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Just got off the phone with the doctor. She said everything is normal. Biopsies are good and the inflammation is what you would see in a patient that has normal diarrhea.

She stated that my daughter is "FUNCTIONAL" what ever the hell that means.

They can't find anything wrong

She wants her to continue on:
Probiotic
Levsin

And wants her to start:
Metamucil

She wants her to also start counseling for anxiety. And the counselor will help her learn ways to deal like deep breathing or yoga. Really?? What 16yr old does Yoga or Deep Breathing? She also said that since we know what foods trigger flare ups to simply stay away from them.

This doctor has frustrated me and I'm moving on to another doctor. I've ordered all of her testing results and information. To take to the next doctor. There is something wrong and I don't believe she is "FUNCTIONAL" She is still missing school and in pain.

:ybatty:
 
I think you really need to check the small intestine. Like others have said, scopes cannot reach a good portion of the small intestine. Possibly an MRE or pill cam might be in order.

Keep pushing, mom. No child should be in pain for extended periods of time. Something IS up and you just need to find someone who will help you.

Good luck!
 
Mehita said:
I think you really need to check the small intestine. Like others have said, scopes cannot reach a good portion of the small intestine. Possibly an MRE or pill cam might be in order.

Keep pushing, mom. No child should be in pain for extended periods of time. Something IS up and you just need to find someone who will help you.

Good luck!
Click to expand...

Thank you Thank you Thank you! I feel like I keep getting knocked down being told, she's normal. It's nice to hear someone else tell me to Keep On It! It's so hard to keep on it when you keep getting told, everything is fine. Thank you for this!
 
By "functional" the doctor may have meant she has a functional disorder. IBS is considered a functional disorder. We had one dr (@John Hopkins) use this term for us. This doctor said that with IBD you would see tissue damage but with functional disorders you will not. They attribute the symptoms for functional disorders to the nervous system (enteric nervous system) ... hence the recommendation for counseling. (We did not follow those orders.) Good luck!
 
Got my hands on her result paperwork. Waiting to see a secondary doctor. A few things I see from the report listed below:

BUN- Low 5
Albumin Level- Low 3.5
C Reactive Protein- High 1.2
White Blood Count- Low 4.0
Immature Granulocytes- High 0.3
Stool Calprotectin- High 165

Endoscopy- Midway to the transverse colon, there are areas of edema & erythema and friability.

Does this look like anything to anyone? LOL LOL I have no clue what these mean but they are the only things highlighted as being different.

Thanks
 
Edema and erthymea mean swollen and red.
Which can happen from Ibd or just plain old prep.
Have you had the biopsies read by another hospital ?
We have sent DS's out to cchmc more than once for a re read .
No visit needed just get a second set of eyes on the path slides or mre etc...
Makes DS 'a Gi and us feel better about med decisions etc.,.
 
my little penguin said:
Edema and erthymea mean swollen and red.
Which can happen from Ibd or just plain old prep.
Have you had the biopsies read by another hospital ?
We have sent DS's out to cchmc more than once for a re read .
No visit needed just get a second set of eyes on the path slides or mre etc...
Makes DS 'a Gi and us feel better about med decisions etc.,.
Click to expand...

How do I get someone else to look at the pathology?
 
Call Bch chop or cchmc etc...Gi Ibd dept and ask for a second opinion.
You tell them you only want a records review of xyz .
We did all records and tests etc the first time.
You then contact the path dept at your current hospital and have the slides released /sent to the second place . Usually needs a medical release form and fill I. The name address etc of second opinOn place .

A few weeks later a report and insurance is billed
 
New to this. Trying to find information. Daughter is 15 type 1 diabetic. Having severe joint issues and just some minor belly issues. Fecal calprotectin was 351 and CRP was 1. The normal range is less than 1.EGD and Colonosopy only showed Chronic esophagitis. Nothing major. They want to repeat these levels in a month. She has had a wt loss of 25lbs since July. She never has diarrhea, she seems to be more constipation. Any ideas what this could be. She has had belly aches for years. She quit complaining because she said they never could find anything and she was worried about our medical bills Her endo was sure it would be Crohn or celiac but the Gastro wouldn't give me any answers to that question until test are repeated in 30 days. In the mean time she is still having so many joint isues. Knees, hips, wrist, fingers and toes and she has this skin sensitivity to touch. For example if you use your finger and write a time it will turn white and stay there for 5-10 min. Looking for any ideas. They started her on Diflucan 40mg for 21days. We are going to Childrens Hospital in Cincinnati. This past Saturday she slept for 16hours. Got up and went back to sleep 2 hours later. Everyday she comes home from school and sleeps for 2-3 hours. Trying to balance her sugars and this have been a huge challenge. Like I said looking for ideas. I just wonder if it is Crohn's.
 
Has she had any testing of the small bowel as a colonoscopy can only reach the start of the small bowel.

Keeping looking for answers, my daughter also stopped complaining about stomach pain as the dr keeping saying gastro.
 
Hi everyone -- long time, no post. :) I am still around just lurking mostly. Gracie is 5.5 now and still a medical mystery. Things never really got "bad enough" to rescope her. Here are the results of her original scope in case you're curious:

Esophagus:
NO DIAGNOSTIC ABNORMALITIES

Stomach Antrum:
MILD CHRONIC GASTRIRIS WITH FOCAL ACTIVITY AND RARE H. PYLORI

Duodenum:
NO DIAGNOSTIC ABNORMALITY

Terminal Ileum:
FOCAL ACUTE INFLAMMATION

Colon, designated as right:
MELANOSIS COLI

Colon, designated as left:
FOCAL CRYPTITIS AND MELANOSIS COLI

This was treated with sulfasalazine twice now, both times with improvements, and both times things eventually got worse again.

So she's worse again now primarily with abdominal pain. Everyday -- every meal. She's been tested for Celiac 3 times, all negative. She's not lactose intol (according to her scope), she's still gaining weight, though she's not gaining a lot of height.

And her attitude is that she's "fragile." Like, she melts down easily, she's tired acting a lot.

I am thinking of starting over again -- asking for a fecal lactoferrin possibly? Last time is was negative. I need to go pick up those results in fact, but that had to have been 6 months ago?
 
You may want to ask for a fecal caloprotectin instead.
It gives a number versus a positive negative .
Much more useful
 
I just remember from last time they said they don't do the cal protection. But it does sound a lot more helpful. Grr.
 
I do think she is probably gluten intol. But, I don't really think that's the whole story. For example, she'll have tummy aches when she wakes up in the morning. She'll have them when gluten-free, she has them in the middle of the night?
 
Is there anything between Celiac and IBD? I'm sure there's a million things. I forgot to mention she has a low grade fever off and on.
 
