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Much Ado About Nothing! eh!

Oh no--are you being tested for IBD too, or was the test for something else?
 
Sascot, I hope everything is ok. I must have missed the thread where you were having tests. Hope you get to feeling better soon.
 

Tesscorm

Moderator
Staff member
Wish you were feeling better. :( I hope the elevated FC leads to some answers and, hopefully, to something that can be quickly treated. :ghug:
 
Sascot: What are your symptoms? FC in older adults (and I say that with love) can be from a number of causes that we usually don't even consider with the kids...I hope it is one of those easy fixes. Keep us posted!
 
Thanks. I had to take 4 strong antibiotics last year May/June and it really messed up my stomach. It came and went for a while but the pain and nausea is getting worse. I assumed IBS, but the GP sent the calprotectin away just in case. Who knew it would show anything. Not a high reading but enough for them to tell me to come in
Crohnsinct - it's bad nausea on and off, tummy just feels 'off' and sometimes like a blowtorch is burning my intestines plus random bad pains that last a while then disappear completely. Believe me I am feeling much older :ysmile: these days
 

Maya142

Moderator
Staff member
Sascot - I remember you saying at some point you were going to be tested for AS? Did that ever happen? People with AS can have higher FCs and often have gut inflammation. Just something to look into if you still have joint pain.
 
They never came to any conclusion about the joints, the rheumatologist just sent me off. Joints have actually been fine since giving up gluten
 
Yes, tested last year and again a couple weeks ago. The regular stool test for c diff and bacterial infection was negative
 
Sascot, I'm sorry you are dealing with this. Your description of the pain was so vivid and horrible.

We really don't need anyone else with issues around here, so I've decided this needs to be something very easy diagnose and address.

I hope this is behind you very soon.
 
As of this morning, my 11 week old puppy is on Flagyl. The vet was starting to give me the run down on the med and I stopped her and told her we're good (and why). Let's hope tonight we're not running outside every hour for diarrhea!
 

Tesscorm

Moderator
Staff member
We have two dogs... between the dogs, my husband's IBS and Stephen's crohns... poop - size, frequency, texture, colour, etc. is a very normal discussion in our house! :lol: It's such a typical conversation at home, it's discussed as easily as the weather but I have seen some odd looks on visitors (ie daughter's bf)! :rof:
 

CarolinAlaska

Holding It Together
Jaedyn has been so descriptive about her poop on at least one occasion that I think she may have shocked her GI!! It certainly took her off-guard. Not an easy task I'm sure!
 
Waiting for FCP results getting a little punchy. Here is a little diddy for you. Sung to the tune of "Oh Where Oh Where Has My Little Dog Gone?"

Oh where, oh where
Is my fecal calpro?
Oh where, oh where did it go?
My patience is short
Is has been so long
Oh where, oh where can it be?
I hope it went down
I should check with nurse White
To see what she could see
Or shut my mouth
and check the portal website
I wonder what could it be
 
Hi no your not lol.. i had a change.. was mandyk.. well still am really haha.. i thought id have a change ,they say its as good as a rest but im not convinced 😃
 

my little penguin

Moderator
Staff member
Decided today that crohns is the gift that keeps on giving

Unlike say asthma
You get a dx
Get a med
Maybe have a flare every once in a great while (5-10 years )
But only affects the lungs

Crohns should not be defined as a disease of the gut
At all
It truly is a systemic disease
That is the gift that just keeps on giving
 
A local grocery store was having really good sales this week. The organic butter that's normally $7.50 was $3.50; the super creamy, high-calorie ice cream that E eats every night was $3 instead of $6; the Larabars that she eats for snack at school every day were $1. So I bought 12 pounds of butter, 40 pints of ice cream, and 64 larabars. I must have had 70 billion calories in my cart. :redface: The lady behind me in line asked if I had a restaurant. :ylol:

E is up to 108 pounds!
 

