Could this be crohns?

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nursejulieanne

Joined
Dec 30, 2012
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Hello, I have a 4 year old who is having a lot of bowel problems. We are seeing a gi and she is being treated for constipation but I am worried it is something more.
A little history: She has had problems with constipation since she was an infant. Even as a baby she would scream and cry and pass HUGE stools that would have blood around them at times. This continued and she has been treated with lactulose, miralax, senna, suppositories, enemas, you name it. I have tried fiber and increasing fluids, I have also tried more fruits etc.
It always comes back! She began to have a bad exacerbation of it about 2 months ago. She was crying at school, waking up at night crying with abdominal pain etc. We went to the GI doctor and I was told she was FULL of stool even though I had her on miralax and she had gone every day the previous 2 days. So I was told to add senna twice a day to the miralax. So the bowel movements are getting softer but the abdominal pain is just as bad!
I don't know if its the bowel meds, or if she could still be constipated or what? Her doctor is kind of black and white. She basically said there are only 4 causes of constipation besides just normal constipation. Thyroid, celiac, anal rectal malformation, or some sort of spinal malformation. We have ruled out all of those things so I don't know what to think!
My son was tested for crohns with a blood test I think it was, and she said that she only considered that because he had some bloody diahrrea at one time. So I am sure she will dismiss this for constipation.
Do any of you have any thoughts? She does also have reflux that is flaring right now as well. I am just desperate. I feel like I can't work until we get her tummy figured out as it was really making miserable!
 
nursejulieanne,
I'm so sorry you are going through this there is another mom on here, farmwife whose little daughter was just diagnosed with colitis and it seems like some of the same symptoms that she had.
While many doctors will tell you constipation is not common with Crohn's and that is true but you will find many parents of children on here whose children presented with constipation my own included, so it doesn't in and of itself rule it out.
You are her best advocate and there is a ton of good advice on her by those a lot more knowledgeable then myself. We even have a whole thread dedicated to undiagnosed kids, with parents just like you searching for answers.
I hope you find answers soon and lots of support here. There is someone pretty much 24/7 as we are spread across the globe in so many different time zones.
 
Welcome
Another kid with constipation as the primary issue .
Not sure where you are at but the three top ped Gi programs in the us are at Bch
, chop , and cchmc.
If you are having to give senna on top if miralax something is definitely not right.
Fwiw you can not rule Ibd in or out soley by a blood test or imaging.

A scope is the gold standard upper and lower for kids.
It was the only way my DS was dx.
Fwiw it wasn't until we had DS on the right med for crohn's - remicade
That suddenly his constipation. And need for daily miralax went away.

Even if its not Ibd - someone needs to help you figure out why.
I would reccomend cchmc
They deal with kids routinely who are outside the box even with their constipation
Did they rule out hisrsprung ???
Hugs

http://www.nlm.nih.gov/medlineplus/ency/article/001140.htm
 
Sorry to hear your little girl is not feeling well :frown: As a mother it is very hard and frustrating when our children are ill and I can totally understand why you would want to take time off work to be with her and care for her until these health issues are resolved. I wish you all the best and am sorry I can't offer and insight just hugs, healing thoughts and prayers to your little girl :ghug:
 
What JM said about constipation!

This doc said your son didn't have Crohns based on a blood test? I don't consider myself an expert or anything but I am pretty sure you need a heck of a lot more than a blood test to rule out or in Crohns...like some imaging....scopes perhaps?

Sounds like you may have come to the end of a road with this doc and may need to move on to another who may be just as passionate as you about finding answers for your daughter.

FWIW - I have a 13 year old with CD but my 18 year old was just like your daughter. Her constipation issues lasted well into middle school and were simply that...constipation. It was frustrating but all ended well. So it could be that but it could be a host of other things and you need a doc who will travel down every path with you with caring, empathy and a true desire to help her feel better.

Good luck and keep us posted.
 
I'm sorry you had to find your way over here. My daughter (11) has ulcerative colitis. She can go from being horribly constipated, to loose stool. There are a few kids on here who have with constipation issues. Keep pushing for tests, don't give up. This is a great place for support.
 
My little one who is being worked up currently also has constipation issues. I second the others in saying it sounds like time for a new doc and a second opinion. A the others said the blood test used for crohns is not very accurateand a colonoscope is considered the standard for diagnosis.
 
