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Hope all goes well today! I will have to mention camp to Ryan. Maybe that would be a good place for Ryan and C to meet! Ryan expressed an interest last year in meeting other teens with IBD.


Glad the prep went smoothly. You just never know with that!
 
Doc just came in, procedures to start soon, went over what he's looking for and how that will determine treatment. Will update when I can.
 
Hope it all goes well. Good luck! I'm always paranoid about forgetting the chargers for all the electronic stuff we "have" to take with!
 
C is out of recovery
Colon looked good
GI was unable to get through ileocecal valve to see TI due to narrowing but did use forceps(?) to take some blind biopsies through valve in TI.
I asked was narrowing due to inflammation or scarring he said the MRE and biopsies would tell the tale as inflammation "lights up" MRE.
MRE is scheduled for tomorrow.
C is sleeping now and my mind is kinda numb and swirling.
 
Big Hug :hug: step one out of the way on to step two tomorrow so you can have all the information. I know like me you want it now, need a plan of action and it's so hard waiting.
 
Glad the scopes are behind you now, but hate to hear of the narrowing. Hope you get more definitive answers from the MRE.

Try to get some rest for yourself while C is resting. Take care!
 
Oh, his FC test came back also, the Doc gave me the results this morning when we first talked. He said that the level was 300, which isn't so bad, last flare it was 1200 or 1700(can't remember which).

Didn't MLP say FC test not as accurate in small bowel or was is the other way around?
 
Glad its all done!!! And, yes, try to get some rest too!!

FC is not as reliable for small bowel... I was told the same when I asked Stephen's GI to run the test.

Hugs... :ghug:
 
The numbers on fc are lower for small disease. Sarah has a high of 620. Her gi mention something about doing colonscopy and fc at the same time to see how they match for her.
 
Good news about the scopes!

I have heard to that the Fecal Cal is not a great predictor for small bowel, but that is where my sons disease is (and his stomach) and his came back a 586. Dr. said he wanted the number 400 or less so I think 300 regardless is a good number.

Did you run home and get that x box from the "cafeteria" yet?:ytongue:

Hope the MRE goes well tomorrow!!
 
Glad his scope is done.
Hope your mre is uneventful and they get biopsy results back quickly.
We have had them in a day and half when the doc knew we were coming back in for scope of kid # 2 - a day later :)

Was he able to get into the TI for his first scope or is that worse??
 
The first scope was not done by this GI but yes they were able to get through the IC valve and into the TI the first time he was scoped.

Neither time has he had colonic involvement, both times they have said the colon looked good.

His last flare we did an FC test and the level was either 1200 or 1700, I have it written in my notebook but don't have it with me so that was from his small bowel as well I assume since that FC test was between the two colonoscopies and both times the GIs said colon was pristine.

The GI really emphasized the narrowing at the IC valve, I'm wondering if we are dealing with scar tissue or both inflammation and scar tissue. They changed his diet from regular to soft.

He couldn't not pee earlier and his bladder was full and distended 894-901 ml(?), and they did a cath, my poor baby, it really sent him reeling about his illness and his spirits plummeted. They were only able to draw 630 off. He has since been able to go on his on and is much calmer.

Nurse said MRE first thing in the morning, he starts drinking icky stuff at 4am.
 
Good luck with the MRE. Hope it provides the answers the colonoscopy couldn't. Hope they come up with a good plan of action afterwards!
 
So 4 am rolled around and C was supposed to start drinking the icky stuff, 1 bottle an hour. I told him if it was too nasty or he didn't think he could get it down that he could do an ng tube. He took three sips and called his nurse and said can I have a tube!!!!

The tube went right down, nurse said he did great, he just drank the water and didn't gag or anything, so now the icky stuff is going down through the tube!
 
Hey guys I don't have results yet. Poor C vomited the ng tube up right before MRE. It really scared him because there were no nurses around and the tube hanging out of his mouth. MRE went well but long! Hope doc comes by soon.
 