Tesscorm

Moderator
Staff member
Funny story I thought I'd share :D

We were walking our doberman, Mika (about 50 pounds) when, suddenly, from around the corner, a fluffy white 10 pound Pomeranian came charging at her! Full of piss and vinegar, barking, growling, actually took a small bite at Mika's leg. Happened so suddenly, other an a quick yelp, Mika didn't have a chance to react before hubby reached down and picked her up. Took a minute before the Pomeranian's owners came running but, what a sight... 6' man holding his 50 lb Doberman, high in his arms, while a barking, growling fluffy white Pomeranian kept them pinned to the wall! LMAO Hubbysaid it happened so fast, his first thought was 'this isn't going to end well!' and scooped up Mika!

I wish I'd thought to take a picture! :lol:
 
So weird things going in with the Hubby.

Last Monday he started with low grade fevers and body/joint aches. No other sympyims. We figured it was viral.

Thursday, we went to urgent care. Still only fevers and body aches. Fevers spiking 103. Negative flu test, CBC looked good white count low normal, nothing in the labs to indicate viral illness (monocytes lymphocytes normal) Doc gave a z-pack.

So he's been doing Tylenol then motrin to get fever down but would only come down to 100-101. Then yesterday fever got 103 and nothing would bring it down so went to ER. They couldn't give meds because of all the fever reducing meds he had taken so 2 bags of fluids.

They did blood cultures to send off and all the basic. Flu test still negative and CBC looks good.

Doc ran a course of vanco (just in case?). And said to see GP and possibly rheumatologist because the only thing he can come up with is something rheumatic like sjorens or lupus (doest really fit either).

99.9 when we left Hospital. 101.9 when we got home. 102.9 when we woke up. Doc also said (when I asked at what point should I bring him back if fever spikes over weekend and can't get down) take a cool bath fevers aren't fatal.

That's all we got, any gurus have suggestions of tests? I'm wondering about tick borne illness.
 

Maya142

Moderator
Staff member
Fever seems kind of high for SpA. We have low grade fever here with SpA -- between 99.0 and 100.2 usually. Doesn't get higher than 100.4 F ever.

It could be Lupus though... Seeing a rheumatologist might help.
 
Yeah I don't know what to think. We have a new puppy but it's on flea and tick med, he works outside with the phone company. He's pulled two ticks off of him from work and there was a knot with one of them. But that was in May and the end of July.

I guess we'll go to the GP tomorrow then go from there with rheumatologist and infectious disease.

I just don't know what to think.
 
Yes they've done it twice. So far everything they've tested has come back normal.

Today the highest his fever has been is 102.7. This is the 6th or 7th day. His first dose today which was Tylenol and motrin was the only time he didn't have fever. Since then it been Tylenol then motrin and the fever stays about 101 or 102.
 
Okay went to the GP today. He ran more blood work. He said we'd wait for the cultures to get back. He hopes it's a self limiting viral illness but if hubby has 2 more days of fever then he sending him to an infectious disease specialist. Still running fevers today but didn't start til after lunch.
 
Clash,
I am so sorry hear. Have had limited reception the last two weeks. I agree that this sounds like Lyme disease. Please keep us posted.
 
Still having fevers but the fevers aren't 24/7 anymore nor are they getting as high. The past two days he is fever free til about 12 or 1 then the fever starts climbing. Where he was spiking 103 it is now around 100. Can be controlled with Tylenol and advice whereas in the beginning neither would touch it. Overnight, the fever goes up and he sweats it off.

I can tell he feels a bit better, less lethargic and more animated.
 
We're to call the GP on Friday is the fevers aren't completely gone then he's going to give us the names of some colleagues in infectious disease, one in a med size city an hour away and the other in ATL. So, we'll choose and make an appt.

Oh he still really thinks it's viral and is fizzling out now since fevers are no longer constant and not spiking as high.
 

Tesscorm

Moderator
Staff member
I'm glad he's beginning to feel better. Hopefully, his GP is right and this will run it's course and be finished! :ghug:
 
Hey guys fever broke Thursday and hasn't occurred since. GP says more than likely viral and we'll probably never know what exactly it was. Still, he's waiting on another call about the blood cultures and if any thing has shown up in them. It was negative after 2 or 3 days but that was early he said.

So fevers, body aches and joint pa8n are completely gone. They lasted 14 days.
 