Last edited:
Hi and welcome!
As JM said my dear Grace was just dx after a year of fighting for answers. :dance:
She like yours tends to constipation. She also has had this since an infant.
The problems with our kids is they don't "fit the mold" in the GI's mind. They too young and IBD doesn't involve constipation. WRONG!

OK some more questions for you.
Does she have anything else? Allergies, reflux, joint pains, eye pains or skin problems?
You said she is flaring. What do you mean? How does she flare?

Also, just to state the fact again. Whether she has IBD (Hope she doesn't) or not. This is NOT normal!!!!! You and her still need answers! Please stay around.

We'll be happy to help anyway we can until you have answers for your little angel!:hug:
 
Welcome Julianne! I'm with the others^^. If your doc won't consider every possibility, ibd included, for her constipation, it's time for a second opinion or more til you get solid answers and a plan that is helping her. Good luck!!
 
nursejulieanne said:
She basically said there are only 4 causes of constipation besides just normal constipation. Thyroid, celiac, anal rectal malformation, or some sort of spinal malformation. We have ruled out all of those things so I don't know what to think!
Click to expand...

Then she received her degree via the bottom of a Corn Flakes box. :yfrown:

Sorry couldn't resist and welcome to the forum. :hug:

I am so sorry to hear about your little girl and all she is going through. What a worrying time for you. :(

You have received wonderful advice and can only add my support to my views of needing scopes and imaging done to rule Crohn's in or out and that the time has come to seek at least a second opinion.

Before signing off I will clarify my opening statement. :) Both of my children have Crohn's. Neither had diarrhoea. My daughter tended to constipation and probably the only reason my son didn't is because he received his diagnosis very quickly. I am very much believer in the higher you go with the disease the more likely you are to suffer with constipation. The reason being that the small bowel is just that, small, and so any significant degree of prolonged inflammation has the potential to cause narrowing to the point of near obstruction/obstruction for some. I am not suggesting that this is the case with your daughter but rather just pointing to the fact that there is indeed more than just those 4 causes for constipation and they don't stop with Crohn's.

Good luck and welcome aboard!

Dusty. :heart:
 
^Corn Flakes or Cracker jacks! I wonder if she got a prize!
I second the second opinion. Hoping that someone will hear you and that your dd is feeling better soon! :)
 
nursejulieanne welcome to the forum, glad you joined for it was the first thing I did before my daughters UC was diagnosed and they have helped me in ways my GIs and surgeons will never understand in regards to empathy and the day to day experiences of having a sick child with crazy rotating symptoms.

My daughter also had cronic constipation to the point of rectal prolapse. Many people don't even know what rectal prolapse is but once it comes on board it can be quite a problem. They can actually push out the rectum and colon while using the toilet, this can be very painful and bleed and require you to manually push it back in using the palm of your gloved hand. Does you daugther tend to sit on the toilet for longer periods and push at all? I am pointing this out as a bad habit that is very hard to break in a young child, bc I was there and it was a huge issue for us. If it is a habit try breaking it. Can't urge this fact enough.

We finally got a little better control of it when we were avoiding constipating foods and used the Miralax Avoiding potatoes, bananas, refined grains, sweets, mashmallows, dairy products for a couple of days and see if it improves the situation. Easier said than done I understand. We replaced and used soups, yogurts with good live cultures, Jellos, shreaded chicken, fish, salad, cooked with coconut oil, nutritional shakes, whole grain pastas, juices, fresh fruits/cooked vegetables and lots of electrolyte infused water.

There is way more testing to do for IBD than blood tests as stated by everyone else. Sometimes IBD can be completely silent and never show in blood testing, this is the case for many on this forum. Most kids arent cookie cutter IBD patients. There is such a huge symptoms list it can be overwhelming.

I hope you get your answer soon and I urge you to get a second opinion from another hospital if you can.
 
We have constipation here, too. And my daughter would also be constipated to the point of impaction within two weeks of a clean out while on miralax and senna...lots of it. Lots of tummy pain, sometimes blood, and her scope did show imflammation but no damage so they wouldn't diagnose it. They did put her on sulfasalazine -- and it worked GREAT. But then they took her off of it b/c her inflammation was considered "non-specific" and the doctors won't treat that long-term. My brother has Crohn's so it is really frustrating that they refuse to take this seriously.

