Colonoscopy...finally!

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momofkkcg

momofkkcg

Joined
Aug 5, 2011
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Well....I was here 2-3 years ago over concerns that my daughter might have IBD. When we saw the GI then they wanted to wait on the colonoscopy. She has had mesenteric lymphadenitis twice since May this year...which at first they thought was appendicitis. This prompted visit to a new GI in our community...which is good because I didn't have to travel. This GI decided to scope...upper and lower. I'm elated that finally my doctor is on board with my concerns...but now I'm scared to death!

She still isn't growing much...all of her classmates are taller and are developing. Now I hear people comment about her size. When she plays softball...other people around me talk about the "little one". Now I know it's not just me noticing. My parents came to watch her play ball this summer and my Dad thought they were at the wrong field because "these girls are too big...this isn't Grace's team".


Anyway...the scope is tomorrow. We are in the midst of the bowel prep as we speak. My daughter...although unhappy with the prep....is very excited that Dr. Sullivan is going to fix her tummy. Ugh...only 11 year old I know that looks forward to a colonoscopy.



I'm so nervous!

Thanks for listening!

Lisa
 
My 11 year old softball player also looked forward to her scopes this past January.

Good Luck. I hope you get clear answers!
 
We are getting there. First year is the hardest...figuring out which meds or combo of meds will work...but we will get there! Thanks for the well wishes.

Hint: Wipes...easier on the bottom than toilet paper!
 
Hugs
Mine was 7 at the first scope
He is 11 now ( but has had 4 lower scopes and 6 upper scopes ) so not a fan at this point
Good luck Tuesday
Hope you get answers soon
It took every bit of a year to find the right med for Ds and little more to tweak it just right .
 
All done! She has inflammation in her esophagus...a healing ulcer in her stomach and everything else looked pretty good which the doctor found reassuring. Increasing her ranitidine to twice daily and waiting on biopsies.
 
Yeah waiting for biopsies is a must but celebrate the good news so far. IDK a lot about your daughter's history but if you suspect IBD, remember it could be in the small bowel where the scopes can't reach. It is usually common practice to also undergo an MRE to look there if IBD is suspected. How are her inflammation markers? Has she had a fecal calprotectin test? It is a simple test and pretty good at highlighting intestinal inflammation. If all those are normal and scope is normal I would be good with it. Elevated labs and normal scopes would have me asking for MRE.

Other than that or growth maybe a visit to an Endocrinologist.
 
We have struggled with stuff on and off for years. Joint pain, erythema nodosum, fevers, eye inflammation, mesenteric lymphadenitis, elevated sed rate and crp, abdominal pain, pain a couple of bites into meals, and growth failure....at 5 she was 46 percentile...she is now 3rd.

Her scopes today were prompted due to recent mesenteric lymphadenitis and growth failure.

Last labs in March (she had 3 anaphylactic reactions...deemed idiopathic) were all normal.
She has never had the fecal test...or in MRE.

I have four children...she is my medical trouble maker.

Her Immunologist says we may never figure it out and just take things as they come. I've often wondered if we were missing Crohn's....but it seems that is not it...which is a relief!
 
Sounds very similar to my girl...joint pains (not arthritis), erythema nodosum, unexplained fevers but then no fever when there is an obvious infection, GI inflammation....sorta, abdominal pain, growth failure, random eye issues.

So sorry and hope you get answers soon!
 
Fecal calprotectin is an easy test. Poop into a hat, scoop a sample, put it in the plastic hat and wait a week to two weeks. Elevated? There is an organic rather than functional (think IBS) reason. If elevated I would want an MRE to completely rule out Crohn's and then you can move along what appears to be a very difficult and long list of possibilities. :ghug:
 
Yes they looked into the mast cells when she had her anaphylactic reactions...those tests were normal. The allergist was confident it was not food allergies...but nothing else could be identified. I don't know what egids is...I'll read on it.
 
I sympathise. My daughter just had her scopes, all looked good apart from a small ulcer. We are no further forward with answers, really hope you get some answers to help her feel better
 
So the biopsy results are in. She left me a message on my phone tonight....but will talk to more in the office tomorrow. (I actually work with her). Her esophagus is acute inflammation most likely caused by reflux. But her stomach shows chronic inflammation. Everything below that is clear. She wants to start her on Omeprazole...which we have been on in the past with no relief. But I'll try it again.

