Venting! Symptoms appearing.....

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jmckinley

jmckinley

Joined
May 30, 2012
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I'm sorry, I just have to growl for a minute! I warn you, this is a rambling mess!

Ryan is having some symptoms. It started with anxiety over All State tryouts. Then he had a sinus infection and had to take antibiotics. He has had blood in his stool (mostly bright red in water and on paper - fissure maybe), joint pain, pale and dry skin again, and lost 4 pounds! He did not have blood tonight. His mood is terrible and I am walking on eggshells. Today, someone stole his ipod at school (he had it there for a class assignment, not a usual thing to take to school). Where I suppose I would have gotten angry, I really had to reign it in and keep it cool because Ryan could have escalated to very upset pretty quickly. Overall we are over it and filing a police report tomorrow. I just want to strangle the kid who took it, that's all...no big deal! :voodoo::voodoo:

I called the GI and he wants Ryan to see the IBD team next week. For those who remember my confrontation with this GI, you will understand why I feel like I am being shuffled, but I think another point of view is in order. Great except that Ryan has a big band competition THAT DAY and the IBD team only meets 2 times a month.

So, what I want to do is get them to order some blood work now to see if I have lost my mind and schedule him to see the team in 3 weeks. IS THIS CRAZY? I want to let him do his competition because it will just upset him if he misses it (which will make things worse). Anybody have kids on anxiety meds? Thinking hard about that one for real!

Our problems are MINOR in comparison to many, so thanks for letting me vent. I am just tired and thought we were finally getting a break from battle. I will stop now! Headed to get a glass of wine and the bag of chocolate chips!!
 
I don't think that is an out there request. Does his disease activity show up in his blood work? If not, then may a fecal calprotectin too, that way when you arrive at the appointment with the IBD team they will have some labs to help assess Ryan and in the mean time if things are trending downward you could go with a liquid diet.

I understand what you mean about missing the competition, C can be the same way. You just feel for them because CD takes away so much and when you aren't certain things are going downhill you hate to cart them off to the GI and them miss somehting.
 
the antibiotics may have aggrevated his stomach quite badly. It can feel as though your are going to implode and get the crankiness in full gear. Perhaps trying some probiotics to help his stomach?
 
His bloodwork is usually a good indicator of what's going on. It seemed crazy to me also for them to want the team to see him just based on my reports. You'd think they would want some bloods prior to make sure they aren't using up an appointment unnecessarily. That's kind of why I felt passed on to the next Dr by our GI. I will call them tomorrow. We can do labs locally or I can get the GP to order them.

I did make some gluten free muffins tonight and I think I will get some Boost. I am also putting a call in to his therapist to see if we could go back on the anxiety meds. If that was under control, I think we might be able to calm things down.
 
Mickey, that did occur to me that the antibiotics screwed everything up. He is on a probiotic. I could add yogurt or kefir to increase the probiotic level. Can you take too much probiotic?
 
Keep us updated and I hope things are just wonky from the crud and that he improves soon. Good luck from over here in Georgia for the upcoming band competitions!!!
 
No, we have seen the poster in the office, last year I asked about it but when I brought it up to him it was just too soon after dx and he wouldn't consider it, this year it hasn't come up, by the time I saw it mentioned on here by someone I figured it was too late for apps.
 
I do not think you can have too much yogurt, but I do know the doc told me, during bad periods I can increase my probiotic to 5, but increase slowly over 2 weeks. I had bad reaction to antibiotic last year (stomach swelled, thought head would explode, body implode, nasty...) anway doc said to go up to 2 a day, then 2 days later increase to 3...up to five for a few days and then back down. If I have days where extra bloated, etc. I will add another without trouble. You will know if you have too much if you get a little cramping, and generally will feel it is too much. Your son truly needs the probiotics if he takes antibiotics. There have been studies that have shown amazing turnabout with probiotics. I take them daily and will not miss them (learned hard way) and also take digestive enzymes with most meals. Keep reading about 80% of your immune system in stomach and you will realize fix stomach, fix troubles....patience is a virtue...teenage years can be very stressful and teenagers can internalize...thus holding tension in the stomach...he can turn it around...good luck!
 