We do have an MRE scheduled in Feb. but right now I am just downright over it. This is me to her doctors: :voodoo:

GL! I hope you can get to the bottom of it!!
 
Thank you all for your input! Here is a little more info. She does have reflux, has since birth when it was scary bad! She does have eczema that has come back this past few months as well. She has been waking at night complaining of her knees and legs hurting! Her half sister had awful growing pains so I chalk it up to that except it happens weekly. When we were at the GI doctors she looked at her bottom and noted tiny little tears around her anus also.

As for her sitting on the toilet, it is always such an ordeal. Without meds she will not go for 3 or 4 days, then when she finally does it will take 2 days with her sitting on the toilet off and on crying, screaming, pushing etc.
Then she goes HUGE hard balls! I usually end up giving her an enema at that point now before she goes so many days.

Since we are on the miralax and senna it is softer but she continues to sit on the toilet for a long time and even after she goes she will sit and tell me it feels like she still has to go while she is crying. We literally cannot take her places. We tried to go to pizza with my dad and she cried because her tummy hurt (she didn't have pizza she ate vegetables of her own choice because of her reflux) so I took her to the bathroom, where she attempted to have a bowel movement. She sat and cried for 15 minutes while I didn't know what to do because there were people waiting and there was only ONE stall!

Yesterday we tried to go shopping, she cried for an hour during our shopping because her stomach hurt and she wouldn't go to the bathroom in a public bathroom (probably because of the pizza episode).

The last time I tried to travel 2 hours to see my mom, she started screaming because her stomach hurt so bad, she was constipated. I had to take an exit, buy some baby enemas and give her one in a McDonalds bathroom!
Sorry, so long but this is really effecting our lives!

She woke up this morning and said her tummy hurt, like she does every morning!
Oh and I was thinking about it and it was a stool test they did on my son. Sorry, it has been awhile so couldn't remember. The GI said that he would have evidence of inflammation in his stool I think, and he didn't. He has a ton of medical problems, reflux, asthma, also has constipation, although it isn't as bad, an arrhythmia, dyspraxia etc. I thought my daughter would be my healthy one. But these stomach issues have all compounded this past few months.

We live in Oregon and I take her to Doernbecher. I guess I could look for a ped gi through Providence? Any other ideas?

Thank you again for all your support, it feels so good to have support!
 
Thank you for the diet advice, i will try some of that! She self limits herself due to her reflux. It really is sad, but she is becoming afraid to eat as she associates it with stomach pain. Every time she eats she says "it must have been lunch" etc. I am worried about the psychological effect of all of this.

Myreinhard said:
nursejulieanne welcome to the forum, glad you joined for it was the first thing I did before my daughters UC was diagnosed and they have helped me in ways my GIs and surgeons will never understand in regards to empathy and the day to day experiences of having a sick child with crazy rotating symptoms.

My daughter also had cronic constipation to the point of rectal prolapse. Many people don't even know what rectal prolapse is but once it comes on board it can be quite a problem. They can actually push out the rectum and colon while using the toilet, this can be very painful and bleed and require you to manually push it back in using the palm of your gloved hand. Does you daugther tend to sit on the toilet for longer periods and push at all? I am pointing this out as a bad habit that is very hard to break in a young child, bc I was there and it was a huge issue for us. If it is a habit try breaking it. Can't urge this fact enough.

We finally got a little better control of it when we were avoiding constipating foods and used the Miralax Avoiding potatoes, bananas, refined grains, sweets, mashmallows, dairy products for a couple of days and see if it improves the situation. Easier said than done I understand. We replaced and used soups, yogurts with good live cultures, Jellos, shreaded chicken, fish, salad, cooked with coconut oil, nutritional shakes, whole grain pastas, juices, fresh fruits/cooked vegetables and lots of electrolyte infused water.

There is way more testing to do for IBD than blood tests as stated by everyone else. Sometimes IBD can be completely silent and never show in blood testing, this is the case for many on this forum. Most kids arent cookie cutter IBD patients. There is such a huge symptoms list it can be overwhelming.

I hope you get your answer soon and I urge you to get a second opinion from another hospital if you can.
Click to expand...
 
So, I answered some in my larger reply but YES, allergies, reflux, leg pain, eczema, and it is weird you ask about her eyes. She used to tear up for no reason as a toddelr, her eyes would get very red and watery like she was having an allergic reaction and it would go away. It has started back up again! Any ideas??????