I have been dealing with my daughter having chronic lower abdominal pain with chronic constipation and now mouth sores (looks like little red blisters on her tongue and inside of cheeks). About two years ago she had the same mouth sores/blisters and then started having severe lower abdominal pain. After being seen at the ER multiple times and being told that she is just constipated and needs to drink more fluids, eat more fiber...We were referred to Pediatric GI specialists, tested for celiac, crohn's, UC, had upper endoscopy, colonoscopy, CT scans, ultrasounds, all appeared normal and through treatment for the constipation, it seemed to be under control after about a year. Then it started all over again about 3 months ago, but this time the pain is worse. It seemed to be more specifically in the LRQ and she underwent all the tests to rule out her appendix, ovaries, obstruction...pretty much everything they thought it could be. I was then told that it was a virus that needed to just "run its course". 3 months later with belly pain and a month and a half with mouth sores and we are still running with the "its just constipation". The last GI we saw Dx'd with Slow Transit Colon IBS. Rx for Amitiza and 17g Miralax daily. Her bowel movements are now like loose oatmeal and she is still is a Level 6/7 pain constantly. She has lost about 10+ lbs in the last month and small blister keep popping up on her tongue making it extremely difficult for her to eat or drink anything. After I called a flipped out about her not improving, they schedule an MRI Entrography which I was told was normal, but showed impaction. The last time my daughter went to the hospital BEFORE starting the medication prescribed she had a complete bowel clean out (x-ray after showed empty bowels). Since then she has been unable to eat much of anything that is not soft and easily just swallowed like applesauce, oatmeal, Boost drinks. Many times I have to force her to finish a single serve pre-packaged applesauce. We supplement with the Boost drinks to help keep her calorie intake up. I asked them how she could be impacted when she is eating so little and her BMs are already so loose? The response was..."I don't know...here's our plan of action, increase Miralax to
24g daily continue Amitiza, follow the enclosed directions for a bowel clean out for 3 days and get an X-Ray afterwards to see if impaction cleared." REALLY!! Increase the Miralax? She is already having very loose BMs, there is no clear diagnosis on the sores in her mouth, which we have seen her pediatrician and been referred to an Infectious Disease specialist (who thinks its GI related not infectious), she is still in extreme pain. I spent the majority of last night with her sleeping curled around me. She would tense, moan/groan/whimper and squeeze me in her sleep. My gut is telling me that I need to push harder, that there is something going on that they are not seeing or finding.

I haven't mentioned that she is a high level competitive gymnast who has been fighting her way back into the gym through all of this. Because of this the doctors are telling me to take her to a psychologist, it is probably stress induced and I needed to "Realize when it was time to stop searching and find someone who could help her DEAL with the pain."

I am at my wits end! Where do I go from here? She is a 12 yr old girl whose life is completely disrupted and she is in constant pain and feels like the doctors are giving up on her and taking the easy way out. She thinks they think she is crazy or mental. Before this all happened she was happier than she had been in a long time...the gym was going great, she started a new school and was making more friends than she has in previous years. Even she has said how great things were until it all started again. Any advice would be welcome.
 
I'm so sorry to hear of all your daughter is going through. The weight loss would concern me as well and I would still be insistent on pushing for answers.

I know there are children's hospitals that are well known for their pediatric GI centers. I think Cincinnati Children's Hospital Medical Center, Boston's Children Hospital and the Children's Hospital of Philadelphia are supposed to be the best. I know there are some parents that have sent for record reviews at other hospitals and still others that went for their second opinion at these places.

I do hope you are able to find some relief and answers soon for your daughter.
 
Also try rhuemo for possible bechets.
mouth sores and go issues that disappear and reappear can be behcets.

http://behcets.org.uk

fwiw my son has constipation as part of his crohn's and when he is flaring we need to increase the miralax does to 1 and 1/2 cap fuels as well. when he is good 1/2 a capful.
if there is impaction then loose still can "leak" around the older hard stool so it is possible
which is why the X-ray would be needed.
DS became completely FOS(full of stool) in less than a week before so it can happen.

have you tried a semi elemental formula such as peptide or peptamen jr ?
might help a little more than boost since its easier on the digestive tract.

also keep in mind formula can be very very constipating for some kids or have the opposite effect for other kids it depends so that may be playing a factor in the vicious cycle.

kiddo is constipated- eats less- drinks more formula so more constipated
give more miralax which causes more cramping so kiddo eats less so give more formula

see the cycle
we have btdt many times with DS.
 
Hi Jleades and welcome. Sorry your daughter is suffering so much. My son was about your daughters age when he started to feel very ill. We had a doctor question if 'school phobia' was causing his symptoms. (I knew it was not.) We went to a psychiatrist for his opinion and got a letter saying that he did not believe there was ay psychiatric cause for the illness. I hope you can get answers. Have your tried getting another GI opinion? Have you tried any other diets or have you done allergy testing? My older son is fructose intolerant (so no apples for him) as well as lactose intolerant.
 
Hi There, I am new to this group, I have crohns myself and have a family history of it, my mum my nan and my granddad had colits.. Anway I have a 9 month old son who has recurrent constipation and has been waking up screaming in pain at night and is very windy. So I am worried this is the start of crohns..(he had blood on 2 occasions a few months ago too)

I was wondering if anyone could share their experiences and what symptoms I should look out for?
xx
 
Hi Holly and Charlie - I really do not know what to look our for in an infant. I am sorry your baby is in pain. I hope you get some support here ... you may want to start a new thread in the Parents of Kids with IBD. Sometimes postings can get 'lost' in the Undiagnosed Kids thread. Good luck!
 
Sickboy11 said:
So after seeing the GI dr again and he is unsure what is happening as my son as he putting on weight but has flares of diarrhea up to 7 times in a day. He is suspecting irritable bowel but is concerned of the b12 deficiency and even after injections it is not stabilising and goes back down. He said to try Metamucil and see if that helps with bulking the stool and hope won't cause constipation. He also said he might rescope him in September when we see him again. He can't do the capsule camera as in Australia he needs to be anaemic to qualify.
So we are stuck again and not knowing what is wrong. How can a child keep surviving doing this many diarrheas in one day and become dehydrated. My heart goes out to any kid that has to live with this lifestyle.
Does intermittent diarrhea like every 3 days once or twice and then three or four days of worse diarrhea sound familiar or could it be irritable bowel?
Click to expand...







Ok so we are still dealing with diarrhea prob now up to five times a day on good days and some days with none.


Dairy soy free and have done fodmap with no success.

I rang the GI and with it now going on nearly two years he has suggested we do capsule endoscopy although we will have to pay for it. Maybe proctitis hasn't cleared up.

Has anyone had the capsule endoscopy at randwick and was is done privately through prince of wales or at the children's hospital? If privately did your health fund cover it ?
No child should have to deal with this- over 40 days off this year from school.

