Little Farm Girl and Colitis

Yep
Pred and EN would cover it all.
Another thing to remember -
Microscopic colitis or Ibd found in adults is different from finding it in a child.
The younger the child at dx the more likely the inflammatory pattern will change ( grow in severity )
Most kids go from inflammation to fistulas / strictures in the span of 10 years ( at least on the old drugs pred and 6-mp - no one know what course biologics will do).
So if your are microscopic now odds are not in your favor to stay microscopic even with treatment.
Case in point DS second scope last June visually showed inflammation so...
Expect changes .....

We love to hate pred here as well but ... It help heal DS so..

I understand the wanting to know why but like MLP said, if ya gotta have prednisone ya gotta have some prednisone - even with EN.

We've been there done that not only with crohns but early in the arthritis days.

J.

slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
Hows Grace doing today? xx

Suzy,
Yes, the TI can be seen on a colonoscopy. I think that's as far as they can go. Both of my son's scopes had photos and biopsies of that area and yes, inflammation there too.


Checking in on you FW! I know you need another couch DR, but I agree with the EN plus prednisone. The faster you get the inflammation under control, the better. We all hate prednisone!


(((HUGS)))

Suzysu - just a guess on my part but if there was inflammation leading to the TI, perhaps the scope couldn't go beyond the inflammation??

FW - I hope Grace is feeling better!!! How is she managing with the EN?

That's a good thought Tess.

Suzysu said:

slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
Hows Grace doing today? xx

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Suzysu dear I'm going to hand that question over to Dusty or some one that is in the "know".:shifty: How's Freddy?:heart:

I'm not going to withhold pred from Grace. I might hate drugs in gereral:voodoo:.
But they do have their place. :kiss: I still hate it :voodoo::voodoo:and will stomps my feet like a kid:wink: but I'll do what's best for Grace.:heart:

I called the GI nurse and update her. I guess the nurse did also. She told them that Grace was/is more pale, increasing joint pains, eye pains, belly pains and lethargy starting to worsen again. I guess when a nurse tells them then they take it seriously.:voodoo: They never called back. :voodoo:I guess I'll be calling and nagging tomorrow.:voodoo: I feel the stabbie kind of mood today.
Between Grace's pains causing sleepless night, tax season and my dear most beloved Grandpa in in ICU, I feel like a stabbie:voodoo::voodoo::voodoo:

Good night y'all.:kiss:

Wow Farmwife! I am so sorry things are piling up on you. I will certainly keep you in my prayers. I don't doubt for one second that you will take that rolling pin and straighten somebody out! I hope you get a call back tomorrow and Grace gets better soon. I hope you have a restful night!

Wishing you guys a restful night and sending hugs!

Hoping you are sound asleep enjoying a peaceful night. Haven't had a lot of time to post lately but know that you and princess Grace and the rest of your family are in my prayers. Hope grandpa is okay. We just moved my grandmother into a home on Friday, so I've been helping my mother and telling her not to feel guilty (grandma has lived with them and they have taken care of her for the last 8 years)

oh no, poor Grace - From a veterinary point of view I hate using pred and avoid it if I can - However it can give great relief and I think when youv'e tried a few other things and there are still inflammatory problems then you have no choice - and as I said it really can make a world of difference (plus it's not necessarily forever - she may just need a nudge in the right direction and a course of pred combined with the EN may help her no end).
I will be thinking of your Grandpa also at what must me a very difficult time for all of you.
Sending big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
PS - dont worry about my TI question! I had wanted to ask it a few days ago and just thought of it again yesterday - was a bit random and really not important!!!!

Suzysu - not sure about the TI question but when our doc was going over results of scope he said and I quote, "I was able to get to th TI which is good and there was no inflammation in what I could see of the TI".

So from what he said it sounds like he doesn't always get a look at the TI. But of course I am no expert. My daughter also had severe inflammation in her entire colon so that wouls also support Tess's theory.

So sorry to hear Grace is getting worse. It is horrible sitting round waiting for the phone to ring, hoping someone will help. Hope they ring soon. Hope your Grandpa is ok and gets out of ICU.