Farmwife said:
Hi and welcome!
As JM said my dear Grace was just dx after a year of fighting for answers. :dance:
She like yours tends to constipation. She also has had this since an infant.
The problems with our kids is they don't "fit the mold" in the GI's mind. They too young and IBD doesn't involve constipation. WRONG!

OK some more questions for you.
Does she have anything else? Allergies, reflux, joint pains, eye pains or skin problems?
You said she is flaring. What do you mean? How does she flare?

Also, just to state the fact again. Whether she has IBD (Hope she doesn't) or not. This is NOT normal!!!!! You and her still need answers! Please stay around.

We'll be happy to help anyway we can until you have answers for your little angel!:hug:
Click to expand...
 
OK, you need a second opinion. Take videos. I had to take a video of Grace when she was having knee pains. Take pictures of stool with blood in it.

Have you been doing a journal of her symptoms?
Also a food journal would be great.


Sorry, I'll write more when I have time. We're having a bit a medical drama here with Grace.
 
My daughter was just like that when she was younger (before diagnosis). She would sit on the toilet and rock back and forth and cry. I would rub her back, rub her tummy, put cool cloths on her head. She would be in a sweat, crying, just trying to go. She also has terrible pains in her joints. I also had an older child (3 actually) who dealt with growing pains. But Devynn's pains were different. My dr tried to tell me it was growing pains, but I knew it wasn't. My other kids never had growing pains IN their joints. When Devynn was 5 (just started kindergarten) she woke up one morning and couldn't walk. She couldn't even stand, or put any pressure on her hip. I took her to emerg, and they ran blood work etc. They said she had something called toxic synovitis. They said it was because she either just had, or was going to get a viral infection. That the toxic synovitis was an inflamation from a virus. It COULD recur.. so through the next few years, every time she had joint pain (quite often) it was chalked down to toxic synovitis. But in 2009 she got really sick and ended up in the emerg. They did a whole whack of blood work, ultrasounds, xrays. They came back and told me her white count was through the roof and her lymph nodes in her abdomen were all inflamed and enlarged. She was admitted to hosp and spent 2 weeks on morphine for pain, and ivs because she couldn't keep anything down. They told me she did NOT have toxic synovitis, and that it does not keep recurring. Funny.. same hosp that told me it could recur !?! She was transferred to a childrens hospital and to a GI and thats where the beginning of our diagnosis started.
They did blood work, barium enema xrays, scopes, ultrasounds etc. At first, they told me that kids with IBD don't get constipated, they always have diarrheah. But thats not the case. LOTS of kids have constipation problems.
Devynn also had behaviour problems. She would tantrum, scream and go off the wall. I thought there was something else going on. That maybe she was bi polar or something. But once we got our diagnosis and she was started on meds (Pentasa) within a few days, she was a different child. (She had been to counselling and they said she was a normal, child. But when we would leave, she would turn into this horrible screaming, hitting, biting, child). The GI said that kids who are in so much pain, all of the time can have behaviour issues because they don't even know how to tell you how much pain they are in, or how awful they are feeling because to them its almost normal to feel so bad.
Sorry for rambling. I would try to get a 2nd opinion. Push for tests (blood, ultrasounds, barium swallows, upper and lower scopes, mre) until you get to the bottom of it.
Also, journal everything if you don't already. Everything that goes into her mouth, how often she has a bm, how often she sits on the toilet, the pains, where they are, how bad they are, what do they feel like (burning, stabbing, coming in waves), does she have fever with them, does she break out in a sweat, what you use for pain and how long it takes before she gets relief, any rashes, any skin probs at all, where is the joint pain (which leg etc), how long does it last, her weight, height, any behaviour issues if there are any.. If I can think of more I will add it.
Good luck! (((((hugs)))))
 
Has your Gi or ped suggested pediasure or kids boost?
Sometimes that for a few days helps.
Hot packs for stomach aches but check temp since she is little.
Second the rectal prolapse - DS had that from trying to go.
Did you tell the Gi about the tenemsus ??

https://improvecarenow.org/about/who-we-are

We limit bathroom time to 10 minutes unless DS is actively going.
 
I second the warm pack for tummy aches. My daughter has a rice bag that she uses every night. They are very easy to make if you don't have a heating pad or some kind of warm pack. If you would like info on how to make one, just let me know.
 