Thanks :)
 
Hi Sickboy11,

I’m so sorry to hear things are still unresolved for your lad. :(

I haven’t really dealt with POWH but normally if a service is offered at a public hospital it is covered by medicare.

I know upsetmom has been there but not sure if her daughter has had a pill cam.

Are you on fb? If so there is a group that is for Parents of Aussie Kids with IBD. Most members are from the east coast and NSW and I know there are members there that have children that go to Sydney Children’s Hospital…

https://www.facebook.com/groups/Parentsofaussieibdkids/

Dusty. xxx
 
Thanks Dustykat,

He is actually getting it done tomorrow in the dr rooms. The receptionist made a mistake and booked him in to POW by mistake to have an endoscopy. So now it is on tomorrow. I will let you all know if they find anything. I don't think they will but as a mum I have to do everything in my power to rule out anything serious since there was proctitis and evidence of inflammation of the colon. It is $2000 without any rebate. His allergy specialist also took a lot of blood earlier in the week with some really interesting names and some genetic ones as well, just to rule out everything.

Going to be a long day with lots of travelling but it only needs to be done once and there are a lot sicker kids than him, but missing out on so much school needs to stop if we can.

thanks again :)
 
Good luck!

I hope the day goes well for you all and you soon find solid answers as to what is ailing your son. :hug:

Dusty. xxx
 
Hi everyone,

I'm a member of this forum and am a 28 year old struggling to get my crohns under control. However, I'm posting about my nephew who is 4 years old and cannot seem to get any sort of diagnosis. He is consistently having stomach pain and very loose diaherrea. This started in earlSeptember. At that time he was also having a fever regularly. After all kinds of testing, his blood tests showed inflammation consistent with crohns. Then when they gave him the colonoscopy and endoscopy it looked fine.....

All his symptoms have persisted though and his blood tests are still elevated. Could it be crohns without the ulcerations? Or am I paranoid because of my disease? I just hate that he's in pain and that no one knows whats wrong.....
 
Hi michelle,
So sorry to hear about your nephew. Poor little guy.
Here's a few questions.
Did they take biopsies'?
Did he have any kind of stool test? What were the names?
What possibilities have been thrown out there?

My Grace is 4 also. I've learn that sometimes the disease at the very beginning of on-set can be hard to diagnose. As time goes by the symptoms or "proof" comes forward. The important thing is to make sure he has a GI that is still looking and helping to get to the bottom of things.

HUGS
 
Hugs
My son has crohn's and dud not have signs of ulceration a on his first scope two years ago.
He did have granulomas and other inflammation on his biopsy slides .
Has he seen a Rheumo ?
They might be able to help if its not Gi causing the main issue
 
jleades said:
I have been dealing with my daughter having chronic lower abdominal pain with chronic constipation and now mouth sores (looks like little red blisters on her tongue and inside of cheeks). About two years ago she had the same mouth sores/blisters and then started having severe lower abdominal pain. After being seen at the ER multiple times and being told that she is just constipated and needs to drink more fluids, eat more fiber...We were referred to Pediatric GI specialists, tested for celiac, crohn's, UC, had upper endoscopy, colonoscopy, CT scans, ultrasounds, all appeared normal and through treatment for the constipation, it seemed to be under control after about a year. Then it started all over again about 3 months ago, but this time the pain is worse. It seemed to be more specifically in the LRQ and she underwent all the tests to rule out her appendix, ovaries, obstruction...pretty much everything they thought it could be. I was then told that it was a virus that needed to just "run its course". 3 months later with belly pain and a month and a half with mouth sores and we are still running with the "its just constipation". The last GI we saw Dx'd with Slow Transit Colon IBS. Rx for Amitiza and 17g Miralax daily. Her bowel movements are now like loose oatmeal and she is still is a Level 6/7 pain constantly. She has lost about 10+ lbs in the last month and small blister keep popping up on her tongue making it extremely difficult for her to eat or drink anything. After I called a flipped out about her not improving, they schedule an MRI Entrography which I was told was normal, but showed impaction. The last time my daughter went to the hospital BEFORE starting the medication prescribed she had a complete bowel clean out (x-ray after showed empty bowels). Since then she has been unable to eat much of anything that is not soft and easily just swallowed like applesauce, oatmeal, Boost drinks. Many times I have to force her to finish a single serve pre-packaged applesauce. We supplement with the Boost drinks to help keep her calorie intake up. I asked them how she could be impacted when she is eating so little and her BMs are already so loose? The response was..."I don't know...here's our plan of action, increase Miralax to
24g daily continue Amitiza, follow the enclosed directions for a bowel clean out for 3 days and get an X-Ray afterwards to see if impaction cleared." REALLY!! Increase the Miralax? She is already having very loose BMs, there is no clear diagnosis on the sores in her mouth, which we have seen her pediatrician and been referred to an Infectious Disease specialist (who thinks its GI related not infectious), she is still in extreme pain. I spent the majority of last night with her sleeping curled around me. She would tense, moan/groan/whimper and squeeze me in her sleep. My gut is telling me that I need to push harder, that there is something going on that they are not seeing or finding.

I haven't mentioned that she is a high level competitive gymnast who has been fighting her way back into the gym through all of this. Because of this the doctors are telling me to take her to a psychologist, it is probably stress induced and I needed to "Realize when it was time to stop searching and find someone who could help her DEAL with the pain."

I am at my wits end! Where do I go from here? She is a 12 yr old girl whose life is completely disrupted and she is in constant pain and feels like the doctors are giving up on her and taking the easy way out. She thinks they think she is crazy or mental. Before this all happened she was happier than she had been in a long time...the gym was going great, she started a new school and was making more friends than she has in previous years. Even she has said how great things were until it all started again. Any advice would be welcome.
Click to expand...

Has a Sitzmarker study or a motility study been done? If she was dx with with a motility issue than what could be happening is that she is forming some hard stools that are not moving through her system and causing back up but the miralax is allowing some very soft stool to pass around the hard stools. She may need to reduce the Miralax and use a laxative. Notice I said reduce the Miralax not stop it. The laxative would increase gut muscle contractions thereby helping to push the firmer stool along the bowel tract. Is the loose stool very acidic and causeing her a sore bum?

When a motility study is done with the wires inside the gut, the docs can try various meds to see which ones work on the specific areas of the gut that are not functioning correctly.
 
Thank you Farmwife and Penguin for your replies.

I guess in his endoscopy/colonoscopy everything looked fine, I don't think they took biopsies. His blood tests still show inflammation and he is still having diarrhea and stomach aches every day. I'm not sure if he has had stool tests. He saw a Rheumatologist who said that he didn't seem to have arthritis or anything like that. The GI doctors were almost 100% sure it was Crohn's until they did the colonoscopy and everything looked fine. That being said it's been almost 4 months of these symptoms and nothing is getting better.