Suzysu said:

slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
Hows Grace doing today? xx

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On Danny's first colonoscopy the TI was not visualized either. I asked the GI and he said sometimes it is just to hard to get to. His second colonoscopy was dnoe by a different GI, and since he really wanted to make sure the TI was accessed, he brought in a second GI in case he could not get to it ... but he did. So ... I do not think it is terribly uncommon to NOT reach it. Danny's TI was normal on his second colonoscopy.

I was at the hospital all day with my Grandpa. He's doing better!:dance:
The social worker called to give my hubby an update on the special insurance for Grace. The nice lady told my hubby, now that Grace has been dx with IBD and EOS she will get this insurance. WHAT?????? HELLO???????? WHAT???????? When did it go from Colitis to IBD and EOS????? :eek2:

I will be calling tomorrow.

The GI nurse NEVER called again and Grace has some of her worst pains yet. She struggled to get four cartons of Splash in her tube today. She kept saying she was full and it hurt. I'm ready for the pred if it helps.:hug:

Poor princess!!! I'm so sorry she's still in pain - you must also be so frustrated, worried, tired! :ghug: :ghug: :ghug:

Is it possible to change formulas? Perhaps she's having problems with that particular formula?? I don't know if this is adviseable... just a thought. If the pains don't improve, might be worth asking the doctor. Is the formula cold or at room temperature? Cold formula may also cause tummy ache. Also, can you give her some while she's sleeping? It might be easier for her to tolerate and you wouldn't have to worry about giving her so much during the day. But, if you do give it to her at night, I would try to elevate her a bit to reduce any reflux.

Glad to hear your grandpas doing better!!

Second the cold in a tube - room temp for tubing
Cold for drinking .
She may need unflavored elecare or plain neocate
Alot of egid kids can not. Tolerate the eo28 splash btw.
99% can tolerate neocate or elecare .
Unless they have a lot more issues going on
Hugs

Dx has been officially changed to..........................

IBD and Eosinophilic Disease

At work
Join www.kidswithfoodallergies.org
There is a forum for egid kids read a d read
Call Cincy today
Cced program is needed ASAP as well as ibd clinc
Read apfed
Www.apfed.org

I'm sorry FW -- I'm on kids with food allergies, too. Haven't visited in a long time but the help was invaluable when Gracie has her anaphylactic reaction and was diagnosed with her allergies. It is a really great group -- like here. I sure hope you can get Grace the help she needs quickly!

Probably bc colitis isn't really a UC or Crohns diagnosis. It is just general IBD at this point glad that you got the insurance though. Really glad for her too. :wink:

Hugs Farmwife! I am sorry, but I am glad you have a diagnosis. I hope you get to Cinci and get a great plan in place for Grace very soon!

Suzysu said:

slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
Hows Grace doing today? xx

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@Suzysu:

The Terminal Ileum is literally the end of the end of ileum. It is the area where the small bowel connects the large bowel via the ileocaecal valve and the caecum.

During a colonoscopy it is normal procedure to progress the scope through the ileocaecal valve and into the terminal ileum/ileum. It will only reach a small way into the ileum.

The terminology they have used could mean one of two things -

1. They did not progress through the ileocaecal valve for no other reason than they decided not to.

or

2. They were unable to progress the scope through the valve due to inflammation. Sometimes a doctor will not push through inflammation as the tissue is very fragile when it swollen and inflamed and that increases the chances of perforation.

Was there inflammation at the valve?

Dusty. xxx

Sorry I've not been on much - I am not recieveing my email alerts!! - I thought it had gone a bit quiet!!

FW - How's your Grampa today?, and How's Grace - are they thinking of changing formula or maybe starting pred? I hope she gets some relief soon xxxx

Thanks so much everyone for answering my TI question - All of Freddy's scope was normal but it just said that the TI was not visualised and I just wondered if it were possible that he could only have inflammation at the TI or the middle part of intestine that they cant see - its just he passes so much mucus (just mucus no poo) sometimes I find it hard to believe that there isn't some inflammation somewhere - There was a few weeks between deciding to do the scopes and doing them and although he was certainly not 100% he was a bit better than he had been.

It is possible to have inflammation at the TI only.

Both of my kids have ileitis so their disease is isolated to the ileum and so did not affect the valve or the large bowel. It is also possible to have disease isolated further up the GI tract as well.

Dusty. xxx