The behavior issues are what caused me to stop taking her to daycare! She was very cranky and was waking up from naps screaming and crying and shaking. They said before she woke she would roll around and hold her tummy so I am sure that is what it was! She was also waking up nightly at that time so I think she was also very sleep deprived! Also the joint pain is key! She complains of her KNEES hurting! When my step daughter would have growing pain it was always in her calf or shin, not her knee. Which I think is weird. But we have found that her mood and temper tantrums definitely go along with her stomach pain! Poor baby.

This is going to sound silly, but I tend to not be aggressive enough with the doctors I guess. My 8 year old has had many tests, egd, bronchoscopy, ph probe, sweat tests, holter monitor, even monitor (going on now), neuro psychological tests etc. and every test that comes back without results I feel so guilty for putting him through! Of course I pushed and pushed and it took me pushing to finally get him diagnosed with dyspraxia after 8 years of knowing something was different! But I feel like I am torturing my kids with medical tests sometimes. Does that make sense?

I know I need to push though, she just cannot keep going on with this much pain every day! I guess I WANT the doctor to be right, I want it to be just normal constipation that will go away, but that isn't happening!
I did email the doctor yesterday after she sent me a note saying that all blood work was negative for celiac and thyroid. I explained how much pain my daughter is in and how it is effecting our daily lives. I also asked if we should consider IBD. She hasn't replied yet, so we will see. I just know that I asked about several things like SIBO or fructose malabsorption and was told if she didn't have diahrrea it isn't that, so I know she is very black and white!

Devynnsmom said:
My daughter was just like that when she was younger (before diagnosis). She would sit on the toilet and rock back and forth and cry. I would rub her back, rub her tummy, put cool cloths on her head. She would be in a sweat, crying, just trying to go. She also has terrible pains in her joints. I also had an older child (3 actually) who dealt with growing pains. But Devynn's pains were different. My dr tried to tell me it was growing pains, but I knew it wasn't. My other kids never had growing pains IN their joints. When Devynn was 5 (just started kindergarten) she woke up one morning and couldn't walk. She couldn't even stand, or put any pressure on her hip. I took her to emerg, and they ran blood work etc. They said she had something called toxic synovitis. They said it was because she either just had, or was going to get a viral infection. That the toxic synovitis was an inflamation from a virus. It COULD recur.. so through the next few years, every time she had joint pain (quite often) it was chalked down to toxic synovitis. But in 2009 she got really sick and ended up in the emerg. They did a whole whack of blood work, ultrasounds, xrays. They came back and told me her white count was through the roof and her lymph nodes in her abdomen were all inflamed and enlarged. She was admitted to hosp and spent 2 weeks on morphine for pain, and ivs because she couldn't keep anything down. They told me she did NOT have toxic synovitis, and that it does not keep recurring. Funny.. same hosp that told me it could recur !?! She was transferred to a childrens hospital and to a GI and thats where the beginning of our diagnosis started.
They did blood work, barium enema xrays, scopes, ultrasounds etc. At first, they told me that kids with IBD don't get constipated, they always have diarrheah. But thats not the case. LOTS of kids have constipation problems.
Devynn also had behaviour problems. She would tantrum, scream and go off the wall. I thought there was something else going on. That maybe she was bi polar or something. But once we got our diagnosis and she was started on meds (Pentasa) within a few days, she was a different child. (She had been to counselling and they said she was a normal, child. But when we would leave, she would turn into this horrible screaming, hitting, biting, child). The GI said that kids who are in so much pain, all of the time can have behaviour issues because they don't even know how to tell you how much pain they are in, or how awful they are feeling because to them its almost normal to feel so bad.
Sorry for rambling. I would try to get a 2nd opinion. Push for tests (blood, ultrasounds, barium swallows, upper and lower scopes, mre) until you get to the bottom of it.
Also, journal everything if you don't already. Everything that goes into her mouth, how often she has a bm, how often she sits on the toilet, the pains, where they are, how bad they are, what do they feel like (burning, stabbing, coming in waves), does she have fever with them, does she break out in a sweat, what you use for pain and how long it takes before she gets relief, any rashes, any skin probs at all, where is the joint pain (which leg etc), how long does it last, her weight, height, any behaviour issues if there are any.. If I can think of more I will add it.
Good luck! (((((hugs)))))
Click to expand...
 
