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QueenGothel

QueenGothel

Joined
Oct 13, 2011
Messages
1,557
Location
Michigan, USA
So since the omentumectomy we now have hit a rest button apparently. Rowan though doing great is not using the toilet all day and has all of her bm's at night. So today bc she was looking full/distended I realized all the foods she :heart:LOVES:heart: are now off limits, they bulk her up too much? Or is her transit time slower than most?

I think... She now needs whole grains and fruits and veggies everyday in her diet to remain regular... Just like everybody else. Though this is very cool and I am not by any means complaining bc I love to eat healthy vs all the mashed potatoes we have been eating. How the heck am I going to convince her to eat this stuff instead of her waffles, bananas, mashed potatoes, milk and cheese she loves.

I think I can... I think I can... Chugging along with cupboards jam packed with bulking foods. :soledance:

How awesome would it be to ditch the Nutren Jrs for real foods. Kinda excited in a idk how I will get her to eat that stuff again sort of way. I have been telling her she can't eat these foods bc it will give her the runs.

Crazy!
 
Aw, poor girl. I guess there are worse things than having to eat healthy, but I'm sorry she is having to get away from her favorite foods so soon :(
 
Gee Mary, your thread title kinda scared me a little! Glad it wasn't what I thought! Hope the diet change goes smoothly:)
 
Dexky, I thought the same thing Ohhhh Nooo. Healthy food is good though. It is a nice problem to have
 
Sorry I didn't mean to spook you all. She is a little distended before any breakfast. I am a little paranoid now. :shifty-t: of course it is the weekend. The distention is higher up in her upper intestines again. Idk if this is temporary or if it is going to become an ongoing problem.
 
Good luck with the diet changes. Definitely NOT easy for little ones. When Danny did SCD I found loads of SCD recipes with lots of fruits and veggies that I thought were very good, but he did not like most of them. Maybe Rowan will find things she likes.
 
Good luck with those diet changes! I know my kids do not cooperate with that. They came out with new whole grain chocolate chip waffles from eggo. I bought them and of course the kids were like they don't taste the same we don't like them. Ugh!
 
How's she doing with the new diet changes so far ?

Thinking of you ~ and I hope things are going well for you now that you're home :hug:
 
Only having about 2 bm's a day, with no Imodium needed. Which is good, if this is her baseline and if it is her new normal. It is just weird to go from where we were. They told me she was the shining star bc she was only having 5bms a day with Imodium. Now she is literally like someone with a colon. Is it bc this is her new normal or is there a mobility issue and she is moving slower. I don't know. They don't know. Just have to wait and see I guess. Is the slight distention normal or are her intestines still a bit dialated, is it slower bc they haven't returned to normal size yet, will they return to normal size, are they back to normal? Trying to be cautiously optimistic.

Afraid to say anything too positive bc I always feel a jinx when I do.

She is doing good with the new diet, there are somethings she refuses to eat and sometimes she doesn't even notice it is different. She didnt say anything about the waffle.
 
Hey Queen! So glad you are both home!

Couple of suggestions about replacing diet. Don't go whole hog..kids smell ya coming and will revolt. Try one or two things at a time and slowly. If she is a white bread eater and has a sandwich use one slice wheat one slice white...that kind of thing. Rice half white half brown. Cereal half Fruity Pebbles (yes I am bringing those up AGAIN!) half all bran (barforama).

Also, I had a doc counseling me years ago when my 18 year old was 5. He said it takes many consistent exposures before a kid accepts a new food and don't give up. So for us it was broccoli. So broccoli with dinner EVERY night for about 15 nights. Also don't put too much on their plate..overwhelming and you throw out less:) So we did one piece...with cheese sauce. Also, it was the first thing on the table and we waited dinner until she was starving. By the end she was so hungry she dove into the broccoli and before we knew it no cheese sauce.

Through it all we didn't make a big deal. Just put the broccoli there. If she ate it she ate it..if not we threw it out. I swear it took a while but by the end she ate it.

The same thing happened with each food.

Good luck!
 
So all was going well until last night. She was consistently having 2-3 BMs a day on normal foods. Then WHAM... All diarrhea and explosive gas since last night at midnight. She is still having the same amount of bm's, but I fear she is in the beginning stages of another bout of pouchitis. I hadn't been giving her any medication beyond one pill of VSL she is supposed to be on two a day. I was easing into it, fear I should've been more proactive. Awaiting her surgeons response as to what we will do. Assuming Flagyl course is in her very near future. She is not complaining much, just at night when she wakes idk if it is painful she says not, but she tends to hide things. I hate that she feels like she cannot talk to me about it in fear I will take her to the hospital. Maybe she is just very tired and doesn't want to get up?!?

Today is my youngests Birthday Party. Her actual birthday is tomorrow. Can't believe she is going to be 3. How time flies!
 
Enjoy that birthday!! Three is such a great age!

I am sorry you are in another wait and see situation with R. I know I get nervous when things look like they are headed in the wrong direction and the waiting is so hard. Especially because this is uncharted territory for you and her Dr.'s.

((((((Hugs))))))
 
Omg! I asked for them to flavor Rowans Flagyl, it is so gross! I can't get the taste out of my mouth. What flavoring did they use??? Dirt, seriously I would sooner eat mud pie! Disgusting!
 
Grace had one flavored worse the grape and one plan. I swear the plan was better. Flagyl is just nasty but I think adding the extra flav (sugar) just makes it worse.

How's Rowan?
 