Yeah, I was really starting to get nervous but counting Thursday we've had 4 fever free wake ups! I'm so thankful! I haven't felt completely comfortable until this morning. But it does seem whatever it was it has passed.
 
I have to share a funny!

Grace and I were in Wal-Mart.
We were passing thru the aisle that had the laxatives:rolleyes:
An older couple was arguing over which stool softness the husband had used last.
So Grace:yfaint:
Takes it upon herself to walk over and told the man about a wonderful product called miralax. :ylol:

Her advice to him had the whole aisle (about 20 people at this point:facepalm: ) in laughter.

She said. .....
Mix well with a cold beverage.
Drink fast because you'll hate if you don't.
It might take days to work but when it does you should stay near the bathroom.:awe:
Or bring a change of clothes:eek:

The older couple said thank you and looked at me to say something but I shrugged my shoulders, smiled and left.
Sometimes the genius of an 8 year old need no reply! :thumleft:
 
Got this on my twitter feed from an IBD Dietician:

7yr old: Mum, what happens if you eat lots of tinsel?
Me: probably emergency surgery to prevent obstruction somewhere in your digestive system.
7yr old: *blank face* *small voice* you get tinselitis
 
Sorry guys but after all these years, the thought of someone watching a Crohn's mama and our antics still cracks me up. Today, T had labs which of course included calpro. We got the sample last night but I didn't have a jar so I grabbed a Tupperware from my drawer. My oldest daughter with her most disgusted face and voice said, "you aren't going to use THAT are you?". I said, "relax! I'll clean it!". LOL mean mommy.

Anyway, took frozen sample to lab in Tupperware, along with plastic spoon and paper towel to wrap said spoon in afterward.

While T was in the lab getting her blood drawn, I ran outside with the jar and sat in my car transferring the frozen poop into the little jar. BUT frozen sample was too wide for jar so I had to saw the poop in half and shove it into the jar. I left the Tupperware and spoon carefully in the car and ran the sample in. On my way out, I found the dumpsters and disposed of my home spun lab supplies.

I wonder what the person parked next to me would have thought had they seen that.
 
WARNING RANT AHEAD

Today was T's annual 504 meeting at school. Counselor asks T how she is feeling. T said, "good". Even though she on and off has pain, stomach distress and nausea. But I get it, no need to go into details...not missing school, competing school work, straight A's, so basically good.

We were going through each of the accommodations and the counselor asks T, "have you ever used this one" for each and T answers, "no". So the counselor says and I swear she said this, "Oh o.k. great so how about we take this one out". And Pilgrim thought her head almost exploded? I think my head spun around three times before it exploded! But I calmed myself down and figured maybe she just doesn't know the unpredictable nature of IBD and decided to school her...nicely....well as nicely as I could...and I swear she said, "that's nice but I am going to take this out and if you find a need in the future to put it back in we can".

ARE YOU SERIOUS?

We are talking things like self monitoring for gym (which she has NEVER done because she is a jock and LOVES gym). I tried to explain that taking it out means if she ever needs it she has to suck it up and participate until a time when we can get an appointment to ask for it to be put back in. Which can take a week or two (3000 kids in the high school and only 5 counselors so do the math). What sick kid needs that pressure?

Also tried to take out self monitor for assignments...sure cuz if the kid is in the bathroom writhing on the floor all night they should have to worry about going to school without their assignment and hope to heck that they can get a 504 appointment and a new document sent to the teacher same day.

Yeah, I left the office refusing to sign any changes to her 504 and not hungry for lunch because I just ate a very green and uncooperative counselor!

The kid has never, ever taken advantage of one single accommodation. I would venture to say that most kids on here are loathe to take advantage of their accommodations. They are some of the toughest kids anyone will ever meet. So why take them out. I could see if you felt they were abusing them but really? And yes, I would like to believe that most teachers are decent, caring humans and would entertain a conversation with a student independent of any 504 plan but we all know there is always one in the crowd. Plus T's school is ginormous and the teachers don't really get to know the kids all that well and there is a good sized population there who are always working the angles or just downright irresponsible so I wouldn't even blame them if they didn't quite buy an "I'm sick" story without an actual 504.

Just leave the 504 alone...thanks anyway! I wanna go back to my small town in CT.
 