My question is could this be crohns in her stomach? I'm bothered by her short stature. If she doesn't grow soon she won't make 5 feet tall. I'm not sure if I should ask for more treatment when I talk to her tomorrow or just wait...yet again...and see if the omeprazole will help?

Sooo frustrating....
 
You can get Crohn's in the stomach.

I hope you get more answers from the Dr. Definitely ask about/voice your concerns about her growth.

How tall is she? I have always been short...only 5ft tall and fully grown. I am the shortest in my entire family on both sides. Just wondering if she will be naturally short or if the disease has stunted growth...anyway for sure worth talking about with the Dr. Let us know how it goes.
 
Both of my girls have Crohn's in their Stomach but the doc has been emphatic that this is not the cause for all their issues. I would push for a look at the small bowel at this point. You really want to rule in or out Crohn's and not be messing around treating only one piece of the puzzle.
 
She will be twelve in a couple months and she is 4'5". Her older sister is 5'2...so I do have short girls...but she grows so slowly about 1.5" per year...she won't make 5 feet.

Crohnsinct...what symptoms do your girls have? How was the diagnosis made? Is a biopsy with chronic inflammation enough? Or is there something else to look for? I'm confused...
 
82e2610bb04f1ba8c76f334272c8b567.jpg
. This is my daughter with her friends. They are all the same age and all standing on the same ground level. If the picture doesn't show...sorry...I tried! Lol
 
I also have small girls - one has Crohn's and one does not. Both are 5'2-5'3. The one with Crohn's did have chronic inflammation in her stomach but we still aren't sure if it was from Crohn's or from the meds she takes or reflux.

She was put on Prevacid which helped a lot and also took Carafate for a while. She had granulomas in her small bowel (terminal ileum) and inflammation through her colon which is what clinched the diagnosis of Crohn's.

Your daughter is small compared to her teammates. Has she ever seen an endocrinologist?
I agree that an MRE or pillcam to check her small bowel is a good idea.
 
No...she has not seen an endocrinologist. Her TSH is normal. Her bone age was checked as well and unfortunately that was right on target.

I just think I'm at the end of the road for now. I'll just give her the omeprazole and hopefully that helps. I just don't know what to do anymore without looking crazy. I do know one thing...my gut says something is up in this child's body. And whatever it is...it's tricky.
 
Have you tried supplemental nutrition ( boost kids/pediasure)
That can make it easier for kids to digest ( burn less energy converting it to nutrition ) and allow them to gain weight /grow .
Even kiddos not in remission can get there with increased levels of formula
If she has something else going on it might buy time while she is still in her growing years.
( ask her Gi or ped first ;) )
 
I was just sitting here thinking about trying that again. She starting refusing to drink it when she was younger. Maybe now she would drink it again. I'll ask her doc tomorrow and see what she says.
 
There are a whole bunch of flavors she could try. Cold shakes are easier to drink for my daughter and using a straw helps. We had her drink Peptamen Jr and then Neocate so comparatively Boost and Pediasure tasted great!!
 
Well I guess it could be that she is just meant to be smaller and she is growing albeit only a little bit but I would really like to cross IBD off the list entirely and in order to do that you really have to look at the small bowel.

Inflammation with biopsies are usually enough but the biopsies have to find evidence of Crohn's...granulomas for instance. Not saying that if they don't find granulomas that it definitively isn't Crohn's as the biopsy could have just been taken rom a spot where there weren't any. It is tricky.

While both of my girls have Crohn's in their stomachs it was pretty much a non issue as far as dx as my older daughter's colon and rectum were a mess and my younger daughter's TI was the real problem spot. So I think those other areas really drove the dx and treatment. My younger daughter had stomach issues ever since she could talk. Also had and tends to still have constipation. When doc showed me the pics of the stomach and said it was filled with Crohn's like ulcers I said, "ahh" but he followed with, "but that isn't what is causing the pain" IT was the TI.

So sorry I can't offer more guidance but I would push the doc while plying nicely with the drugs prescribed.
 
