I feel like the worst mom ever today...

[izzi'smom]

From what I understand (and I may be completely wrong) because you are reusing the rectum/inserting the small intestine some people have trouble with the sphincter dilating. He made it sound as if it was something every patient went through, but again, I may be wrong.

Looks as if I won't have to worry. Izz has been crying for two days that her mouth hurts after biting her tongue. I finally looked in there today and she is full of ulcers. Too coincidental...she is crohns for sure and not a candidate for a j-pouch. While I wasn't sure it would be worth doing, I wanted her to have the choice someday. I am again thankful for her doc, who texted me some OTC remedies at 8pm since the pharmacies are closed.
Now I feel pretty bad...I thought she was making a huge deal out of biting her tongue. We were in the car for 5 hours, in a docs office for two, and she was either crying that her mouth hurt or that she was starving (because her mouth hurt and she refused to eat). I TOTALLY yelled at her for it.

:award2:
(My mother of the year award. AGAIN! lol)

 

[crohnsinct]

Aw poor Izz.

Nice try Ang...you are still my idol!

 

[QueenGothel]

Poor baby, and mommy. Don't beat yourself up. Hugs to you momma.

 

[killcolitis]

Hi Angie,
I'm a new member though I've been reading this board for a while now and it's been very helpful. I have a now six year old dx at 3.5 with pancolitis (UC knock on wood). So, I understand some of what you're dealing with and I am so sorry.
Your last post about mouth ulcers prompted me to register because if they've never been a symptom for her before there's a good chance they could be caused by the tacrolimous. It's not uncommon for immunosuppressive drugs to cause this (happened to my daughter on Imuran and our GI made us get off asap). It might or might not be a sign of toxicity. You might want to google this and speak to the GI about it? Just a thought and sorry for butting in on your thread...
Sherry

 

[killcolitis]

Hi Angie,

I tried to attach some links for you (I know you're busy, can't imagine how you do it really) but they won't let me unless I've posted for a while. Might be good to talk to your pharmacist as well?

Sherry

 

[QueenGothel]

I goggled it and there are link is everywhere. Sorry for Izzi having the side effect but it keeps my hopes up for UC. I hope this is the reason why she is having mouth ulcers. Man these drugs are brutal.

 

[Tesscorm]

Aww Angie, we mom's are allowed to make mistakes too! Emily hurt her foot in soccer once, (had gotten frostbite, which we never imagined at all!, from the ice pack) and, the more she complained about her ankle, the more we told her to ice it! AND, great parents that we are, we kept telling her that twisted ankles come with soccer and to 'suck it up' if she wanted to play soccer! My mom :facepalm: finally came to Emily's rescue when she offered to take her to the clinic to check on her ankle the next day...

Would probably make a fun thread - What have you done wrong as a parent? Please limit responses to your Top 25! :lol:

I hope Izzi's feeling a bit better and that the sores are quickly relieved! :Karl:

 

[crohnsinct]

Would probably make a fun thread - What have you done wrong as a parent? Please limit responses to your Top 25! :lol:

:roflanim::roflanim::roflanim: Literally laughed out loud! Limit responses to Top 25! Hysterical

 

[Jenn]

Alex had a bout of bad mouth ulcers last fall. The doctor suggested 'magic mouthwash': 1 tsp liquid kids benadryl, 1 tsp maalox, swish and spit, don't swallow, twice a day. it really helped the pain for him til they healed.

 

[izzi'smom]

We have been doing the benadryl/maalox every hour and chloraseptic every 15 minutes. I am told our magic mouthwash (lidocaine mouthwash) will be ready at the pharmacy in 1 hour. TY kilklcolitis...off to google...so much for sleep before work toight but I am super hopeful it is a SE!!


ETA Texted her doc who thinks it is unlikely that it is toxicity as her labs were at the low end of normal...we were planning on drawing her levels this week and I will be sure to get it done tomorrow now. Thank you so much for piping up...it is something I hadn't considered. :kiss:

 

[Shansmom]

Ditto on the Maalox/Benadryl mouth wash. It worked well on Shan when she had mouth ulcers as well. Angie - you are a great mom. Izzy is in wonderful hands. We all learn as we go along and we learn from each other. Hang in there. Take a deep breath. Thinking of you both.

 

[izzi'smom]

...and the saga continues

Her friends mom texted me this am that Jule woke up with mouth ulcers after our playdate yesterday :shifty: It was coxsackie :facepalm: not Crohn's, and we totally infected her friend! I am going to assume that Xaviers awful teething episode last week was also coxsackie related, and that he infected them both. :ywow::thumbdown:

The great news is that I am back down the differential diagnosis path, able again to entertain the notion that she may be UC!

I think her doc gets the Saint2 status, J...for putting up with my crap! I texted him last night about the Tacro toxicity and he is so good about it...he must hate the Google competition some days! PITA mom and Saint2-what a team lol! He still took a look at her (to save us from a peds office visit) after getting her labs drawn, plus texted me the results this evening. Her Tacro levels should be back tomorrow.

 

[Johnnysmom]

That's great news. My daughter Brooke had Coxsackie and it was soooo painful for her. She really didn't eat much at all for a few days. She was vomiting also. Sorry Izzi is sick but so happy it doesn't look like Crohn's. Brooke took about a week to get better.

Hang in there and let Dr. Wonderful take care of you both. He sounds like a great guy.

 

[QueenGothel]

Like sands through the hourglass. The crazy world we live in where we hope for a virus or UC. I am full of hope again with you. I hope she start feeling better soon.

 

[crohnsinct]

Go figure!

I am only 4 months in and I can't tell you how many things I have assumed were due to O's IBD...and the more I read here the more I find other things in the past that should have tipped me off.

What a bunch of whackos we must sound like celebrating coxsackie and UC but YAY! Back to hoping and planning for the surgery etc.

 

[mikayla]

Izz got her ng tube and has been crying since 3:30. She is finally asleep (8:30) and now it is my turn to cry.
I swear she has been in the bathroom twenty times today, plus she has vomited three times. Her belly hurts, she has an awful rash on her backside, and her throat is sore. She vomited up the 20 ml of peptamen I gave her...I feel so awful!!! She said today "Why do *I* have to always do this stuff"

So I am hoping against hope that her rash will be clear, her throat will feel better, and the Prevacid will work against her nausea in the am. A better day, right?! I feel like it can hardly get worse.

Plus my parents, after telling them it wasn't a good night for a visit, *had* to pop in for a visit. I love them to pieces but I truly had my hands full and Izzi was just beside herself crying. They brought her some lovely flowers and me a beautiful ring for my birthday but AARRGGHH! Plus I had to put my pj's on and say goodnight three times to get them out the door.:angry-banghead:

Thanks for listening, and anyone doing EN have vomiting problems? We are doing 5-7 cans a day via gravity feed instead of night feedings per our doc's preference.

Ahhh, you are not the worst parent. Izzy is amazing and so are you! In my thoughts and prayers! Mik's Mom