Friday Update on Little Farm Girl

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Glad to finally read your update. I have been trying to get my little ones to bed for the past three hours and they keep coming out. I finally gave up and sat down to look at the forum. I am sorry you did not get more firm results. Like the others said hopefully the biopsies will give some more answers. Did they give an idea how long they will take? Hope Grace and you both have a restful night.
 
Checking in on you. Sorry the scope didn't show some visible answers. I hope the test results come back with answers! Rest up and give Grace some big hugs from us! So glad you finally had the scopes.
 
Hope you had a reasonable night with Grace. Glad it's all over - the preparation is horrible. Sorry you aren't any closer to finding out answers, although it is good they couldn't see active inflammation. When we went for scopes, they said they can only go down so far and up so far so there would be an area in the middle that they maybe couldn't get to that is causing the bleeding?
 
I can't imagine how horrible it is to know there is something profoundly wrong with your child's health and be unable to pinpoint the problem. I know you have no choice but to keep searching! Hugs to you all!!
 
Grace had a good night. Her leg was a bother but she went back to sleep.
She's happy this morning and playing.

So after a long sleepless night I decided perhaps it's best to move on and try to more actively search out other possibilities for her condition.

I hate the idea of MS but maybe. Mobilities issues, maybe? Some strange food allergies, maybe? Some weird syndrome, maybe. Who knows but answers have to be gotten.

Biopsies will be back in 7-10. I guess I'm not thinking they'll show anything.

Tesscorm I asked my hubby and he thought also it was 6. That's it! The GI never felt it was IBD so he might not have felt the need to take that many.



:heart:I hope y'all don't mind but I'll still be around and check in with y'all. What would crohnsinct do with out me. Poor thing would be lost!:heart:

I've said it before and I'll say it again.
This is a very special forum.
You all have been there for me and many others in our time of trials, hardships, frustrations and even the blessings.
Your kindness is the true strength of this forum.
David you should be very proud this forum. Your hard work and endless devotion to others is the greatest value this place has.

:heart:Our love and thanks from Farmwife and farmgirl!:heart:
 
Glad you all survived the trip to the big city and sorry there are still no clear cut answers. I believe I am right in saying that they cannot visualise the whole of the intestine with the scopes, so I guess it is possible that they just can't see the bit that is causing the problem - after Freddy's scopes they gave us a report that told us which bits they could see and which bits they couldn't - can you check with the GI?
Your food allergy adventures seem just like Freddy's take a food away he improves for a few weeks then gets worse again even though nothing has changed!
As eeryone else says just because it looks normal doesn't mean it is - just got to wait and see what the biopsies say - when is your follow up appointment? xxxx
 
Glad you at least got the pictures taken and you know more about what is not happening in the gut. I hope you find what answers you need quickly. We love you too Farmwife, you have been a great support to us as well! Hugs from downstate, who knows in the end I might become a Ohio State fan! :ywow:
 
PPS - I only seem to get to see a lot of the recent posts after I have posted so appologies if I have just repeated what everyone else has been saying!! xx
 
Thanks for the update. We all look forward ot the biopsy results. If they are negative, I'd want an MRE and/or pillcam just to finish out the major testing. Couldn't the black blood be coming from the small intestines (if the stomach appear normal)? Danny's last scopes they took ~21 biopsies ... several from every area (esophagus, stomach, duodenum, TI, cecum, tranverse colon, other colon (?), rectum). OF course they did not give us any answers either tho. Good luck!!
 
Fwife, as you know from V's thread...sm bowel can be a mess and scopes NORMAL, both grossly and histologically as V's always are.
She needs MRE or a pillcam. What if her sm bowel is wherein the problem lies as for V?
 
I was just reading over Johnny's biopsies report and there where ten areas listed but 3-5 samples from each area. Maybe that is what they did. I would think if they are going to go through the trouble of scoping they would cover their bases.
 
Has her blacken stools been tested for blood? I am just remembering back to Rowans coffee ground like stools and everyone kept saying blood but it turned out to be extreme constipation and her poop and not blood. Just courious if it was tested for blood. I don't want to make assumptions since I know all to well how weird it can be dealing with the blacked stools and cronic constipation.
 
I don't know how to type this.

The GI got the biopsies already. Inflammation in the TI and colon. We're starting EEN with a tube on Monday or Tuesday.


I feel like screaming. I feel like dancing. I feel like over eating. I feel like shaking my fit a the world and yell ...I told you so.

The GI is going to call it Colitis for now. He said he still wants to take his time and make sure the dx is right. He gave the name of two other diseases that it could be but he focused on IBD the most. No matter what, right now her dx is Colitis.



So, if you don't mind your STUCK with us for now.

BTW, the GI said sorry. He just didn't think a she would have this. I think that speaks a lot for him.


I'm starting a new thread called Farm Girl and Colitis. I t help me remember why all the info I need is.
 
Oh Farmwife! I hate to say welcome to the club but at least you have some kind of answer and can move towards making Grace feel better. Hope the EEN works wonders and she is soon pain free.
 
Farm Wife,
I am glad you have some answers but also sad at the same time. If you ever need to chat about the EN just let me know as we started our son Clark on it DEC 23rd. It's been a rough week but we are crossing our fingers that this will be what he needs to heal. Give little Grace a love from our family.:ghug:
 
Welcome to the club no one wants to be a part of. I also have mixed emotions for you, it is nice to have an answer but sucks it is a life long commitment at such a young age. I was there just over a years ago and I remember thinking omg how will I deal with this. I have learn its best to cross each bridge as I got to it. I think you already have a leg up compared to me at that time, your more well versed than I was at the initial diagnosis and you have an idea of all the different treatments out there.

I hope EN will help her... do they think you could achieve remission even though it is a colitis diagnosis. Obviously it is healthy for her, but will it reduce her symptoms? All questions I am sure you have asked.

Sorry :heart:

Take care and if you ever need me feel free to pm me anytime. Hugs
 

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