Since you dont quite know what your dealing with. Avoid NSAIDS like Motrin, ibuprofen, Advil for it can make matters worse if it is IBD. Stick with Tylenol/acetaminophen for pain/fevers with the doctors consent of course.
 
It just started when her stools went soft. I figured it could be due to her rectum being stretched out from all of the huge stools she passed. I was told that it could take up to 6 months for things to go back to where they were. But we can't go 6 months of this to wait and see.

my little penguin said:
Has your Gi or ped suggested pediasure or kids boost?
Sometimes that for a few days helps.
Hot packs for stomach aches but check temp since she is little.
Second the rectal prolapse - DS had that from trying to go.
Did you tell the Gi about the tenemsus ??

https://improvecarenow.org/about/who-we-are

We limit bathroom time to 10 minutes unless DS is actively going.
Click to expand...
 
I trying to avoid the prolapse what I did was bring a book in the bathroom and keep her taking to me about the pictures in the book and doing her colors and identifying things. Keeping her talking gave me the indicator as to whether she was pushing or not it is hard to for them to push without holding their breath. Or making an obvious grunt. I would just say don't push just let to poop fall out and we limited her toilet time if nothing happened within ten minutes I got her off the toilet and would tell her she can try again if she needs to soon. Also keeping the feet off the floor using a step was a biggie and avoiding allowing her bottom to hang into the toilet. We have a toddler ring that fits on the toilet. I think a lot of the time my kid associated her belly aches to needing to poop and she thought if she could push it out then the belly ache would go away. Not the case for her.
 
Growing pains are NEVER in the joints. I've read this and has been told by the GP.

Yes, each time they came at Grace with a needle I would start to question the need for it all.
As everyone on this forum knows, if I could live in my happy place bubble I would gladly do so.

Ok, back to my thought. Take videos and when you go to the docs make them look at it.

My Grace's knee/leg and or hip pain was so bad my hubby on multiple occasions had to carry her out of a store. She also for years would trip on her left leg. Know we know it was weakness in the leg.

Her eye pain does sound like allergies. Which is common with IBD. My Grace has asthma also. MLP would know more about this because her DS has bad allergies. Grace's eye pain is sharp. However, you should be discussing all this with a GI or GP.
You and her should NOT have to live like this. It is NOT normal! I wish someone had told me this. My GP made me feel like this was just something she has and it will go away in time. It didn't. My Grace was up to 3 cupfuls a day of Miralax and Senakot also.
THAT"S NOT NORMAL AMOUNTS FOR A 3 YR. OLD! My Grace also had a prolapse. You don't want to live through that if you can help it!

Please pm me anytime!:hug: I've been where you are and your not alone.:ghug:
 
Nope, makes total sense! I always felt guilty about putting her through the tests as well and ESP the blood work! Just keep pushing. She is probably acting out because of the pain. I can tell when my daughter isn't feeling well because she gets very short tempered. Not at all like before diagnosis, but she can get snappy and miserable. She would also roll around and hold her tummy even in her sleep. Thats when I started making rice bags. She still uses one every night even if she feels fine. It helps her sleep, its very calming and comforting for her.
I actually went and bought a wheel chair for Devynn because of the joint pain. She got too big to carry or piggy back, but there were times she just couldn't walk around. Also, growing pains are never in the joints from what I've been told since diagnosis.
 
Devynnsmom I have a cherry pit warming sock. Had it for years. LOVE IT!

PM me and let me know how you make yours. Please and thank you!:hug:
 
It is so hard to see your child in pain and not be able to fix it. Jack had daily stomach pains before dx'd and he also associated with food to the point he just quit eating. He would take 2-3 bites and tell me he was full.
He would also wake up in the middle of the night to try and go. That was one of the first things his GI asked as he told us that the intestinal tract "sleeps" at night and you should not be getting up for a BM unless there is something wrong given this could be a virus but then it is usually only a day or so not an ongoing issue and Jack would be up most nights trying to go.
He also had eczema at the time and has pretty much come on everytime he flares
I'm not saying it is IBD only telling you our experience and even though it is hard to put them through all the tests you need to find answers so you can have a plan for them to start feeling better
 
So, I just an email back from the doctor,

Doctors reply:

Hi Julie:
I have several thoughts about this.