Clash, we are all thinking of you both.
I wish these tests weren't a part of our childrens lives, but hopefully you will find out what needs to be done. let us know what you find out. hugs to you both
 
Doc just stopped by said the radiologist said great pics and we'll have results late afternoon or in the morning. Biopsies will be first of the week, I think he said over twenty biopsies.

This doc is in C's GI's group and covering the floor today, he said C's doc and he having been talking all day about C's case. Funny, though both have said the great news is his colon looks good. That is great and I'm happy about it but his colon hasn't been involved, wonder if they were expecting it to be this time?
 
Most likely it will be in the morning when we get the results. C has been really down today, I think he had it in his mind that he would have test then be discharged. I really have no idea what the plan is or when we should expect to go home, I don't want to get his hopes up and I would think the results of the MRE would determine the plan going forward but just have no idea what they have in mind right now. It has been a low day, the MRE really bothered C's tummy and it has been cramping ever since.

Thank you all so much for your thoughts, support and hugs, they have been a bright spot in all of this. I hope everyone is doing okay.
 
Poor you and C!!! :ghug: It's been a rough few days! :( Hopefully, it's all behind you and you can get going on the treatment and feeling better quickly!

Thinking of you! :hug:
 
Maybe once that fluid and gas gets out of his tummy he will feel better...
Is he still getting the yellow diarrhea? did they give you any ideas what they thought that might be?

No fun in the hospital, hope you both get to go home soon!!!

If I was closer, I would bring you some wine, or a strawberry Mar-go-rita. I can't believe you can get those at Walgreens.

take care and hope C gets something to lift his spirits.
 
Glad the tests are over and done with. Poor boy - don't blame him for being fed up! And you having to watch him suffer through all this. I remember Andrew's stomach being upset for a couple days both after the colonoscopy and the MRI. It soon settled though.
I hope they come see you asap so you can know what the next step is. Hope you get home soon.
 
I'm glad the ng tube went in nicely, but sorry it came out like it did. I'm sure it was frightening! I will be watching to see what results he gets.
 
Hope you are both doing okay!! Hopefully not too much longer before you get your results and you can go home.

:ghug:
 
So except for that small area at IC valve MRE looked good! They aren't sure if that area is inflammation or scar tissue still. In service GI and C's GI are in discussion. May get discharged today! They think it is antibodies awaiting HACA results. There are some other things that aren't quite worked out for me and I will post about it when I get a hold of the lap top.
 
I hope by now you're out of the hospital. I absolutely hate the part where nothing is happening, and you're not sure of why you're still there. I've suggested to our doctors in our GI group that it would be great if they would consider that these kids are parts of families that have lives to lead, and while of course our focus is on our kids getting better, the waiting and seeing can sometimes go for days and as we all know, time stands still in the hospital. I always preface everything I say to the docs with, "I really do appreciate everything you're doing for my child....but.." LOL I'm sure they think I'm a big pain in the butt and that I complain a lot. But I hate inefficiency, and there is way too much of it in the hospital.

Keep us posted on how he's doing!
 
Okay, I just have to laugh, a nice lady on the elevator with me was asking about why I was here and I told her my son had CD and she said "Oh my sister had that but she said she just stopped eating spicy foods and it went away, so if he eats right he'll be fine." I thanked her and we'll get right on that as soon as he IS eating.

So, we didn't get discharged today. So C is a little testy but hey so am I.

Quick question, the narrowing is where the IC valve is. The in service doc said he wasn't concerned about the narrowing so much since C wasn't experiencing obstruction type symptoms. But Hubby and I were talking and C used to eat us out of house and home like any teen boy, it didn't show up so much in weight gain but then about a month or two ago it changed it was like his eyes were bigger than his stomach. He would fix big plates but feel full fast and he would food would come back up in his mouth, not like projectile vomiting but just a bit. Could this be a symptom of the narrowing around the IC valve? I mean that is so far down at the end of the small bowel.