Today they did a pill cam, so I guess they are thinking it's possible that he has Crohn's in the small bowel that they couldn't see in the endoscopy or colonoscopy. It's really tough to see a 4 year old going through all of this. On the one hand I hope he doesn't have Crohn's because I know how awful it is, but it's almost worse not knowing what's wrong. Anything suggestions as to what other tests should be happening? How were your kids diagnosed?
 
DS's first scope looked absolutely normal- so much so we were told he had a food intolerance or something else ...a week later biopsy results back and dx of crohn's.
 
michelle222 said:
I guess in his endoscopy/colonoscopy everything looked fine, I don't think they took biopsies. His blood tests still show inflammation and he is still having diarrhea and stomach aches every day. I'm not sure if he has had stool tests.
Click to expand...

Have you asked the doc if he took biopsies? Doesn't make sense not to but I do know some GI surgeons will only take them if they see something with the scope. My surgeon wasn't origally going to take biopsies but I pushed him on it. When I got to the hospital for the colonoscopy, the doc examined me and then added on the endoscopy. He did biopsies of both procedures but only saw something in the colon.

You can have inflamation in the GI tract but not necessarily see it with the scope. It's microscopic inflamation that can only be seen using a microscope. My son's GI inflamation was picked up using biopsies when he was little.

Do you get copies of all reports?

You probably already do this, but thought I'd mention it anyway, make a list of questions, symptoms etc before you go into the doc's office. I make a copy for my doc and one for me so we can go right down the list. It also helps the doc when they write their notes. They can get more details down.

I have several ongoing documents that I update after procedures, surgeries etc. and the results. I have a list of meds, allergies, doctors & pharmacy names, phone number and fax numbers.

Hope this helps some.

I hope things get better soon.

Blessings,
Naturelover
 
Does anyone have experience of Metronidazole?
Freddy has had a two week course of MNZ followed by eight weeks of special probiotic from the hospital. He went from explosive diarrhoea and pain before we started MNZ to totally NORMAL poo for a whole two weeks (first time ever in his little life!!)while he was taking the MNZ, but now we have stopped the MNZ and started the probiotic his stools are gradually becoming looser again. Just not sure if it is significant or not - ie important enough to call and tell the GI or just carry on and see what happens - he is no worse than he was before he started the MNZ, next GI app not due till June.
And any advice regarding accidents (I thought things would improve when his poo improved but it didn't sadly) and how to help him realise better when he needs to go etc are greatly appreciated - I am at the end of my tether with this side of things!
Thank you in advance!
 
Matt was on Metronidazole (Flagyl) for 6 months.

It is one of the two antibiotics used when someone presents with a flare as it has both antibiotic and anti-inflammatory qualities. The theory for the use of antibiotics is, when the bowel becomes inflamed with IBD it loses it protective barrier, so to speak, so the wall becomes breached. Breach the wall and infection sets in.

When you think about the GI tract it is the one of the main areas of the body that isn’t sterile. We put non sterile food into our mouths and down the GI tract it travels. What protects our otherwise ‘sterile’ body from it? the lining of the bowel, mucous membrane. The problem with inflammation is it causes swelling and lesions to form which in turn breaks the mucous membrane which then allows the bacteria from the gut to get deeper into the bowel wall and set up an infective process. That is why most doctors will work under the assumption that a flare not only equals inflammation but infection too.

I think it would be worth contacting the GI and letting him know the positive outcome Freddy had whilst taking the Metronidazole. Who knows, it may just help put a piece in the puzzle. :)

Not sure about the accidents. If urgency is the problem I don’t know how you will overcome that but do you have access to a continence nurse? I would imagine they could be a very useful resource for you.

Good luck Suzy! :ghug:

Dusty. xxx
 
Thanks so much dusty, that all makes sense and is very helpful.
No one has mentioned a continence nurse so maybe we don't have one although he can have the odd day without an accident so I am hoping its just a case of time and helping him understand when he needs to go.
 
Flagyl also helped my son tremendously!!! When he was admitted, he was started on IV flagyl for one week. During that week, with nexium (antacid being the only other med), his CRP went from 140 to 3.6! I believe that long term use is not common as it has it's side effects as well but... :ybatty: When S's GI wanted to start remicade because of inflammation shown in MRI, I did ask if we couldn't do a round of flagyl to reduce inflammation first before starting remicade (as there is a risk that remi can promote scarring) but the GI said no. He didn't really give a reason (or, at least, not one I remember)???
 
There would continence nurses/advisors in your area health service. I dare say the majority would deal with the adult population but there would very likely be paediatric ones attached to children’s hospitals.

Continence clinics

In the UK, there are over 360 NHS continence clinics, with specialist teams providing support and medical advice for people with bowel or bladder incontinence. "If you prefer not to see your GP, these are an excellent alternative first stop for diagnosis and treatment," says Logan. "We can significantly improve life for 75-80% of the people who come to us with incontinence problems.”

Continence clinics can be based in a hospital or in the community, often attached to a health centre. You don’t need to be referred by your GP and you can phone them directly to make an appointment. On your first visit, a continence adviser, usually a nurse who specialises in bowel and bladder problems, will assess you and explain your incontinence treatment options.

Continence advisers, and the incontinence physiotherapists who work alongside them, are particularly good at teaching pelvic floor exercises to women with stress incontinence (sudden leaks) and bladder training to women with urge incontinence (regular urges to use the toilet). They can also issue pelvic-floor-strengthening devices, such as vaginal cones, and continence pads and products, as well as explaining how to use them.

To find details of your local NHS continence clinic:
Call the Bladder and Bowel Foundation (B&BF) confidential helpline on 0845 345 0165, or use the continence clinic directory on the B&BF website (you have to register to use this online facility).
Call your local hospital for details of your nearest clinic.

http://www.nhs.uk/Livewell/incontinence/Pages/Gettinghelp.aspx
Click to expand...

Again, I would think these clinics are likely targeting the adult population but I would ring and have them give you contact details for a paediatric service. These sort of resources can be invaluable and since it what these nurses deal with day in and day out they will have advice and tips for you.

Dusty. xxx
 
Thanks again! That really is so helpful - I honestly had no idea we had clinics like that!

I did call the gastro nurse today as Freddy's pre-school said he was in a lot of pain and had diarrhoea again, then at home he was crying because his bottom hurt and then he had an accident. The nurse was really lovely and said she didn't think Freddy should wait till June for his next appointment, and that she would email the consultant to see if Freddy would need a Dr or a nurse appointment, if I speak to her again I will ask about the continence clinics - and if not I will call them directly.