I spoke with the doctor this morning. We have a plan for now...but I need to make some decisions. What she did tell me today that she didn't mention on the message last night was that she does have inflammation on the small bowel biopsy as well. She doesn't think it's Crohn's...but she can't say it's not with certainty. She said we can do an MRE or camera pill now...or wait. She changed her mind and decided to start carafate. She also took a closer look at her growth and thinks we should also see an Endocrinologist. She thinks most likely she is in a cycle of having pain while eating...so then she doesn't eat much...which makes her tummy more irritated. She said I could try a supplement of pediasure if I want. She also wants to see in detail her calorie intake.

Sooo...I guess I could wait to do the MRE...she didn't offer it but said we could when I asked. I just feel uncomfortable when the doctor doesn't suggest certain tests...but seems ok with it when I ask. I should probably just relax and let the doctor decide what's best.

Did any of you have to ask for tests? Or were your doctors pretty much on top of it?
 
Our first GI ordered some tests, but when those came back normal (or indeterminate) she took a wait and see approach. I was fine with that as long as A was feeling okay, but once she became obviously ill I became impatient and wanted something done. After a few years of "waiting for her to get sicker so it would become more obvious" I found a new GI. Our current GI promised me at out first appointment that he would figure out what was wrong with my child and he did. We did wait and see at points, but he managed her symptoms well and consulted with other doctors until we figured things out.
 
Oh my goodness! I so identify with the "waiting for her to get sicker" statement. We did ok for a couple of years but since last December we are struggling on and off. December and January were tough with anaphylaxis three times...allergist thought it was something autoimmune but tests were normal. Things quieted until May with mesenteric lymphadenitis and an appendix scare....then quiet for a month...then feeling crappy again in July...and not quite back to normal since. We can never seem to nail anything down as the cause. I'm pretty satisfied with how things are going with this doctor....so we will see how she does.
 
The not knowing is awful. We searched for answers for 9 years, and we're still searching for a more specific diagnosis and prognosis. Some kids, mine included, don't fit nicely in any one box. We've seen 3 GIs and 2 Immunologists to get where we are right now.

I'm glad you feel comfortable with your doctor, just don't be afraid to seek multiple opinions. I trust our GI more than I've ever trusted a doctor, and he's sent us out of state for another opinion at a larger IBD center, and also had us transfer Immunologists out of our current hospital. A really good doctor knows that he/she can't possibly know everything and searches for answers using every possible resource (in my opinion). Some kids follow the textbook, but mine (and possibly yours) has chosen to write her own.
 
My older daughter was way to sick to wait so all tests were done when she was admitted to the hospital.

My second daughter had a clearly high fecal calprotectin test. We waited 2 weeks and repeated test. Still high. At that point GI gave us the option to move forward with scopes or wait two months and retest. We deciding we didn't want to wait but that is a personal decision.

Has she had the fecal calprotectin test? Can't remember if we mentioned it to you. It is pretty specific to intestinal inflammation. If you did that and it came out normal then I would say waiting wasn't a ridiculous request. Elevated and I would move to pill cam or MRE. Even if it isn't IBD, intestinal inflammation isn't normal and you should move to find out what it is from.

The thing with Crohn's and her age is, Crohn's likes to attack growth. You only have a certain window for growth. It would be a shame to wait and find out too late that it was Crohn's all along and you are behind the eight ball (this happened with my second daughter). Not to mention the risks you take with leaving the disease untreated. Simmering inflammation just keeps doing damage and you may end up in a more dire situation.

Silly question but when they did biopsies, they checked for Celiac right?
 
Good luck with the omeprazole, that's what we are stuck trying again too. Hope it helps. Not holding out much hope here either
 
We are in Mankato MN...a couple of hours from Rochester mn Mayo. I asked her GI about the fecal protection test...she said she would order it if I wanted...but it's not as accurate with stool that's not loose. And she doesn't have loose stool so I decides against it. We will wait on the MRE unless she becomes more ill. If she is not improved at all in a month we will do MRE at that time.

My 21 year old daughter had some pretty severe symptoms as well about a month ago...but feels well now. That is concerning as well. She couldn't eat and vomited when she did...got an eye infection and a swollen knee at the same time...but says she feels fantastic now.
 
