Chronic Fissure and now more than one

[sminks]

Hello! My 12 year old has had a chronic fissure for 2 years. After the first pediatric we did miralax and high fiber foods and the blood in stool stopped. It came back and we saw the GI who didn't see a fissure but recommended colace. We ended up do a endoscopy and colonoscopy and all came back clear with no fissure or blood seen. She has blood in 75% of her stools. After the clean scopes the doc was at a loss and sort of seemed to be throwing ideas against a wall.We saw another GI who said she saw a fissure. We did high doses of miralax and rectiv. No changes but stomach cramping and uncomfortable loose stools. Being a teen, she hates the miralax so begged for pills. She has been taking Linzess for 6 months and it just doesn't seem like its doing anything and we switched to nifedipine. We went back and now it seems like she saw 2 fissures. My daughter is depressed over her lot in life and "why no one else has to deal with this." We do have a family history of crohns but scans were clear. We discussed botox but it seems like missed success on that. We dont want to do another scan as the prep was traumatizing for all of us. Anyone have any ideas? We are going on 2+ years of my pre-teen having blood in her stool.

 

[my little penguin]

Did they do an MRE (mri with entography )?
A capsule endoscopy (pill cam )?
rectal suppository with or without steriods can help done at night

Miralax one pack a day (17 grams ) can keep things soft to not cause pressure but not loose to cause accidents

My kiddo was dx Crohns at age 7 and now 19
Takes miralax every single day
Finding the sweet soft but not too soft is the key

Also check with motility Gi
Columbus has a good children’s one
Gastroparesis can slow things down and cause issues

 

[sminks]

Hello! Crowd sourcing for help. We are till dealing with blood in my daughters stool for 3+ years now. She doesn't have pain and is growing and eating just fine. We have done creams and stool softeners. She has never been constipated but likely goes too much. Nevertheless, we do miralax regularly to keep things flowing.

The doctor wanted to try rectal suppository (canasa) but she tried it and could not get it in and threatened child abuse . It was very large and I am not sure how others do it. I am trying to respect her boundaries as a 12 year old! In April of 2022 we did endo and colonoscopy and the doctors saw nothing and biopsies were all clear.

We switched pediatric GIs after this because the DR was very dismissive after clear scopes. New GI was positive the issue was fissures. Unfortunately, the fissures have not responded to traditional treatment. Apparently almost all her other pediatric patients have responded to fissure treatment and I feel like we are throwing the spagetti against the wall. The colonoscopy prep was VERY tramatic for my child and now new GI is suggesting another colonoscopy since it has been 18 months since last. Is there something else in between? If she doesn't have pain, can she live with fissures. I am trying to balance my daughter's sanity and health. Its hard when the main and only physical symptom is blood in stool. Help!!!

 

[my little penguin]

Canasa
My child used them at 8.
Ask your Gi but they can be cut in half them smoosh the cut side so it’s not sharp .
Did they biopsy the rectum and sigmoid ?
Any MRE imaging or capsule endoscopy ?
what was the fecal cal ?
12 is tough for a girl .
Have you tried probiotics ?

visobiome makes a prescription strength version which taste foul but are used for UC treatment .
My kiddo uses it for crohns rectal issues.
You can also just order regular strength packets x2 to get the same strength at prescription. That was what our Gi suggested when we couldn’t find a pharmacy willing to keep it in stock .

you can also take 5-asa pills -asacol or Pentasa
Not sure how well they reach the rectum though.

does she set a time limit so she isn’t pushing too many times or too long ?
Have they looked at pelvic floor issues ?
Sometimes the muscles don’t contract they should and that leads to feeling the need to go (at per one of my kiddos gi’s over the years )

do her other cuts scrapes heal quickly ?
Has she seen a gynecologist?
Imaging to make sure no fistulas from one area to the next ?

 

[my little penguin]

MRE imaging is the only way to know if there is a fistula (tunnel -thin ) from one area lot another as a source of bleeding maybe …

there is also rectal foam
But if she doesn’t like the suppositories the foam has the top similar to a can of hair mousse to apply it to the rectum /sigmoid area .

add in the foam hits areas higher up

 

[my little penguin]

Food intolerances or allergies ?
That can cause bleeding in the gut if irritated .
Blood work inflammation normal ?
Any other weird rashes or mouth ulcers ?
Joint pain /stiffness ?

 

[my little penguin]

So calmoseptine is a barrier crème for the bum that can keep the skin from irritation similar to diaper cream .
Cottonelle has wet wipes that are flushable Incase it’s another route of irritation.
They come in unscented

 

[sminks]

We just got back our calpro results and it was at 1100 . We were at 295 a year ago when she had scopes that all looked normal and they brushed us off. Only symptoms are blood in stool and fissures that DR saw. Is calpro that high an urgent situation? I want to switch to pediatric IBD specialist but there is a small wait. We are on our 3rd pediatric GI. It also still hasn't been a year since her scopes and I know she will lose her mind about doing scopes again.

 

[my little penguin]

1100 is definitely high .
Are you currently seen at a university based university pediatric Gi ?
What particularly does she not like about the scopes ?
The scope itself ?
The prep ?
Sore bum ?
Nausea ? Vomiting ?
They can give her zofran so she won’t puke
Miralax /gatorade plus ducolax is the easiest prep on the system we have found for ds
Low residue for a few days prior with miralax
Then the official prep day before
Calmoseptine as a barrier cream to protect the skin .
Scope itself they can give gas prior to any ivs so she won’t feel anything
You can ask to stay with her till she is out depending on her age .

one year for scopes isn’t really what happens if you have. Crohns
Flaring badly means scopes regardless of last scopes especially if meds are not on board or not working

they should also do imaging since it could be hiding in small intestine and not seen on scopes

 

[my little penguin]

If your inpatient /adults they have you start prep at 4 so technically she would not need to miss school the day before only the day of the scope and back to school next day .
Just means she will be up all night

I would expect scopes /imaging/bloodwork with fecal cal that high

 

[Maya142]

Honestly, I would do the scopes. I know your daughter won’t like it but she would hate being hospitalized more. My daughter also hated missing school for scopes. Sometimes she went for half the day on prep day (we usually started prep at 12 pm) or we tried to schedule scopes on a Monday so prep would be on a Sunday. A fecal calprotectin of 1100 is definitely high and even if scopes a year ago didn’t show anything, scopes now might. It’s also possible she has inflammation in her small bowel, in which case you will need an MRE and/or a pillcam.

No one likes doing scopes, but it’s better to catch IBD early as possible so that she can avoid complications like abscesses, fistulae, scar tissue and surgery. You want to avoid permanent damage if at all possible. IBD can be very nasty if you don’t get it under control.

Ask your daughter what exactly she hates about prep. See if you can work around that. Doing a low residue diet (low fiber) for a few days before prep day will make cleaning out easier for her. Like MLP said above, a barrier cream like Desitin or Calmoseptine will help with soreness.

My daughter would always have some tv shows or movies to watch on a tablet so she was distracted while doing the prep. And you could promise her a small reward after scopes.

 

[my little penguin]

Why do you want to switch to. Pediatric IBD specialist?
All will suggest scopes /imaging at this point .