Thanks so much xx
 
Hi, I am a mom to 9yr old boy who started off having low back pain last October and also had canker sores in his mouth that entire month. We figured the back pain was due to hockey, however the back pain soon spread down his legs into his thighs, knees, ankles and then was accompanied by fevers between 99.6 and 102.1 pretty much every night since the beginning of November. He has drenching nights sweats, loss of appetite and really bad back and stomach pain. He had an episode of bloody diarrhea four years ago that lasted approx 10 days and has never had issues since. He would get constipated a couple of times a year but it would go away. He has lost 9 lbs off his tiny little frame and is so very pale. He is scheduled for an endoscopy/colonoscopy tomorrow. i'm a bit worried though as he had a dose of pico salax this am followed by another dose at 4 pm and no bowel movement at all. he threw up bile after his second dose as he dolesn't have much of an appetite and had not eaten anything since yesterday afternoon-and only liquids todayI'm worried they may reschedule his scopes. The dr.'s have donee MRI/MRI-E/ultrasound/ekg/barium xray,and he has increasing CRP/ESR markers, a cluster of nodules where the jejunum meets the ileum, slightly swollen lymph nodes in his stomach. Anyone out there with similar symtoms?
 
Treaty welcome to the forum. Sorry you had to find your way here.
Your poor kid. I'm glad they there going to scope him. Definitely not right what this boy is going through. Please keep us updated.
 
Aiden's scopes went well and his GI has pretty much diagnosed him with CD -just waiting for confirmation from pathology which will take 1-2 weeks...I am just so relieved that we're moving towards a diagnosis and can focus on getting him better. I am so thankful to have found this site as well. Everyone seems so compassionate and it's just so nice to be able to get advice and share info. Thanks for being here and your responses.
 
Oh treay sorry you are joining the club but as you say at least you have an answer and can start working on getting your little guy feeling better. I remember that feeling after scopes when GI says 99% Crohn's but we just need biopsies to confirm and thinking okay now lets get the treatment going. I was unfortunately lucky in that my hubby has crohn's so I had an idea of what we were dealing with.
Have they started him on any treatment? We went home from scopes with an rx for prednisone and started on Imuran when biopsies confirmed Crohn's
 
No-they haven't started him on anything which is a little frustrating as he still has fevers/nights sweats/pain and now I also keep thinking of the pictures we were shown today of the ulcers along his intestines which makes it even harder to wait for treatment as I now see what's causing his pain and so badly want to fix it-but I can understand that they need to confirm the diagnosis. She mentioned nutritional therapy as an alternative to steroid treatment but is leaving the decision up to us once we've been informed of the pros and cons of each. I was able to find some info on the enteral therapy on this site as well as other diet info and possible trigger foods so I can at least start with that. Again-this is an amazingly supportive site and so thankful to have come across it.
 
Wish we would have been given the opportunity for EN at diagnosis. We have done it in the past year as Jack absolutely refused to go on prednisone again. He could not stand the side effects. You obviously have to decide what works for you and your boy but you are right that there is a lot of information on here and plenty to answer questions. Keep us updated I would suggest you keep copies of everything.
:ghug: Lots of hugs as you start on this journey.
 
Thanks-I am already leaning towards EN as I've heard about the possible side effects of the medications on the kids... but I'm also wanting to see improvement sooner than later with Aiden's symptoms. Did you find the EN had the same results as the meds? and if so, how long was it until you noticed the symptoms were improving on EN? Thank you again for your replies :smile:
 
We actually noticed a decrease in symptoms in just a few days the pain went away, maybe because the intestines didn't have much work to do. One thing to consider if you are leaning towards EN anyway is there have been a couple on here who have tried EN at first and it wasn't enough and they needed to add pred in but I think they would say that were glad that they tried it. So I guess I'm saying I personally would try the EN you should hopefully know pretty quickly if it is helping as you should see a decrease in symptoms. Never an easy decision. Pred is the med we all have a love/hate relationship with. It works quickly but the side effects are not fun
 
Hi treay, sorry your boy is going through so much, hopefully the scopes will get some answers and he can get some meds that will help him feel better, wishing you guys lots of luck and sending lots of hugs.
 
We tried EEN at first with 6-mp rather than pred plus 6-mp.
His sed rate went down but he still had symptoms after 9 weeks of EEN we add pred.
Sorry you have to join the group
 
My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers fromchronicconstipationtoo hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half a colonoscopy (no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes really tired and doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.he has also had pain in arms and legs for over 2 year

Can anyone shed some light please
I have posted this same post in a few places for ideas
please help x
 
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Hi I'm new here looking for advice for my daughter. She is 16 is Type 1 Diabetic and became ill almost 5 years ago and was diagnosed with chronic fatigue syndrome/ME. She has had tummy problems for years but things have got a lot worse in last 3 years. She had an endoscopy a year past December and they found severe chronic gastritis - she had a calprotectin level of 133. They didn't do endscopy as felt no need. Things have been worse with nausea, vomiting, constipation etc. Been hitting my head over a brick wall and her gastro was off ill and no one else would look at what was going on - they blamed her CFS. Anyway gastro is back I got her seen urgent and they re did some tests. Her ESR is slightly raised, her albumin a bit lower, she is totally iron deficient now and her calprotectin level is now 400. The are doing a endoscopy and colonoscopy on the 27/28 of this month but am panicking as everything I read about calprotectin is to do with IBD. They don't think its coeliac as her blood test came back negative again. She has been so ill for the last five years and feel like no one has been listening to us. She has had so much tummy pain etc but because she doesn't complain it was put down to IBS. Any advice ?
 
Welcome Cat26,
I'm glad they are doing further testing and hope you get answers quickly. The raised ESR, FC and anemia can certainly point to IBD but colonoscopies along with biopsies taken during the procedure should hopefully give you a definite answer. Scopes will not be able to see small intestine however so if scopes do not give you an answer I would request an MRE or a pill cam. Good news is if she does have IBD you can get her on a treatment plan that will hopefully have her improving quickly and symptoms gone. Fingers crossed for you on the scopes. Please keep us posted.
 
Welcome cat. I am glad you have some tests scheduled ... surely hope they can figure something out so they can treat your daughter.
 
Thanks for the replies. Feel so unsure at the moment. She has had a terrible couple of weeks, feels sick eating, becomes bloated and reflux been terrible. So much pain and so pale. The iron tablets are helping as she is not short of breath any more (iron was really low). Hate this waiting game for the tests. They have said they might have a cancellation this week so she could get in Thurs/Fri for tests if not its next week as organised. So scared for her so has put up with so much over the years and I know she is worried herself I am just trying to stay positive. Just need some answers this time. I get so angry at times as she has gone downhill this last year with tummy and her endoscopy was meant to have been repeated before xmas but her Gastro was off long term sick and no one else would deal with her. We got passed over each time I phoned and eventually saw a locum who said she only had "functional dyspepsia" even though he didn't have her notes etc. Refused any tests at all. Feels like everything has been a fight!
 
