What can be causing this right sided pain?

[Stephyjane]

Things have been going pretty good for a few weeks, occasional abdominal pain and constant constipation issues. Need to do disimpaction regime with Movicol every 2-3 weeks, even though I have Ella on maintenance dose of movicol, she just seems to start backing up. But still that has been good for us.
About 7 days ago Ella started complaining on a sharp dragging pain above her belly button and in the lower right side, we visited the GP who couldn't find anything acutely wrong so said just watch and wait. Well this past Thurs and Fri we ended up at the hospital, Ella's pain is very bad in the lower right side, but after bloods came back normal we have been sent home with a plan of possibly moving her Infliximb forward a week.
So I have a very unhappy little girl who STILL has an awful pain only paracetamol to take which does nothing and now is struggling to go for a bm again. She last went 2 days ago and was a very small amount.
I feel like I'm going crazy, we have a good few weeks then problems occur again. I feel like something is being missed.
Another week of secondary school missed.
Could inflammation in the TI cause this pain and constipation? And not show up on bloodwork.
I'm sorry if I've rambled on. Steph

 

[Novice]

Hi i am so sorry your little girl is dealing with this!
i too suffer bad constipation and i just in the past year or 2 suffer constant abdo pain.
I didnt get many answers to begin with, the nhs were only interested in dosing me up and sending me home when all my bloods came back normal.
it could simply be that she is just constipated, or she could have some minor narrowing, i had an xray to check for narrowing when i described the pain i was in and it came back clear, after another week of phoning the dr complaining they booked a CT where they found narrowing in the small intestine! (narrowing could be scar tissue or inflammation)
JUST BECAUSE TESTS COME BACK NORMAL DOES NOT MEAN NOTHING IS WRONG.
you and your daughter understand what her "norm" is and if you are not comfortable keep pressing your doctors to find the answers.

Good luck i really hope she feels some relief soon

 

[Stephyjane]

Thank you Novice for your reply.
Ella had an mri of her abdomen in late Aug and it showed thickening in her TI which they thought was inflammation and that hopefully the infliximab would clear up.
Normally when they examine they feel if there is fecal loading and then we know she's getting backed up again. This a definitely a different pain to what she gets when she is constipated.... Although she hasn't been for a couple of days again so?

 

[Novice]

it could be that shes inflamed and the constipation is aggravating it... maybe try dosing her up on some miralax or movicol and see once she has a bm if it improves. The way i can usually tell if its constipation or my TI inflammation is whether i get pain after eating or whether its pretty consistent. If its worse after eating its usually inflammation....
I hope this helps and she feels relief soon.

 

[Jmrogers4]

Jack's blood often comes back normal but fecal calprotectin shows inflammation, so yes blood can be normal when inflammation is present

 

[Stephyjane]

We're taking a sample in tomorrow for the calprotectin test. Ella's managed to have a bm twice today which was not formed at all and lots of it, she's lost just over 2lbs in weight in the last week, but has been off her food so that figures.
I'll talk to her consultant tomorrow to see if he wants to move her Infliximab forward to this week and hopefully that'll nip things in the bud if that's what's needed. Thanks x

 

[Devynnsmom]

I assume they checked her appendix? If not, I would go back and demand that they ultrasound her belly. An appendix can act up for a while. A friends daughter was sick for two weeks, they kept going back and forth to the dr. Woke up one morning and her daughter looked green. They went to emerg andher appendix had ruptured. She ended up airlifted to children's hosp, had surgery and spent two weeks in ICU.

 

[Stephyjane]

They examined her for appendicitis, they said even though she had rebound tenderness she had no temperature and wasn't displaying other signs of appendicitis.

 

[Stephyjane]

I let Ella's consultant know today that Ella still has a lot of abdo pain, but didn't hear back as to whether she'll have her infliximab this week!
The last 2 nights we have a new symptom, the feeling of a lump in her throat that is sore. It went away during the day but is back tonight. She says it is painful and I am at a loss as to what to give her to help.
Hopefully we'll hear something tomorrow.

 

[Stephyjane]

Had a phone call today whilst sitting in the waiting room at the dentist. ( not the best place to be talking descriptively about bm's ) the GI wants to wait until next week to give Ella her Iniximab and see what the Calprotectin result is and go from there. I got the dentist to check Ella's throat for soreness and he said all looked good. I'm wondering if the painful throat at night is an acid thing?!

 

[DustyKat]

Hey Stephyjane,

Sorry to hear Ella is having problems.

The pain you are describing certainly leads one to immediately think of something going on in the terminal ileum.

Just a thought...Infliximab whilst being an excellent drug at healing inflammation it can do its job too well and in doing so it can heal too fast and so produce scar tissue.

Scar tissue can cause pain (it is inflexible), narrowing (which causes back up, constipation and pain) and will produce normal blood and FC results as there may not be accompanying inflammation.

Dusty. xxx