difficult child 1 in a Crohn's flare

[gcvmom]

or so it seems. For the past three weeks, he's in the bathroom a LOT, feeling the urge to go, but not always able, and generally feeling crummy. His GI has him on Miralax, and I'm now supposed to double the dose, which is helping a bit. He did need an enema last week and that left him feeling a lot better. But the constant trips to the toilet and not producing anything is getting old. Plus he's been having bloating and nausea on and off -- which worries me the most because it could mean that the scar tissue/stricture he had/has in his small intestine has been irritated again and is heading toward another partial obstruction. And that's what almost landed him in surgery about two years ago.

He's going back to see the GI next week. I sure hope we can get to the "bottom" of this (yeah, I know, bad Crohn's pun) and resolve these symptoms. This is not the best way to start off the first year of high school.

 

[tiredmommy]

Poor kid. There must be something in the air... my cousin's crohn's is flaring also. I hope it resolves quickly.

 

[flutterby]

I'm so sorry difficult child 1 is going through this.

I don't know what I have going on, but what you described with difficult child 1 pretty much fits my GI symptoms....and it stinks in a big, big way. Miserable would be a step up some days.

I hope he gets relief soon.

 

[gcvmom]

Heather, I kinda was wondering about that as a possible diagnosis for you in the back of my mind. The fact that they didn't get into your small bowel makes me wonder if it was because they just couldn't reach, or was the IC valve too tight for some reason? Have they done a small bowel follow-through exam? That's the one where you drink the yummy (NOT) barium shake and then they take xrays every so often until it passes through to your colon. That's how difficult child 1's Crohn's was confirmed and they found his stricture at the end of his terminal ileum.

I checked his belly tonight and he is somewhat bloated (which isn't hard to see on the skinny kid!), and he's tender down low and to the right where his stricture was before. We know the scar tissue is still there, but the inflammation had subsided and the intestine had opened up to almost normal caliber when he was scoped a year ago April.

I'm thinking, though, that the movie popcorn he indulged in the day he came home from Crohn's camp irritated things, caused some constipation, and then he came down with a virus a week later and so his immune system was under assault and so we now have this mini flare going on. It's just too complex and unfair.

That seems to be our life, though, especially over the last four years. First it was difficult child 1's Crohn's diagnosis, then difficult child 2's movement disorder and resulting bipolar emergence, then husband's seizures and surgery... I WANT OFF THIS RIDE!!!

I hope you get some answers soon, too.

Thanks

 

[flutterby]

It's very unfair. I really feel for difficult child 1.

The surgeon didn't say why he couldn't get into the small bowel, just that he tried but was unable. Hopefully my GP will have the report when I go to see her next week. I will also talk to her about the barium test. Biopsy results came in today and everything from the colon is ok.

My pain is lower right and the right ovary - where the ct scan picked up something vague - is in the same place as the ileum, which I understand to be where the small bowel connects to the large bowel. My abdomen is soooooo tender. The kittens were playing on my bed, I was lying on my side, and one of the kittens - about 4 pounds maybe - rolled into my belly and I cried out so loud that they tore off my bed.

You need a break. It's time for life to cut you a break, dontcha think?

 

[BusynMember]

Ah, I feel so bad for your little guy. My brother has had Crohn's since he was twelve and I know exactly what it can be like. He is fifty-two now and on a slew of medication and he gets tired easily. I hope your little one goes into remission soon. Stress brings it on a lot with bro and wondering if maybe school is triggering it. At any rate, I do hope he is feeling better soon. Sending healing vibes.

 

[Wiped Out]

I hope he is feeling better soon. Hugs to you both.

 

[gcvmom]

Heather, yeah -- some days my armor wears thin!

MWM -- I don't think it's stress related yet since we're not back to school until the 8th. I really think an overdose of popcorn followed by a virus kicked up the flare. It's easy to tell him to avoid foods that irrtate him, but in reality, it's much harder for him to practice since most of them are foods he loves.

Thanks Sharon

 

[crazymama30]

hugs. Chrons is a bear. I see many Chrons pts at work. Hoping it calms soon.

 

[gcvmom]

Thanks CM. The GI just had us double up on the Miralax which helped him get rid of a lot of.... well, you know And he felt soooooo much better. Not perfect, but better. I'm pretty convinced that his stricture is causing his gut to back up, thus the nausea -- and that's why he felt a lot better after relieving himself. Hopefully just time and a low-fiber diet for the next month or so will help everything open back up.

 

[crazymama30]

I hope he can stay out of the hospital. And stay the heck away from surgeons! At work I work part of the time with the wound ostomy nurses, so we see a lot of Chrons pts, at least ones in the more advanced stages.

 

[gcvmom]

We have a friend who lost her colon at age 9 to severe UC. She has a j-pouch now, and is doing great two years later.

difficult child 1 came very close to having a resection about two years ago. But thankfully, his current GI opted to give him more time and more aggressive drug therapy, which seemed to work.

He may eventually need surgery some day, but if we can hold off until he's done growing, that would be so much better. He's not quite caught up on the growth he lost from age 5 to 11 when he was finally diagnosis'd.