I am at a weird fork in the road. I see two bridges and sometimes I have to choose which bridge I am going to cross. I realize we are supposed to wait for the bridge and cross them as we get to them. Is it wrong that I want to stay at home and avoid the bridges all together? I have to let Rowan out of the bubble and she is on antibiotics, everyone wants her to go back to school on Monday. (Tomorrow) She has pouchitis we think and I am fearful if I let her go I could get confused with virus symptoms and pouchitis symptoms bc they are the same symptoms. Preschool is so Germy and she is ahead of her class. She can write and spell her name she knows all her shapes, colors, how to add with her fingers, upper and lower case letters.

My DH says we need her to feel normal. If she gets sick is this the normal we want to see, now that she is home after two major surgeries, and a ton of antibiotics now on another one, she could end up in the hospital for dehydration if she gets sick with diarrhea. Or keep her home avoid the hospital and our normal is a well child.

She loves school and is looking forward to going tomorrow, but now I am torn.

Am I trying to avoid hindsight altogether? What do you guys think? Am I too protective? Are my walls up?
 
Oh that is such a hard situation!! I see your husband's point but I also understand yours. I worry now that when we finally get things straight and C goes back to school he is going to be so overwhelmed with all the missed instruction and work that it is going to negatively affect his CD. In his situation we may do independent study until he is caught up missed work wise then start back with in class instruction.

Sending hugs your way, it is a really good thing she is eager to go back but I know it is a stressful decision.
 
Hugs
UNfortunately given her age she will get sick
It is just a matter of when
But if your just going to keep her home forever- no stores no parties
With no contact including siblings yourself or your husband
She she will still catch colds.
The fact that she is out of the hospital and well enough to go to school is a good thing.
Normalacy is a good thing otherwise
Kids start to only see themselves as broken or defective
It doesn't make it less scary for you
But she can stay in a hospital room forever
And keeping her home away from life is just that.
Letting go is risky
But while it works the rewards are wonderful
You get a child again and she gets her childhood again
Something very precious to all of us
Hugs
 
Not too protective. Preschool is optional. Rowan doesn't need it and she doesn't need to be exposed to all the germs she is going to get exposed to there. This might be one of those times you've just got to have tough love until she's been healthy longer. The days of having to go to school are still ahead of you. Perhaps you can work out a playdate with another child she enjoys spending time with to reduce the exposure at this vulnerable time in her life, but still allows her to enjoy some social time with a friend.
 
I'm with you. I'd probably want to keep her home as well.
How long does preschool go to? End of May? June? So a few more months. Are there other activities she could do/join for the socialization? There is always next year when she is feeling more healthy.
It is a tough decision as you want them to lead as normal a life as possible but not at the cost of their health. IMHO, What is a few months in order to get her healthy, you have been through so much lately that just a calm time of healing may be called for.
 
I have to side with carolinalaska and jmrogers. If it were me I would keep her home and just do one on one play dates where you can hopefully control her germ exposure by telling the parents I. Advance the situation and that you need to know if they think their kids are getting sick or have been exposed to anything. A you said she is already ahead there is no reason to expose her to all those germs unnecessarily.
 
My gut says let her go but I know it's a tough decision! You'll always be left second guessing those bridges Mary! Ugh, we're all forever damned if we do and you know the rest!
 
Remember you can homeschooling her for pre-k if you want to also.
Grace has Pre-K homeschooling for 30-45 minutes everyday. I treat it as if it were real school because it is. She loves it and I'm sure your other dd would love it too.
 
Well I made a deal with her. I told her she could go to school. She promised she will make sure her friends know to cover their mouths using their elbows. She said if she sees someone sneeze or cough she will tell them to go wash their hands bc she doesn't want to get sick! Ohhh I am sooo sad, she is leaving right now. Hey at least it is only 2.5 hours right, next year will be more difficult!

Thanks Everyone! She will do good, I just am not ready to let my walls down.
 
:ghug: Hugs Mary :ghug: Very tough decision to make and as Dexky said, we will always be second-guessing our decisions!

It's so hard to let go when they seem so vulnerable! :( Sending lots of wishes that all goes well!
 
Rowan has been complaining of back pain this is the second time. She is on Flagyl right now, anyone have any thoughts? Waiting for clinic to call qme back.
 
Id love to tell you not to worry. But, Claire routinely complains of back pain......

Praying its a fluke for Rowan.

J.
 
She is back to having all of her bm's at night. She is distended and having formed stools again, idk if it is from the Flagyl or if we have adhesions forming again, or an obstruction. She is not distended enough to take her into the ER. I fear we will be having some tests done early in the week next week though. Sucks I just sent her back to school. Hoping it is a fluke. Right now her current count is still 5 BMs all of them at night she goes about 14 hours without going all day then from 7pm to 7am all night long. WTH? Very very frustrated.

She hasn't complained of back pain since that last episode. My DHs sister has RA, what do they do to test for it? I was actually thinking kidneys from the Flagyl but the clinic nurse said it doesn't effect the kidneys.

I hate being worried, I just want to be for a little while. Is that too much to ask. We haven't even been home a month yet. I am so depressed bc I am worried.
 
Because of her age, it'd be JRA. It is a diagnosis of exclusion when you are looking for the arthritis separate from other auto immune.

Cinncy children's has great info. I'll get you a link.

They look for all the typical inflammatory markers to be elevated and also check the rheumatoid factor and ANA along with several other antibodies. Plus pain, swelling an reduced range of motion. I believe it's 6 weeks or longer....can't remember.....it's been so long.

J.
 

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