I hope it is antibodies and giving the remicade out of his system will take the joint pain away and starting humira will fix any other issues. Blood work has been normal and GI said FC wasn't that high at 300 and MRE looked really good so I'm worried the narrowing is going to be scar tissue and his low appetite will continue. I hope this HACA tests gives us clear answers!

Ok sorry so long and probably fairly incoherent rambling which I also apologize for but I blame is on hospitalitis!!
 
No real answers -hope they get the Haca results . I know DS took a week .
Prometheus lab takes three days from receipt of samples to fax back results .
 
Oh my gosh, after the last few days you have had? ... at least you can laugh about it!!!
so you just need to remove spicy food, why didnt we think of that?

quote
"I doubt you can understand the magnitude of the stupidity in your statement”

Hopefully someone will be able to answer your questions of scar tissue... at the IC valve area.
 
Oh Clash...bless you and C! I hope you get some real answers soon. Uncertainty is awful. What a trooper C has been. Keeping the wine chilled until you are home and we can pop a cork together online. Until then, try chocolate.

Many hugs!!!!
 
Haha!! Exactly Julie! Why didn't we think of that!! Was spicy food all along :rof:

It would be worth mentioning about him filling quickly and being a little sick!! Could be something.

Hope you get home today

X
 
Don't you just love well-intentioned advice?!?!? :lol:

Not sure about the narrowing either but I had the same thought when Stephen had those 2-3 nights of vomitting, d, etc. - that narrowing in the TI was causing food to 'back-up' and not flow through properly??? Our home nurse was over last week and she didn't think that was the case but... hmmm, I've sometimes found her knowledge of crohns to be a bit limited.

Do you know if the MRE mentioned any proximal dilation? In layman's terms (at least the way I understand it! :redface:), if there's a partial obstruction (or narrowing), the area just before the obstruction/narrowing will balloon out a bit as food is being held back... this link explains it a bit better.

http://www.learningradiology.com/archives06/COW 216-SBO/sbocorrect.htm

Hope C's feeling a bit better and you can go home!!
 
Thanks Tesscorm, I'll ask about the results and see what they say.

We are still here at the hospital. C's on fluids and they are monitoring intake/output. Nada going on other than that. Each day they say we may go home today then it doesnt happen.

C seems to be feeling a lot better, he jokes around, facetime with friends, all that is an improvement. Joint pain fluctuates between 4 and 6 but C refuses the pain med because he doesn't like the buzzy feeling. So we have been using heat pads, the joint pain is now limited to one knee, he says the other knee and his back ache but not to the level of the right knee.

Hope everyone is doing ok. Hope we go home soon. Please ignore any typos I'm on my mobile.
 
We're in the hospital too...for different reasons, albeit never a fun place to be that is for sure.

I will keep your son in my thoughts and hope he gets to go home soon.
 
Hey we finally made it home!!! So it was a whirlwind but here's what I got from it.

Colonoscopy/EGD all looked good except of right around the IC valve, which GI couldn't get through but with forceps and got over 20 blind biopsies. MRE looked good and there was good flow as the narrowing through IC valve and no proximal dialation(Thanks, Tesscorm!!) The biopsies came back today and I think that is part of the reason we got to go home. It seems and I may have this a little garbled but they were checking for the presence of granulomas at the IC valve because if there was narrowing and granulomas then that is something that is alot hard to treat and most often ends up requiring surgery. We are still waiting on the HACA antibodies test.

PA said C's appetite is suboptimal and he has a GI appt and weigh in scheduled for two weeks out if at that time he still is having weight issues then appetite enhancer and/or overnight ng tube will be added.

Thank you all for your thoughts, prayers and hugs!!! We are so glad to be home.

TracieD I hope your son's issues get worked out quickly and he is able to come home soon. I've had my gallbladder removed for supposed low percentage on the HIDA scan but the debate still rages if it was necessary. My husband had his removed for gall stones and it made all the difference in pain attacks right away!
 