Rant away, CIC--that sounds like a horrible meeting. T's counselor clearly doesn't understand IBD. Maybe you can share some more info with her?
 
Oh the best was when we got to assignments. It said something like, T has the right to adjust assignments to lessen her work load when not feeling well. So for instance if it is math do only half the problems or she even has the right to skip assignments. Again she has NEVER taken advantage of this. Well the guidance counselor agreed to leave it in but then said, "we usually put in there that you have to give advance notice so we will put that in". ABSOLUTELY NOT! What part of Crohn's is unpredictable do you not understand?!
 
crohnsinct,
I am sure sorry to hear you are dealing with this frustration.
When my now adult son was a young child, he was so resilient like T. He loves sports and he played at the most competitive levels that he could. I heard teachers and other parents sometimes complain about the fact that he "played in the game, but was not playing at the practice". It was the coaches and other kids who came to his defence because they were the ones who had seen him clutching his belly and laying on the bench while 'watching' the practice rather than participating in it. (And for more evidence, he had that ghostly white complexion with the big black circles around his eyes.) But as soon as he felt better he was zipping around the court, rink and field. This resiliency has really helped him with long-term schooling and playing at higher-level sports for the years that he was very healthy. Now he is ill again and the resiliency is helping him get through the long diagnostic process again while trying to work at a very intensive year-long internship that will shape his career. I don't know how these young ones do it--but they have no choice but to carry-on.

Keep up your superb advocacy for T. You are helping T learn what she will need to do for herself one day. In the meantime that counsellor had better watch out! :shifty:
 

my little penguin

Moderator
Staff member
Big hugs cic
That’s a tough one
In high school they try to pull as much as possible from the 504
At least we were told that
They even said in most cases they are always eliminating accommodations
That said they did feel Ds needed all of his accommodations plus a few more
 

Maya142

Moderator
Staff member
And yes, I would like to believe that most teachers are decent, caring humans and would entertain a conversation with a student independent of any 504 plan but we all know there is always one in the crowd. Plus T's school is ginormous and the teachers don't really get to know the kids all that well and there is a good sized population there who are always working the angles or just downright irresponsible so I wouldn't even blame them if they didn't quite buy an "I'm sick" story without an actual 504.
This is so true - and I say that as a teacher as well as a parent! You absolutely have to have 504 because there really is one tough teacher...often the gym teacher :yrollseyes: (which is just beyond ridiculous to me).

I would also say that 504s are important if your child is thinking about college -- even if you're expecting them to go to college, because they're 5 now. Most schools require a standardized test - the SAT or ACT. If your child does not have testing accommodations normally, College Board may refuse to accommodate them. Same with college - the Office of Disability Services at most schools will expect to see accommodations set up in high school, even if they weren't used regularly.

CollegeBoard also does not like to give kids extra time on exams unless there's a good reason (a learning difficulty, like ADHD or dyslexia or a physical reason). So it's good for them to see that specifically documented or explained. They refused to give extra time to my older daughter (though she got extra breaks, which was enough for her) but gave it to my younger one who had many more issues and more extensive 504 plan and a clear explanation for the accommodation (hand/wrist arthritis).

Anyway, my point is just that since getting accommodations is such a process, that you really have to set them up as early as possible - before a child flares, ideally.
 
MAYA - OMGOSH! Same here! College board denied O extra time or stop the clock testing and she was going to the bathroom like 4 times an hour. T doesn't have bathroom issues and she gets time and a half to take the test. WE didn't even request it the high school did!

The guidance counselor told T that if you get extended time and you finish early you still have to sit there until the time allotted is up. T was like, "No way, I'm out" and wanted to drop that but she is just a sophomore and I told here "No way, you never know what might happen in the future".
 

Maya142

Moderator
Staff member
The guidance counselor told T that if you get extended time and you finish early you still have to sit there until the time allotted is up. T was like, "No way, I'm out" and wanted to drop that but she is just a sophomore and I told here "No way, you never know what might happen in the future".
This is true for state testing in our state - M hated it. The state testing is pretty easy - it's like 9th grade math and English. So she most definitely did not need extra time. She actually had to get a letter to say in writing that she did not want to use her accommodations for this test and she wanted to test with her classmates - not with students who were getting 1.5x-2x the normal time.