Hello. I am new here and looking for some advice/ opinions.

My foster daughter is now 20 years old and has been suffering with recurrent nausea and vomitting for years (she thinks since grade 9). These episodes occur every month or two with no particular pattern, sometimes triggered by an event (happy or stressful). The vomitting is frequent- a few times per hour- for 6- 12 hours, then she is unable to eat or drink much for the next few days until the episode passes. Oral gravol is not tolerated, sometimes suppository gravol helps.
The last few months, she has had a couple of bouts of "canker sores" in her mouth and on her outer genitalia. She has been tested for every STD they can think of, and all are negative.
This most recent "flare-up?" started with nausea, then diarrhea with blood in her stools, then vomitting with abdominal pain, especially in the RLQ.
Seen in Emerg, bloodwork and pelvic exam done, and referred for ultrasound and to a Gastroenterologist.
The next day she had another bout of the canker-like sores in her mouth and on her vulva. The ones "down below" are apparently very painful. She has an appt with her GP today to get these checked again.
She has lost 8 lbs in 4 days. She normally has a very good appetite and is unable to keep anything down.
Has a history of an appendectomy- Emerg Dr mentioned the other day that the surgical note said the the appendix was normal when they removed it. (had looked bad on CT scan) Also had a bowel obstruction during that same hospitalization which resolved with meds.
She has been tested for H Pylori which was negative. GP is planning to have her tested for allergies.

Does this sound like Crohn's? or something else? What other tests/ specialists should we be requesting? Any advice is appeciated.
Thank you.
 
My daughter had her endoscopy and colonoscopy on Friday but apart from some gastritis still lingering they couldn't see anything else. Have taken biopsies which will take around 3 weeks to come back. They are going to book her in for an MRI of the small bowel and then a capsule endoscopy to rule out any problems in the small bowel. They checked her ESR level and it is still slightly raised and her calprotectin level is still 400. The gastritis is less than when the diagnosed her with it over a year again when they said it was severe chronic gastritis but at that time her calprotectin level was only 133. So here I am sitting puzzling if there was nothing much to see why is her ESR raised and why does she have a calprotectin level of 400! She was in so much pain after procedures she had to stay an extra night as she was so sick and tummy burning and in pain. Just wanted some answers and still don't have any :(
 
There are a couple of children on here diagnosed with biopsies. Scope looks clean but biopsies come back with microscopic inflammation. Glad they are following up with more tests to rule out other areas. Hope it all gets done quickly and gives you some answers and your daughter feeling better.
We've never done the pill cam as the MRE gave us the answer that there was inflammation in the small intestine. My son's Calprotectin level at that time was 395.
 
I have severe chronic gastritis it usually doesn't cause an increase in calprotectin.

My daughter has Crohn's. Good luck with the further testing.
 
Thank you so much for replying I thought I was going out of my mind and imagining things that weren't there. They were so off hand about results as if we had wasted their time but then my husband said to me why are they doing other tests if they think everything was "fine". I also don't get if everything looks fine why her ESR is raised, she became totally iron deficient (now back up thanks to a months course of iron), her albumin was low, and her calprotectin is 400. No explanation as to why this could be just that every looked "pretty normal". Coeliac blood test before scope was normal also. She has been in so much pain since coming back from theatre. Other kids had endoscopy etc and they were ok. Katie's tummy was burning and twisting/stabbing and she was so sick. Looked dreadful. We have had such a long journey with her diabetes, then chronic fatigue and now all these problems with her tummy. She has lost 5 years of her teenage life due to all her health problems. Can only attend school part time and is wiped out even talking to someone! Catherine thank you for letting me know you don't have an increase in calprotectin with gastritis. They blamed the increase on gastritis last time and wouldn't do a colonoscopy. Fed up with waiting for answers. Still waiting on results of a MRI she had on her knee 2 weeks ago and full connective tissue bloods still to come back. As Katie says all she wants is to know what is wrong then she can deal with it. This waiting and not knowing and them blaming everything on her chronic fatigue is driving us up the wall. They ignored all her vomiting for almost a year and blamed her chronic fatigue and then were really surprised to find severe chronic gastritis and said oh my she must have been in a lot of pain!!!!!!! Do I sound slightly frustrated lol ! She has coped with her T1 Diabetes for 10 years and as she says just tell me what I am dealing with and I will get on with it. :(
 
My daughter has had 5 scopes and after the 4th she was miserable. Pretty much the same burning/stabbing you describe. It ended up being terrible gas which is pretty common after scopes. The more I got her to move (which wasn't easy since she felt awful), the more gas she passed and the better she felt.
 
The other thing that slightly worried me was how long the bowel prep took to work. She had sennakot at 6pm then her first dose of piccolax at 10pm. She didn't "go" until 1.40am on and off all night. They gave her her second dose at 10am and by 12.50pm she still hadn't been so they had to quickly give her an enema because she was going to theatre at 1.30pm. I have had to take piccolax before and it worked really quickly so don't understand why it took so long with Katie?
 
This looks like the right place to post things.
I have two teens, an 18yo girl & a 16yo boy. This is about my 16yo. He has been sick for almost two months. Having R side abdominal pain (w/ R side shoulder pain), mild nausea, loss of appetite, weight loss, fatigue, chest pain, weakness, joint pain, and muscle aches. No vomiting, no diarrhea. He is eating a bit each day but it causes pain. He is having some trouble with food sticking in his throat as well. I have watched him go from a busy, active, fun loving 16yo to a pale, thin, tired kid. He has had an ultrasound (normal), a HIDA scan (gall bladder is normal), bloodwork (normal), and an MRI (normal but showed signs of mild starvation). He will be having an endoscopy (on Monday 4/14) and the doctor will be putting in an NG tube as well. He will have this in for several days to a week. Doctor is still looking at the possibility of Crohn's. Right now the Dx is Visceral Hypersensitivity with possible IBS.

DS will be staying overnight at the hospital and coming home with the NG tube. I am hoping to get some info on what to expect. How to make him comfy. Do I need to get anything special for him? I know a home health care person will be coming to get things set up. Are there things I should ask that he/she may not share? Any tips from those that have children with an NG tube. I realize that this is a short time that DS will have this in but I am feeling rather nervous and helpless. Thank you!
 
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Welcom MrsMommy,
Hope the scopes went well yesterday and you will be heading home soon. Please check out this thread as it deals with EEN http://www.crohnsforum.com/showthread.php?p=694576#post694576. My son did not have the NG tube but drank the formula but there are lots of kids who have had the NG tube. Clash's son has one now and is just a few weeks into it so lots of information in the thread on her son and tesscorms son was on it for a long time. They both put the tube in and take it out every night. You can also start a new thread for any specific question you have about the NG as well.
 