If C is anything like Alex - simply being home will make him feel better :)
Glad he was released and I hope the test results come back good.
 
Yay for being home! I am glad that C is feeling better! Let us know when you're ready for that virtual cocktail hour!
 
So glad to hear he is home and that you all get to rest a bit from things while you wait on test results. I hope he gets his appetite back. The NG tube thing isn't easy... doable, but not as easy as it looks.
 
Woohoo :banana: Glad he's home... Hopefully, that, in itself, will help him feel better!!
 
So glad you're home!!

The IC valve is a ways away, but I wouldn't rule it out as the culprit for food coming back up. L's stricture was in his small intestine about three feet from his stomach and during the worst of his episodes he was vomiting daily. He'd feel full after only eating a couple of bites and a little while later we had the pleasure of seeing those bites in their regurgitated form. Sorry, too much info... I'm just thinking, that was three feet away, so theoretically...?

Is C typically nauseous after eating? Does he get reflux ever? Did they say if just using the forceps to get through may open things up a bit?

And on a slightly different note, am I the only mom who uses the fuzzy drug feeling as an anti-recreational drug campaign? Benadryl makes L feel "fuzzy" and he doesn't like it at all. I've told him recreational drugs multiply the fuzziness a billionfold. He said, "I'll just stick with Pentasa, Mom. And I take so many of those, why would I ever want to take anything else for fun?? That's dumb." Um, thanks Crohns??
 
Mehita said:
And on a slightly different note, am I the only mom who uses the fuzzy drug feeling as an anti-recreational drug campaign? Benadryl makes L feel "fuzzy" and he doesn't like it at all. I've told him recreational drugs multiply the fuzziness a billionfold. He said, "I'll just stick with Pentasa, Mom. And I take so many of those, why would I ever want to take anything else for fun?? That's dumb." Um, thanks Crohns??
Click to expand...

Yep me too!
 
Me too although C knows someone that has that very problem so I think that also plays a role in why he refuses pain meds.

He.does go through spells where he is nauseated after he eats I say spells because he only mentions in a certain time frame then I don't hear about it for awhile but then it was that way with joint pain too and when it got really bad he admitted it had hurt a long time before complaints. So who knows teens are an enigma!

There was a 15 year old boy two doors down from C at the hospital and his Mom and I talked. This boy had had an MRE and all looked good then two days later he started vomiting she rushed him to the ER and he had an obstruction due to narrowing exactly where C's is and had to have a emergency surgery. The Mom said for months he had the here and there complaint like C of feeling full fast and was losing weight bit he was so active in several sports she never thought CD. He had been on the same meda for 4 years and she thought all was well. Scary.
 
Last edited:
We are still waiting for the results to the HACA test. Hopefully, it will come in soon.

C seems to be eating okay and we have added shakes as well. He has gone from one bm every day or every other day to 3 bms so far today with mucus. Not sure what it means, eager to go over everything with his GI and get the results of all the tests to peruse myself. The in service GI and PA both led me to believe there weren't seeing inflammation(which would mean the Remi was kicking CD butt, woohoo) but I won't detailed info, pleeeze! HA!

C seems to be feeling okay he is still taking tylenol for joint pain but his spirits have improved although some of that can obviously be attributed to being home!

Spending most days just trying to catch up on all the school work he has missed, blech!
 
So, the day after we arrived home C was invited to a formal dance by a friend. It really cheered C up to be invited and to get back into the swing of things socially(and was a sweet gesture by the girl that asked him) but it is this Saturday. So we had to fly around and find a place to rent a tux that could get it in in time, purchase flowers, come up with picture location. Finally, we got it all put together today and will spend much of tomorrow in a hurried state with a camera constantly clicking!!

He has eaten well the last few days but I don't think it is near enough calories to gain weight. We talked about it today and he said if he doesn't gain and the GI wants to do supplemental EN overnight that he will do it. It was a relief to hear it but I told him there wasn't a choice if the GI px'ed because it is a med just like his others, he agreed.