I would agree with you - don't drop that accommodation if at all possible - you never know.

My daughter says she was allowed to leave early from AP exams (as soon as she was done) but she can't remember what was allowed for the SAT - she thinks she had to stay till everyone was done.

But she says she did NOT get extra time for the SAT (or PSAT), like I said above - she was denied but could have appealed. But she didn't really need it, thankfully, so she didn't appeal it.

I will have to check to see what she got - we should still have her letter from College Board.
 

Maya142

Moderator
Staff member
College board denied O extra time or stop the clock testing and she was going to the bathroom like 4 times an hour.
I'm really shocked to hear this - I can understand extra time because that they really do not like to give out. But extra breaks or stop-the-clock bathroom breaks?? That should be a no-brainer with IBD :eek:. I'm shocked - that was one accommodation we never got pushback for.

Poor O - she is incredibly tough. The SAT is hard enough without having to leave to go to the bathroom so much.
 

my little penguin

Moderator
Staff member
College boards won’t give accommodations unless you PROVE that you used /needed those same accommodations earlier in high school
We were told to have them added as early as 7th grade to cover for college boards later
 
E received a "stop the clock" accommodation from the College Board for bathroom breaks. The related accommodation on her 504 is that she is allowed to go the bathroom at any time during her classes.

Our only issue with this has been at the school level. When E took the PSAT last year as a sophomore, her school put her in a room with people with all different types of accommodations, and then everyone in the room was given extra time. She didn't know enough to question it, and it didn't matter in the end since sophomore year is just for practice. I've since read that the College Board will disqualify results for issues like this (receiving the wrong accommodations).

This year the PSAT results matter for National Merit scholarships, and E wasn't flaring at the time of the test, so she just asked to take the test in a regular room and that wasn't a problem.

The SAT is given at testing centers, rather than at the school, so I will be sure to check in with the center ahead of time to make sure that she is given the correct accommodations.

And I know I should be responsible and talk to her school about the accommodation issues just so that they are more careful about it in the future...
 

Maya142

Moderator
Staff member
504 does NOT transfer to college though
Helps some with office of disabilities but 504 is purely K-12
Not college at all
It does not transfer automatically or anything like that. I meant that it helps with the Office of Disabilities - it is easier to get accommodations if you can have a doctor say the child (and by child I mean young adult!) has had these accommodations for years and they have helped the child succeed, and very importantly, that the child still requires them in order to succeed.

Remember that college students are not always honest - both my daughters have known kids whom faked ADHD/dyslexia in order to get accommodations at school. My daughter even dated one guy who bragged about :eek: - she dumped him the day after he said that!!

Anyway, my point is that the Office of Disabilities does put you through a whole process to register so you can receive accommodations, for various reasons. They really do want to see "proof" that you need accommodations and that usually comes in the form of documentation from the doctor. But it does help to say you've had these accommodations in high school and they helped.
 

Maya142

Moderator
Staff member
The SAT is given at testing centers, rather than at the school, so I will be sure to check in with the center ahead of time to make sure that she is given the correct accommodations.

And I know I should be responsible and talk to her school about the accommodation issues just so that they are more careful about it in the future...
pdx, She will likely be in a room of kids with various accommodations for the SAT. Most kids will have extra time instead of extra breaks for stretching (for arthritis) or stop-the-clock bathroom breaks (for IBD). My daughter took the SAT 3 times and we were lucky that it was offered at our high school. Each time she got a teacher who knew her as the proctor, which made her feel better about asking for extra breaks (familiar faces make the experience less scary I think!).
 
The weirdest thing just happened. O's nurse came for infusion. Put the IV in and mixed the Entyvio. Took the bottle and went to fill the bag or some such nonsense and the bottle exploded in her hands! YIKES! That is a VERY expensive spill.

O is supposed to leave tomorrow so they are sending another supply overnight and her nurse will come as soon as it is delivered. Good thing Entyvio infusions at home are only an hour because this kids a plane to catch and the airport is 2 1/2 hours away!
 
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