Hi MrsMommy, my son was 16 when diagnosed with crohns. He did use enteral nutrition (formula feeds) through an NG tube and found it relatively easy to do. He was taught how to insert the tube while at the hospital (a nurse inserted in the first time and then talked him through it the next couple of times) and then he came home. He inserted the tube each evening and removed it in the morning. While we may have been nervous about it the first few evenings, he really didn't have much trouble with it. He did find the sensation of the tube in his throat to be a bit annoyng (not painful) but became accustomed to it fairly quickly. He also found the noise of the pump annoying but, it is a rhythmic sound and, again, he became accustomed to it. Although, to help alleviate that problem, I did put the 'pump' into his nightstand drawer and drape a towel over it.

Make sure they use a small tube. My son used the formula feeds for two years and was up to 165 lbs, 5'10" and used a 6Fr sized tube (infant size). It was easy to insert and did the job! It seems to happen fairly often that kids have a tough time with the insertion of the tubes but the hospital has used a larger tube! :(

Good luck with finding a solid diagnosis and with the tube! :ghug:
 
Hi, I've been here before....
If anyone can see my own thread they will get a bit of background info. .
Can I ask a quick question
lo is undiagnosed and hoping to get a diagnosis soon.
his stool looks like theres 'fibres' in them? Like hes been eating weetabix of something. Rather grainy andvery watery im gguessing its overflow as he suffers from chronicconstipation.
Any ideas? Thank you
 
Grace suffers from constipation also. She's had watery stool come out because of overflow of impacted stool.

Is the fibrous like stool coming out pencil thin? Is there a lot of it? Is there an odour that's nastier then usual?

Have you called the GI to update?
 
Nope. Hes had endoscopies done which at first showed inflammation so started neocate advance and cmp free diet. Inflammation settled and eats what he wants (I wish it was enough but he eats very little)
He had a colonoscopy done without bowel prep which obviously wasnt a true study as he had no clear outand a full one wasnt done so he said what he could see was ok which imo is pretty wrong as he should have said we can do another with bowel prep to see. He gets blood specs in his poo, pain at peg site, anaemia, chronic constipation, tummy ache, hes bad ulcers in his mouth, gets very sore bum with overflow, pains in his arms, orange blood? Out of peg aspiration, he also has reflux and has had meningitis septicaemia and is borderline autistic.
Phew. Im sure ive missed something
 
It was from aspiration from peg, he was admitted to hosp for it and dr said it was 'orange blood' and kept him nil by mouth for emergency scope but never did it
 
Just wanted to draw attention to this thread here. There's a new member of the forum with a 13-year-old who is struggling to find a diagnosis and needs help.

I'm going to move the thread later to Undiagnosed/Parents of kids with IBD, but for now wanted to leave it in General IBD in the hopes more people would see it. If anyone could help out and respond in-thread, that would be lovely!
 
He had a good meal last night some chicken, chocolate cake and grapes. He woke up with tummy ache and was sick. No food, coffee ground blood and lots of mucus.
He has on many occasions been sick with food thats come out undigested 10-15 hours later.
 
Hey have date through for my daughter Katie's MRI of small bowel which is the 6th June. We had gastro appointment on Thursday for results of biopsies which didn't reveal much. She said there were some ? cells on them (said it can occur in some people forgot the name) but apart from that nothing much to see. Still has patches of gastritis also. Rheumatology have arranged for her to go into hospital for a week on the 19th May for intensive physio (has chronic fatigue/ME) and more tests from them and gastro. Gastro going to try and bring MRI forward from June (hopefully) so she can have it done whilst in hospital. Also going to repeat calprotectin and bloods. She said if MRI is ok then going to do capsule endoscopy and because she needs another bowel prep for that she will repeat colonoscopy also. She said calprotectin levels were 405, ESR levels have been 24, 19 and 38 and her ferritin and iron stores were low. She has put her back on iron tablets again as was beginning to have same symptoms as before when it was low. They are obviously still looking hard and so frustrating because something is going on but they don't know what. She has become so constipated over the last few months. Takes 2 laxido sachets and also lactulose and still doesn't go for 4 days at a time. Has been having more pain on right side and Gastro said that was the area she was unable to reach. Can you have constipation with Crohn's - I always thought your bowels were loose. She also freaked me by saying perhaps Rheum were looking at a sort of vasculitis issue. Anyone's kids had an MRI and how did it go? She is to drink a liquid made up of 50ml of lactulose and water and worried how it will affect her as she is also Type 1 Diabetic and we need to remove the pump whilst in MRI which they have said will be approx. 45/50 mins. Any advice greatly appreciated. x
 
My son has CD with location starting at the ileocecal valve and upward in the terminal ileum, since this is small bowel he doesn't tend toward diarrhea but more toward constipation. Not everyone with CD experiences D, some experience C and others deal with both.

As far as MRI my son had one with contrast. It lasted about an hour and he had to lay very still. He has also had an MRE(magnetic resonance enterography) which was great at visualizing the bowels and is no radiation. He recently had a CT scan as well.

I hope you are able to find some answers son Cat26!
 
My daughter was dx at 16 with Crohn's. She has no bowel symptoms. Although she has had two X-ray which show whole large bowel full of stool.

Her main symptoms were low iron, anemia, stomach pain and in the final 2 months before dx severe weightloss.

So yes it possible to have Crohn's without the usual bowel symptoms.
 
DS had and still has constipation with crowns- so bad it lead to rectal prolapse.
he also had an MRE- about an hour of imaging time.

his ferritin is low as well.
good luck
 
Thanks ladies much appreciated. She will have contrast via cannula during MRI but has to drink liquid first then given some buscopan I think through the IV to stop bowels contracting. Just wish we could get some answer now. She has been T1 diabetic for 10 years, now had chronic fatigue syndrome for five years and been so unwell. For the last five years they have kept saying they think something "else" is developing but not sure what. Lots of auto immune of both sides of the family. Had low C4 and borderline C3 in her complement bloods also. Had bowel problems since becoming T1 and suffered with constipation on and off for years but these last two years been in so much pain with tummy and last six months constipation getting worse. Good to be able to ask the questions on here so many unanswered. Thank you all xx
 
Hi Cat26, my daughter also has Crohn's with constipation. It seems like quite a number of kids here do.
I'm going to tag DanceMom, as she has some experience with vasculitis and immune disorders.
Hope the MRI goes well!
 
Unfortunately I do have some experience with vasculitis and immune disorders. According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN). Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.

A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects. An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future. We've put that off for now due to the risks involved.

As far as immune testing, we started with basic immunoglobulin labs and antibody testing. It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case. We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay. The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.
 