Hope all is going well with everyone, we are still basking in the light of being discharged, HA, oh and still catching up the laundry!! Where do all these freakin' dirty clothes come from??? He was in a hospital gown for 7 days for pete's sake!!!
 
Clash said:
oh and still catching up the laundry!! Where do all these freakin' dirty clothes come from??? He was in a hospital gown for 7 days for pete's sake!!!
Click to expand...

I'm convinced they breed and multiply :) only way to explain it. That and the folded "laundry" I find in the hamper because they were too lazy to put it away. ARGGHH!

Hope he has fun at the dance.
 
Oh you are so right, I cannot tell the difference between C's dirty clothes and clean clothes because they layer his floor from one wall to the other!!! I'll pick up something to wash and he say "NO that's clean!!" HTH do you know if it is laying on the floor amongst the rest of your wardrobe!!
 
I've have my doubts that he will make it the whole dance but I know it will lift his spirits for sure! I dread all the craziness of the day but it'll be well worth it to get a pic of C since he rarely allows me to pull the camera out!!!
 
That is so great, I hope you can sneak a picture on here for us to see....
I wonder if he knows how many of us mom are rooting for him tomorrow-lol
that would be more than a boy could handle :)

best wishes
 
So funny how a "sweet gesture" by a girl ended up costing you for tux, flowers, pictures. But seriously, what a turnaround. It's clear that not only does C feel better, but so do you! We're here at the hospital now, so I'm looking forward to that feeling of getting home after living in the "land that time forgot" for a week. I too look forward to getting to see at least one pic from the formal tomorrow!
 
That was so nice she asked him. I do find myself going out of my way to agree to social events whenever Andrew is invited anywhere. I feel he goes through so much medically that he really needs to enjoy time with friends, etc.
Hope it goes well - always nice to get some pictures when they are all dressed up!
 
I wish we could rent prom dresses!! I've got two girls going this year! I heard them whispering with their mother. I about hit the ceiling!!

Good to hear C's feeling up to the dance!
 
Dexy, been there there done that with my daughter, I was beginning to think formal dress shopping might be her career before HS graduation! And it didn't end there...college formals just took its place!
 
Haha! I know, we recently went through J's formal dresses from HS and she was dumbfounded by adding up the money spent on all of them but at the time you couldn't get her to see past the the excitement of that season's formal wear catalogs coming out!
 
Boy oh boy Clash...I have missed so much! :(:(:(

I am so very sorry to hear of all that C has been going through, how awful for you both...:ghug:

Both of my kids had the vomiting thing and loss of appetite with their TI Crohn's.

Harking back to the measurement of pain. Crohn's kids surely do have a very high pain threshold. It was the thing that really broke my heart when Sarah was diagnosed...the realisation of just how much pain she must have been in and how that pain had become a way life for her. She had a ruptured bowel and still she didn't get any higher than a 7, I was gutted.
I found after that I tended to marry both what she saying with non verbal signs to try and get a truer picture of what we were dealing with.

These are the descriptors I use to assess pain:

0-1 No pain
2-3 Mild pain
4-5 Discomforting - moderate pain
6-7 Distressing - severe pain
8-9 Intense - very severe pain
10 Unbearable pain

But perhaps our kids can relate better to this?...

0painscale.jpg


Thinking of you guys, :heart:
Dusty. xxx
 
Oh my, Dusty! Thank you so much for posting that I will have to show it to C! He will love it! He woke me up at 5:30 this morning with joint pain, he said he had done the heating pad and Tylenol to no avail and the pain was at a 6. He wanted more Tylenol but it hadn't been long enough, I tried to get him to take the pain meds the GI had px'ed before our hospital visit but he insists they don't affect the pain enough to deal with the buzzy, swirlhead(his word) feeling they give him. So he just wanted to talk to get his mind off the pain so he could sleep.