The first is that the abdominal pain in the morning and after is likely reflux. Selah hasn't had an upper endoscopy to directly look at the esophagus, stomach and small intestine. At the follow up visit, we will discuss scheduling this.

Secondarily, I would like to do a stool study to check for inflammation in the GI tract. This looks for inflammation from Crohn's or colitis. If this is elevated, then Selah may need a colonoscopy too. I would like this to be completed, so that we have the result for the next clinic visit. Let me know where you want the order sent.

I think the reason she has the sensation that she needs to get more stool out when she goes is related to the constipation. This tells me that what we are doing is not producing enough stool. The pain may also be because her colon is more active as we are trying to manage the constipation. Kids who have had pretty quite colon's don't like the new sensation of it moving in a more normal way.

Please keep a BM diary and the pain diary we discussed for the next few weeks and then return to clinic where we can discuss this and then decide on any additional studies.

Janice
 
I would recommend to the GI if they plan to do an upper endoscopy to do the colonoscopy at the same time to be thorough. No point in knocking her out twice for this. Most of us get them done together. I don't think it would be deemed unreasonable.
 
Well, if her stool studies are normal she will totally rule out crohns, that is what she did with my son. Should I push for a colonoscopy even if the studies are normal?
 
Never had to have a stool study before so I don't really know too much about the validity of the test. I know some have a completely silent disease and never come up as flaring on tests. With that being said imaboveitall is well verse in silent disease progression. She will probably be along shortly.
 
We have never had stool studies either but dd's labs showed inflammation prompting her scopes. With upper and lower GI symptoms I would absolutely push for both scopes at the same time.
 
Many of our children have had the fecal calprotectin done and yes it checks for inflammation markers in the stool, I think others have said it that if the inflammation is up higher like small intestine it will not always show in the test, when I get a moment I will look and see if I can find the info on that. I think there have been several kids whose labs all come back normal yet once a scope or more often a pill cam shows active disease.
Hope you get answers soon, glad you are at least getting quick replies to your questions
 
Grace never tested high on that stool test. Again I also heard the higher up the inflammation is the less likely you will have raised levels.

Also Grace had NORMAL labs. Now you see why it was hard to get them to take me seriously!

Also again, Grace had a clear upper scope. It was the colonoscopy that showed inflammation.

Of course your little one might run different than Grace. I'm just saying if test come back negitive.....
 
I am glad she at least replied to you. Have they done a crp though for some kids that too can be negative. She at least sound like she is willing to talk with you. Definitly keep the journal and like Farmwife said video if you can.
 
:ywow:glad you Gi emailed back ...
Just so you know what happened with my DS
Labs - crp /esr - normal or near normal so no concern age 6 - present
Stool test twice - normal - age 8
Upper Gi / small bowel follow through imaging - normal age 7
He previously had only an upper egd ( scope) at age 6 due to stomach aches
No one took the constipation seriously
Everything was Normal since he had been on oral pred 7 weeks before for 5 days due to anaphylaxis .

Only got an upper egd and lower scope at age 7 due to rectal bleeding .

He had had recurring painful rectal prolapse since Jan 2011 - we didn't scope until sept 2011 since DS had already had a "clean" upper scope before
And no one worried about the constipation or temenusus .

I wish I could say it got easier but even with an Ibd dx most gi's do NOT take constipation into acct - DS has seen three different gi's

Beware of functional gut dx -- code for we don't know what is causing it
But kiddo will out grow etc...

I am not saying your child has Ibd but as others have said that serious of constipation is not normal and your doc needs to help you figure out why.
Hugs
 
Hi there so sorry you had to find this forum. A couple of things about what you posted have struck a cord with me. My daughter Lucy who is 4 now was diagnosed with crohns at 2.5 and what struck me about your post was how like Lucy in so e ways your little o e sounded. The crying with the bm, the small fissures around the bum area your GI could see, the excema and the constipation. You definaty need to have a colonoscopy the fissures and crying would I think necessitate that - the extent and amount of Lucy's fissures were only found during scope. The excema could be an extra intestinal manifestation as was the case with Lucy a nd finally don't be fobbed off with just constipation - this happened with Lucy for a full year. I am not saying your little one has ibd but certainly from what you have posted I think your little one needs to be investigated. While the blood work can be helpful they may not give an accurate picture of what is going o. As some posters have outlined. I wish you the best. Ps am on my phone so spelling is really bad
 

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