couple of weeks and would then start again. Prior to the fever and diarrhea, he had lost weight and had become pale. Once we started testing with his doctor, it took approx. 2 months to reach diagnosis - after barium x-ray, ultrasounds, stool samples, blood tests and two hospital visits. By this point he had gone from 145lbs to 127lbs. He was eventually diagnosed at the 2nd hospital visit, stayed a week and a half, given IV Flagyl and had a colonoscopy and endoscopy. (He had also noticed some mild mouth sores, however, had just started using a new toothbrush and his regular doctor didn't associate this with his other symptoms and suggested the new brush had 'too hard' bristles.)

It was certainly tough to accept the diagnosis! We did consider getting a second opinion but, in the end, did not. However, to be honest, part of the reason we did not follow up with the second opinion was because his treatment was Enteral nutrition therapy which has no side effects. At the time, I decided, as his 'treatment' would only benefit him by providing necessary nutrition, I could afford to wait and see how things progressed.

Having learned much over the past few months, I no longer question his diagnosis. He continues with the EN as a maintenance treatment and, so far, so good (I think). Who knows, I may seek a 2nd opinion if/when he requires additional medication just to be 150% sure as I know I will find additional meds to be a scary prospect (regardless of how much I try to prepare myself!). If it will give you relief or confidence to proceed with treatments, I would certainly go for a second opinion.

Good luck!

 

[imwood]

The ped GI we are with now in PA already wants to do another colonoscopy anyway. He didn't feel the other GI really quite looked & biopsied where she should have, esp since Crohns can skip around.. there were some cryptitis & lymphocytes in the biopsy in the TI, and he thinks if he biopsies the right area, even without visible ugly spots, he will find a "jackpot" of more. Neither the GI nor I are thrilled about putting a 10 back under, but I do agree with him about doing it right and getting as many answers as we can. He's also ordered Prometheus testing for Crohns & Celiac, which I guess is more sensitive than the hospital generic bloodwork that was done.

Their Dad is doing well. It is five years last month since surgery. Wow, with everything going on with Rosalyn, we didn't even remember to celebrate. Unfortunately our marriage didn't survive - he changed a lot afterwards, I changed a lot (being someone's nurse for a year+ can do that)... he had the tumor when we met & married and we didn't know it. His personality changed a lot, probably from the tumor - also from depression as he lost a lot of abilities to do things he loved. But we are still great friends, and honestly there are aspects that make us wonder if we could try again.. but it's too scary to think of the hurt it would cause the kids if it didn't work. And I know there are still major deficits he has from the tumor, that he can't even acknowledge he has (there's a -gnosia name for it, can't remember it) that I just can't DEAL WITH! We are still very much a team though.

 

[DustyKat]

Hi imwood and :welcome:

I am so sorry to hear of all your daughter is going through...:hug:

Well, I don't think she DOESN'T have it.. I just can't believe she DOES... lol.. make sense?

Oh my goodness, it makes perfect sense! When my daughter was diagnosed 5 years ago it was so bloody tough to come to terms with but over the years, because there is next to no family history, I had convinced myself she would be the only one. So when my son was diagnosed 12 months ago...well you know.

My daughter was never diagnosed with cyclic vomiting syndrome, she was diagnosed with abdominal migraine though, BUT she have cyclic symptoms just like your daughter. Early on her symptoms were one day a month but then for perhaps twelve months they were every 2 weeks almost to the day. She never had diarrhoea as a symptom but she would get upper abdominal pain, vomiting, headache and sore eyes. It would last day and sometimes it would take the next day to recover. Then she would be fine until the next time. In the last 4 months prior to diagnosis it started ti become weekly and then in the last two weeks constant. She also complained of aching knees.

Sarah was older than your daughter when diagnosed, 14, she was in very poor condition and it certainly delayed her puberty, she had barely started but 12 months post op and in remission she took off.

Are you in denial? Nah, if you were you wouldn't be seeking second opinions and keeping the docs on their toes! You may not want to hear those words Crohn's Disease, just as I didn't, but it doesn't mean you don't leave any stone unturned or advocate for your baby to the nth degree.

Good luck hun, I hope you have solid answers whatever they may be. It is still bloody hard but yet a little easier to bear when the enemy you are fighting has a name.

Dusty. :heart:

 

[Dexky]

Welcome IM! The mouth sores, joint aches, cyclic-vomiting (get used to it!!!, what an ass!!), family history...it all points in one direction! I hope Rosalyn doesn't have IBD but like Dusty said, if it is at least you'll know your enemy's name.

Good luck!!

 

[imwood]

Last night she mentioned she was practicing her back bend in the bathroom at school.. Why in the world were you doing back bends in the bathroom, dear? "oh, because I kept thinking I needed to poop but it just wouldn't ever come out. I was constipated. Happens a lot." ..nice how they just shrug these things off and fail to mention them when we're sitting there thinking they're SO IMPORTANT! I've been keeping a food & symptom journal for weeks! Hello girl!

Up at 5:30 this morning again w nausea & llq pain, on the pot for half an hour with a bowl in her lap bc she didn't know which end was going to start first.. neither end ever moved, and eventually things settled down and she went to school.

We ate Arby's last night, violating my rules but I had a board meeting so we were kind of stuck for choices & time.. the "old school" when my lil bro was diagnosed put great emphasis on diet (fats, glutens, raw veggies, etc) the "new school" I've read in some of the posts here seem to say it doesn't matter what you eat, you'll still have Crohns and only avoid things that will irritate you during a flare.. but I find it interesting that she was sick this morning after eating crap last night. Anyone else see an immediate connection between certain foods & symptoms?