I was diagnosed with human growth hormone deficiency when I was 13. I was diagnosed with Crohn's when I was 14, this January. It turns out that the two are related. And it makes sense. Those who have intestinal disease have more difficulty absorbing nutrients and don't grow as much. I was 15 this June when I had my surgery and I was 4'10 and 80 pounds. Since then, I've grown 2 inches and gained 35 pounds (which is a LOT for two months but it's healthy for my weight). As soon as I was treated and had surgery to remove my diseases portion of my ileum, I started growing. It could just be genetics too though, how tall you you and your husband? Maybe she just hasn't had her growth spurt yet. Best of luck to you:)
 
I would talk to her GI doctor about your concern with her growth if you're worried about it. Or consult a endocrinologist. I take shots every night with my human growth hormone and it definitely was helping even before my surgery. They are virtually painless so see a specialist and maybe have a few tests done.
 
The GI did refer to Endo. So we will see if anything turns up there. Right now she is almost 12....she is 4'5" and 68 pounds. Barely on the growth curve at 3%. My husband and I aren't real tall...5'6" and 5'7"...so it is possible she is just going to be little.
 
But what % was she around age 2 on?
Is her curve flat lined?
Kids are growing machines
But they stick to their curves
Weight /growth stalls first
Then cognitive ability
Then organ damage
That is why poor growth /weight gain has to be looked into
Can she gain if given enough calories?
Or is it the type of calories etc...
 
I know that growth for my daughter has been a concern due to the size of my husband and I. We are not small people, yet she is tiny. My husband is 6'3 and overweight and I'm 5'9 and average weight. A is 10 and she's 52 in (she recently had a growth spurt!!) and 58 lbs. If we were both short and thin I doubt any red flags would have been raised.
 
Soo....she was in the 50% until the turned 5...then from 5-7 she had fevers and joint pain and a bunch of other stuff. She went flat on the growth curve and picked up growing again at the 11th percentile....so she grows but slides down the curve ever so slightly. I've hounded on the for years...being told that we (her parents) aren't exactly tall. The GI took a good look at it...and that led to the scopes and endo referral...

We started carafate and a calorie diary and supplements. GI feels it's possible her tummy hurts so doesn't each much...then her tummy hurts because she doesn't eat much...a cycle.
 
Well we saw the endocrinologist last Tuesday! He gave her gold stars in that department! No testing needed he said. GI doc called to see if I wanted to do the MRE or have her swallow the pill cam...so we decided on the pill cam. That is scheduled for the 28th. Hopefully we get a good look at the small bowel and we can figure out what to do with her tummy...crohn's or not!

Thank you everyone! I really appreciate your support and input! It's been a long time wondering, being patient, having concerns come and go, and asking questions!
 
Got the pill cam results today...she does have one ulcer in her ileum. Dr still can't say if it's Crohn's or not being there is only one ulcer. She will start some treatment as if she does have Crohn's. Starting with budesonide...some labs and another appointment next Tuesday. The labs are IBD serology...which I thought we had done at some point...but Dr did not find those results in her records. So not sure what to think...still hoping it's not...but am feeling the ulcer sealed the deal even though it's only one? Anyone else have a similar experience? Maybe it's just a mild case? Maybe it's not Crohn's? Ugh....
 
I don't see how the esophagus/stomach issues and the ileum ulcer are not enough to point to Crohns, but then I'm not an MD either, so... The fecal calprotectin test is accurate on stools that are not loose, how ridiculous to say that ... What's her bloodwork like? SED rate? Has the omeparozole helped at all? How's her appetite and energy levels? Is this a pediatric GI doctor? I'd get a 2nd opinion. Hope you get it sorted soon.
 
Not taking omeprazole at the moment. Zantac twice a day, budesonide once daily, and cetirizine once daily (cetirizine and Zantac were initially for her idiopathic anaphylaxis). Her GI thinks it's "possible it's a mild case if Crohns" but doesn't want to jump to that conclusion with one ulcer in the ileum. She treats Peds patients and adults. My daughter is always back and forth with energy, appetite, and pain. Past few days have been well. I guess it's ok that she doesn't want to label it just yet...as long as we are taking steps to help her feel better and grow! Her labs have not been checked recently. Her last sed rate was in March and was normal. Metabolic panel was good with slightly high calcium. Curious to see what the IBD serology shows...she says it will tell her if my daughter is predisposed to IBD. Another piece to the puzzle the GI says...
 

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