JM, Im so sorry first off that Ryan is having symptoms :(

I will just tell you our experiences...
If you have been following my Cimzia thread then you know Gab has been having issues as well.
Anyhow, my point is, our GI requested us to come in as well without ordering bloodwork in advance.
I was also thinking the same as you that he could have ordered them to be done locally and save us a trip.
However, once we got there I did realize that he ordered so many more blood tests to be done than he ever would have had he faxed an order for us to be be done at home; which basically would have consisted of a CBC and a liver profile and possibly a CRP.
So, in my opinion that was a bonus of having to actually have to physically show up to the office. :)

As far as anxiety/depression...
Hmmmm....I really wasn't going to post anything regarding this here but Gab knows I post here, so hopefully she will be ok with it :ack:
In response to your question...YES , Gab is on anxiety medication.
She has been on it on and off for 3 ish years; and now she is on a regular med every day to try and keep the anxiety under control.
There is no shame in that !
The reason I said I wasn't going to post is because Gab is an (adult) now and I try and protect her privacy to some extent :)
However, I just want you to know that anxiety can mimic "sick" symptoms, and cause problems all its own.
Am I saying that it's anxiety and not CD? NO !
I am just saying, it causes health problems as well. :heart:

Maybe try and talk him into making it to this GI appt. I understand that band is important...but so is his health. That is always what I try and remind Gab of..
They have been dealt a raw deal, but it is their deal and they can't let it over come them.
It will interfere in band, school, work, relationships..etc...but it doesn't have to own them or stop them; and we will be there every step of the way to support them through it.

Ok, enough of my soap box LOL.
my opinion is to keep the appointment and see what the GI has to say :heart:

OH, and NEVER apologize, nor underestimate the importance of your "vent" or "worries" here...we're all in this together ! :hug:
 
J - I'm so sorry to hear Ryan is feeling poorly again. I hope you can get it all figured out soon. :(
 
Sorry to hear things aren't going too well. It is soo frustrating when you can only get an appointment on a day that your kids have something they really want to do. We've had that a couple times! Not sure about the probiotics, I am always worried it will upset the stomach if given too much, so I stuck to a bio-yogurt when Andrew was on antibiotics rather than a pill.
Unfortunately there will never be a right or wrong answer for taking the appt next week or waiting a couple weeks. He could be stable for 3 weeks or things could get worse - good luck with that decision.
Definitely worth discussing anxiety meds with the docs. I know over here there are quite a few herbal remedies that are quite gentle (a few drops in some water) but not sure if they would be enough to help.
 
Hey JMK: So sorry Ryan is feeling so badly. You have gotten great advice and encouraging to! Just wanted to send you my support.
 
I'm sorry Ryan isn't feeling well. I don't think its too much to ask them to do blood and make an appt in 3 weeks. Part of coping with this disease is to keep life as normal as possible right? So, if this competition is important to him I say let him go. Unless things change of course. I hope hes feeling better real soon.
 
Sorry Ryan's not been well! It all can feel like a tightrope sometimes, take the wrong step and :ack: And, why does it seem Murphy's Law always seems to apply!!!!

It's a tough call re delaying the apptmt, impossible to know what is the right thing :ymad:... Do you think you could sit down with Ryan and ask his opinion, explain that you'll make the final decision BUT you'd like his input and that it's important that he gives you 'mature' input?

Explain your worries about delaying the apptmt, also explain that you understand the band competition is important but remind him, if he does recognize in himself that his symptoms are worsening, there will be other band competitions. Ask him to really think about it, to consider how he is feeling now compared to past symptoms and what he thinks should be done. Maybe his input will help you decide...

I know you're worried about his symptoms (I would be too :(), it's so hard to know when you can afford to wait... :ymad: just hugs :ghug: :ghug:

I'm drawing a total blank here... does he supplement with shakes? If you decide to delay the apptmt, perhaps compromise with him that he will drink a couple of shakes per day to make sure he's getting as much nutrition as possible (and holding his weight).

:ghug: :ghug:
 
Yes, second about getting his opinion. It can be surprising (well at least to me) how mature they can be and how well they know their body.
Yes unfortunately they will miss somethings, but he could have to miss a competition for any number of things not related to Crohn's. I try and tell Jack that his health comes first and it would be better to miss one thing and get things under control then to miss a bunch of stuff because we didn't do that one thing.
Only you and Ryan can decide if he can wait 3 weeks or not. Hope he is feeling better soon regardless
 
Just a thought...doc appointment will be on a weekday right? Band competition after school right? Can you try to get that appointment as early as possible and drive him to the competition? I remember our competitions were hours long and sometimes our band would go on until 9 at night. Would it be a possibility to meet up with the band later...I mean I am sure you have absolutely nothing else to do than drive all over Alabama all day and even if you did, I know you and know you would stop at nothing to make your little guy happy....puppy ring a bell?
 
Thanks everybody for the support and the different points of view! It's so hard to see the possibilities when you're in your zone!

Ryan is feeling better...2 days and no blood. Maybe it was a gut reaction to the antibiotics and it is calming down. Mentally, he seems better too. The fact that we handled the ipod theft very calmly helped and he is loving our new church, so he is "up" right now. I will talk to him tomorrow about how he feels and if he wants to wait. I think you are right that he can be a better judge of how he feels. He needs to be in on the decision.

