Nervous again... Constipated or not???

[QueenGothel]

Rowan has been battling her UC ever since we got home from the hospital. We had 2 good days then things went downhill.

The symptoms: pain, diarrhea, increased trips to potty.
GI: possible blockage... Miralax twice a day.
Symptoms: pain, diarrhea, black powdery old poop... Sometimes like coffee grounds sometimes like black bark broken off old stool
GI: keep using miralax twice daily until it looks like applesauce.

(More of the same for the next 3 days.)

New symptoms: extremely watery diarrhea, figured I should back off miralax to once a day...
12 hours later: thicker looking applesauce tinged with blood. Not a ton of blood, just enough to let me know it is there. Kinda like pink applesauce in spots.

This morning: miralax again, no bm yet belly is distended. No complaints of pain. You guys think I should do miralax again? Uuugh

Waiting for the GI to call back. I am nervous bc she usually starts bleeding and then before I know it we are being admitted to the hospital and getting a blood transfusion. Her previous drugs to treat the UC were causing rectal bleeding so now she is on remicade. A little bleeding might be 'normal' UC behavior bc she is due for her infusion on Monday. idk what is normal... It is messed up to think bleeding is normal. Right?

Should I be sooo very nervous or just chill out have a glass of wine and relax. Worried

Hard to tell if one is constipated or not when pushing the miralax.

 

[QueenGothel]

Ok... GI called back said to give her more miralax again. She drank half before the screaming began. She says it burns... Ouch ouch ouch. Mommy fix it put Vaseline on it. Cannot see anything wrong with her butt. A little bit of a rash but nothing too crazy. Five minutes later more mommy more. Ouch ouch ouch. I ask is it you butt or your belly she says my butthole. So I inspect again... Nothing. Put her in a warm bath with some oatmeal. Gave her some Tylenol and a&d. Idk what is going on she is sleeping now. Yes to sleep at 7pm.

She had a bm at my moms. It was coffee ground like and then brown pudding. My mom said she might have had prolapse but just a little bit like a grape. I saw something and I pushed it back in like you told me to do. Hmmm what did she see? A hemmoriod? Rectal prolapse?

Called the GI again... Told me to do what I am already doing but to use only Vaseline not a&d incase of fissure.

Wth?

 

[Jennifer]

Who told them to push anything back in? Is that the norm? Last I heard about things coming out you're supposed to leave it and go to the doctor straight away. There's no way I'd push stuff back in.

You can't see where it hurts on her because its inside, the other side of the anus. A colonoscopy would have shown hemorrhoids. When was her last scope or any tests and what did they say?

If you aren't comfortable with her GI (I know I'm not) then maybe you could see another one. One that works well with children and is a little more active with the parents to let them know what's going on.

I guess you could say blood is normal for some people if they are in a bad flare but its never really normal. Has the doctor talked about what's causing her blockages?

 

[QueenGothel]

The hospital told me to push them back in. She had rectal prolapse while at the hospital. Then we switched the the best hospital in the state. They told me to do the same I guess it is common with kids with UC.

This is her 3rd GI and he is out of Motts children's hospital. All they work with is children. He actually is a fellow and reports to a higher GI. Her last scope was in October and they will not do another one bc she has been inflamed since. They almost removed her colon if it weren't for Remicade.

I haven't saw more blood. She got up 4x through the night. They told me to back down on the miralax to 1/2 dose twice a day.

Can't wait until Monday's remicade infusion. I hope to god it helps her heal more. Poor baby apologizes when she goes potty. I wish I could just take the pain away.

 

[DustyKat]

Hey Mary,

That's right, it's normal to push a rectal prolapse back in. I too hope more than anything that she gets further relief with the next infusion. :hug:

In my thoughts and prayers, :heart:
Dusty. xxxxxxxx

 

[QueenGothel]

Ohh and the blockage is inflammation and poop. She is so inflamed if any poo stays in there for too long her colon just sucks all the water out and makes it like petrified poo. They don't want her to push at all. Unfortunately their miralax direction half a cap is really a whole dose. They said half a cap and meant half a dose twice a day. So yeah I have been doubling her dose. 17 grams is a half cap. Grrrr! So now just 8 grams twice daily. I am only going to give her like 4 grams.

 

[QueenGothel]

2 more episodes of rectal prolapse. GI hopes/thinks remicade will bring down her inflammation and within a week we should stop seeing it. Rowan keeps apologizing for pushing. I don't see much posting for prolapse on here. Is it not a frequent occurrence for others? I am assuming it is bc it is prevalent in kids under 6 and geriatrics. Doctor says to look for the color blue or purple on the actual prolapse. This could be a dangerous issue. She is very tired and won't eat much so far today. Hoping we can get her to eat more after this nap. She was up all night last night. She also looks very pale. So glad we have an appointment tomorrow for Remicade infusion. I told her it was just medicine we are going for. She is going to be so upset when they put the IV in her arm. She is going to think she is there for another stay. Really not looking forward to going but am looking forward to the remicade helping her.

 

[Jennifer]

Hope the Remicade helps. My response was in case that was the first time it ever happened. I wasn't aware it happened often for her. From what I read its is possible to take care of it at home if instructed but it also mentioned to always let the doctor know when it happens. I don't know much about it really and would be worried if it kept happening over and over. I didn't even know there was a proper position to be in to push it back in. I learn more on this forum every day.

What do they do with the solid powdery poo? Even if Remicade helps with the inflammation, there's still a mass. Does it always pass after the infusion? Serious question cause I've never dealt with this before.

 

[QueenGothel]

They think the bowel obstruction is done. No coffee grounds in 2 days. I do call the GI when it happens. He said to just keep pushing them back in. If purple or blue to call. She had a fever of 101.2 also. I called again. Not concerned. She finally ate something once fever broke... A pancake and some potato chips (low salt). She is outside with her dad now... Getting some vitamin d and exercise. What a day.