Is there anything I can physically do to help him? Apart from try and get a referral for the gastric team again?
What do you think the orange 'blood' could have come from?
 
DanceMom said:
Unfortunately I do have some experience with vasculitis and immune disorders. According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN). Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.

A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects. An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future. We've put that off for now due to the risks involved.

As far as immune testing, we started with basic immunoglobulin labs and antibody testing. It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case. We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay. The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.
Click to expand...

Dane Mom thanks for that. Unfortunately we are in Scotland and we have to go with the tests the hospital do - which can be very limiting. She has had full Rheumatology testing done and this is repeated every six months at the moment. Was involved with Immunology at the beginning and they diagnosed Idiopathic Angioedema as she gets swelling to her lips, face and left knee!!! They have always just said it is her immune system over reacting which causes this. I know they are keeping a close eye on things but don't do real indepth immunology testing - wish they did.

Thanks for all your help - have felt so alone - hubby putting head in sand and not facing up to whats going on. Feel like she never gets a break from ill health and just want some "normal teen years" for her. Hopefully we will get some answers from the MRI but not that optimistic as we thought we would get answers from endoscopy/colonoscopy.

Thanks again xxxx:)
 
My daughter's lips swelled at one point too. They would swell so large that they would split and bleed. She was on Prednisone at the time so the doctors dismissed it as "moon face". I'm not sure I buy that but I didn't push the issue.

Has she had her Immunoglobulins (IgG, IgA, IgM) checked? That's a very simple blood test that could give some important information about her immune system. It is a good starting point.
 
Yes Dance mum I'm sure she has. Unfortunately we don't get copies of her results. I had to request a copy of her file (and pay for it) and its up to the doctor which letters they let you see!! I feel I am in the dark as they usually only say whether the bloods are ok or just lately the levels of ESR, iron, caprotectin. Normally her Rheumatologist will just say whether they are "ok" or not - never get told levels and only once did she tell us about the complement levels. Wasn't till I got copy of file I saw level of C4 was 15 before she became ill and dropped to 8 and has only climbed back to 11 in last five years. I do have copies of some of her blood results but don't know what any of the levels mean. Am going to dig her file back out and see. Unfortunately don't have copies of any of her latest results.

Thanks again DanceMom for your help xxx
 
That must be difficult being left somewhat in the dark. Very thankful for our online access to lab results!!
 
Need some help ladies. Feeling really down today. Had phoned Gastro for Katie's MRI results last week and no one got back to me. Phoned again today and Dr Flynn just called to say scan was essentially normally. She had forgotten all about "pencilling her in for a capsule endoscopy and colonoscopy" if MRI was ok. Her lists are now full until after the 8th July even though she said it would be done the end of June beg of July. Asked about Calprotectin test that was done when she was in hospital on the 20th May and was still waiting on results of that also and it is now 856 which has gone up from 405 (Feb result), she had forgotten she had asked for the test again. Now she has saw this level it needs more investigating FFS! Now needs more stool tests to check for C-Diff (last two tests clear) and another Calprotectin. Will let us know dates for Capsule Endoscopy and Colonoscopy which she has new list available! She will discuss with Dr Davidson (Rheum) and get back to me. Asked if it could be her gastritis causing this level and she said no either infection or inflammatory bowel disease. Sje has also put the wind up me by saying on MRI her uterus was bulging with possible fibroids. She will need to speak to radiology again to see whether she needs an ultrasound and referral to adult gynaecology. She doesn't need anything else wrong with her for gods sake. Also been referred to Cardiology for Postural Orthostatic Tachycardia Syndrome. My stress levels are through the roof. This has been going on for months now. Getting fed up beyond belief. Just need to know what is wrong. Sorry just need to offload before I crack!
 
That's crazy I would be so p*ssed. Can she get her on a cancellation list for pill cam/endoscopy. Seems like she should squeeze her in somewhere/somehow.
 
Can you get referred to the kiddie hospital in London ( Ormond St.. I think ?)?
Can you GP send the request for you ?
While you wait since they seem to have longer wait lists.

That sounds horrid .
 
Thanks ladies. She has said her lists are FULL and it will be when she gets her new lists made up! Can't get a referral as would no a valid reason for second opinion and funding would be difficult to get. (Have asked GP before). He thinks it best whilst investigation ongoing to stick with Yorkhill. Got the stool sample forms and luckily she managed to "go" last night. Forms were for C Diff, C&S and Norovirus? I thought norovirus was a short lived virus. She didn't give us one for repeat calprotectin. Anyone any advice re C Diff? Her last two stool samples for "infection" came back negative but don't know if they were specific. Also don't know why she is repeating colonoscopy as she only had the other one end of March and biopsies were ok but she couldn't reach small bowel which is why she did MRI and is doing capsule endoscopy. She said she might as well do it as Katie would need the full bowel prep again for capsule! Concerned at the rise in her calprotectin going from 133 two years ago when they diagnosed gastritis then 405 in Feb and now 856 - what do you think about it? Also scared about the fibroids as she is only 17. Just want some answers from it all now. Thanks for being a listening ear.
 
Phoned GP today and her stool results for infection are normal. The couldn't do the C Difficile one as "c difficle toxin testing is inappropriate for non diarrheal samples". It was a normal/hard poo she passed so they wont test it but diarrhea isn't her problem it is more that she is constipated and only has it when she has taken loads of laxatives to get things moving!! Need to phone consultant on Monday to see if she has a date for us yet for capsule endoscopy and repeat colonoscopy!
 
Looking for any words of wisedom ladies. Katie had her upper GI endoscopy, capsule endoscopy and ileo-colonoscopy yesterday. Her consultant was on holiday so it was a replacement consultant. He said appearance of bowel and stomach was normal, even her gastritis has healed up. He managed to get biopsies from the top of the small bowel and end of small bowel. We have to wait till mid August to get the results of the capsule test as it will be her consultant who will review the pictures. We asked him if appearance normal why calprotectin was at 856. He said we would need to discuss with Dr Flynn but could possible be a false test. Here is where I am confused for the last six months her calprotectin has been rising, her ESR has been raised and her ferritin was really low. I asked Dr Flynn when she phoned us could it be a false calprotectin result and she said no! So as you can see I am puzzled. Her MRI was off normal appearance apart from the fact it showed a bulging uterus with possible fibroids (she is being referred to gynaecology for that). Can you get a false calprotectin test - has anyone else here had this. The one in March was 405 and the one in May was 856. This is all messing with my head as they were testing her for the medication for IBD as well. I know we have to wait on pictures from capsule but what if these show normal as well - what else could be causing the abnormal results for the last six months?
 
Sorry if I've asked this already, cat26, but I can't remember all the details of your situation. Has she been tested for Celiac? Celiac can cause a high calprotectin level.
 

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