If he decides to wait, I will definitely start back on the shakes. That should help get some weight back on. I have also called the therapist that he sees to get an appointment to discuss anxiety meds. I think that would definitely help and I see nothing at all wrong with it. It was great before. Bless his heart, he got his Momma's nerves!

As for the ipod, I filed a police report although the cop just laughed like I'd never see that thing again. I never thought I would, but just in case.....

CIC, the band thing is during school at the University, so it's an either/or decision. But you're right, I've done crazier things in the name of love and I've got 12 pounds of peeing/pooping/playing fur to prove it! Ryan loves that mutt!
 
So glad to hear that Ryan has had two good days without blood. Sounds like you have a good plan in place.

Sorry about the ipod. That really stinks. :(
 
I would ask GI about waiting. We had something similar and I asked the GI if it could wait and he sent us in for blood work that day and said depending on the results we could wait two weeks. The labs were bad enough that we could not.

We also considered anxiety meds for our son. He had one really difficult week but he was able to pull himself out of it and so we choose not to go that route. Sounds like Ryan has been able to do that too. Always nice to avoid one more med!!

Hope all goes well and he is able to go to his competition!
 
Glad Ryan's had a good couple of days. Hopefully it was just a reaction to the antibiotics.

Sorry about the ipad. My 7th grader has a school-issued Nook and I stress about that thing being lost or stolen. Next year my oldest will have a school-issued ipad. Not looking forward to that (of course he is though, and it means no textbooks to lug back and forth!!)

I know appointments are hard to get, but I think I would see what I could do to reschedule. Is this appointment with Dr. D? He has reschedule us a few times and never seems concerned about putting it off a couple of weeks.

Hope Ryan continues to feel good!!
 
Glad he is feeling better.
Docs usually don't want them seen by a team unless something they have been seeing and told makes them want to see themselves .(red flags)

There probably are a few things that were happening before your latest report in that help them make this decision.
Quite honestly if your doc feels its important enough to pull in more than one doc then he should probably just go.
They are trained and experienced enough to look for trends that you may not see or think of.
He is obviously having issues all be it hit or miss but issues just the same.
I think it would be easier if you had a better relationship with your doc .

A lot of things about this disease are horrible
But avoiding a consult because you are not convinced there is something wrong and putting fun things above health concerns is probably not something that you want to teach your son.
Listening to his body is great . Knowing when to trust his doctors is even better .
Everyone of us wants to believe what we are seeing " is just a fluke "
Or "not that bad".
But most of the time it is - just the nature of the beast.
 
So another day, no blood! And Ryan is back up to 112 lbs. I am really beginning to think it was the bug/antibiotics/etc.... I do have a call into the GI nurse to see if what they would prefer to do given the current situation. Called yesterday, no return yet. I will call again tomorrow. No call from the therapist either come to think of it!

Tink, I heard your schools were very tech oriented. I agree that it's worrisome, but I would love to avoid the books. Ryan has a few classes that give him the option to get an e-book, but he can only look at it at home. They have a class set of books. Honestly, nooks have to cost less than all those books!!! I have bought a home set before because the school didn't have extra, they are expensive!!! ...and you are right, Dr D is usually very accomodating about waiting. He has had some new concerns about our situation though ever since the remicade reaction. I guess that is weighing on his mind to want him seen by the team.

THANK YOU EVERYONE!! I will sure keep everything in mind! It might be possible to do both, but very hard and tiring on Ryan.
 
That is great news on No Blood again and back up to 112! Has his mood improved? C's seems to ne going back down hill, he was very low mood this evening and clingy which is so so rare at his age. Hope the GI calls tomorrow!
 
Yeah for another good day!! Hope you hear from the doctor today and can somehow work it out so Ryan doesn't miss the band competition.
 
Good to hear it seems to have been the 'bug'!!! :D

Clash, sorry to hear C seems to be going downhill! :( Hope he seems a bit better this morning
 
Clash, Ryan's mood has improved. Sorry C is having so much trouble.

Ryan seems to be doing much better. I cancelled the appointment, will call to reschedule. Ryan went through with the concert. Putting a pic of him in his tux in my album! So grown up...oh my! He did however have loose stool and blood Wednesday night after the concert. Nerves I think. I will keep a watch to make sure it was a fluke. No change in mood or weight though. I think he is just a little sensitive to stress. Of course, no call back from the therapist on the anxiety meds! Dr's and car salesmen are the worst at returning calls!
 
Thanks! It's so exciting and scary at the same time that he is getting older. I love watching him turn into such a wonderful young man, but I sure miss my "baby"! Just thankful that he is feeling well and found something that makes him so happy!
 
Great pictures!!! I hadn't seen the older one either! :D

Yep, right there with you missing our 'babies'. :cry:
 

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