I can't believe Sarah was a 7 with that going on, you are right, it is heartbreaking what they come to consider normal.
 
thinking of you and C-- sending more hugs. I hope he feels well enough to go today :)

DustyKat: love the chart, I might show that to B too. She is so tired of hearing, "on a scale of 1-10, how high is the pain?"
 
I don't know if this helps guys, but when I injured my trigeminal nerve I saw a stack of doctors and was told multiple times although they ask for a pain rating number they generally assess pain more based on body language than on the number reported.

One of my specialists told me he works on a 10 scale where everything above a 7 is unbearable agony to the person experiencing but where there are really obvious differences to the experienced eye based on facial expressions, body language, level of shake/twitching.

My experience is that often when they are asking for a score out 10, they say to compare to the worst pain you've experienced or against the pain you experience normally. When they ask it as relative qustion like that, they can be using the number score to judge where the pain their seeing fits within your pain range (rather than how severe the pain they are seeing is), which can help them to understand what sort of pain you experience regularly.
 
Checking in on you! Hope C is feeling better today. Ryan is def talking about Camp Oasis. Would love to know if C plans to go.

Dusty, love that pain chart! Gotta show Ryan.
 
Been away for a couple of days... how was the dance? Where are the pics?!?! :D
 
C had a great time at the formal last night, it was freezing here and those poor kids had picked outdoor locations for their before formal pics and they all nearly froze to death. I plan on uploading some of the pics, hopefully tonight if I don't get side tracked.

He has been really fatigued today, I knew it would take its toll but I'm so glad he was able to go. He ate well today and that was good to see as well. The joint pain is still around but not at the level it was.

jmckinley, C is definitely going, I am going to fill out the app and all tonight. I do hope that Ryan will be able to go as well!
 
I have let Baylee go do things when I know she may have to recover for the next several. Even shopping can take its toll on them. But sometimes they just need to have some good ol fashioned fun :)... Best to you and we will watch for those pics.
 
Glad he had fun. I agree with Julie, sometimes you have to let them even though you know they are going to be paying for it (in terms of fatigue) for the next few days.
Jack is getting excited for Camp, just heard his paperwork is all in doctor review and should hear by end of month if he is approved.
 
Jmrogers4 said:
Glad he had fun. I agree with Julie, sometimes you have to let them even though you know they are going to be paying for it (in terms of fatigue) for the next few days.
Jack is getting excited for Camp, just heard his paperwork is all in doctor review and should hear by end of month if he is approved.
Click to expand...

Will Jack be in the Washington camp?
 
Yes he will, is Jaedyn going? or thinking about going? They are an incredible bunch of kids and it is a beautiful camp overlooking the Sound about a 45 minute drive from Seattle and they have a private saltwater lagoon to swim in and boat on. Not that I'm pushing but I think she would have a wonderful time and it was really helpful for Jack right after he was diagnosed to go and be with other kids dealing with all the same stuff.
 
Glad he had fun! It is so exciting to see them go and have fun and enjoy youth...even if they do take a few days to recover. I am glad he is eating well afterwards.

Ryan is also in bed early tonight. Still recovering from a 7 to midnight sweet 16 party this weekend. He had a blast, but he's been beat!

I will keep encouraging Ryan to go. He is actually excited at the thought of it. Never thought I'd hear him say doing something outside would be fun LOL. It will be a week after we go to a DUDE RANCH. He will get his fill of the great outdoors :)
 
Cool...a DUDE RANCH! That sounds fun! I did the online app for Camp Oasis last night now have to get the hard copy stuff together to send off. The Child Life counselor at the hospital really got him excited about going and he is looking forward to it.
 
Jmrogers4 said:
Yes he will, is Jaedyn going? or thinking about going? They are an incredible bunch of kids and it is a beautiful camp overlooking the Sound about a 45 minute drive from Seattle and they have a private saltwater lagoon to swim in and boat on. Not that I'm pushing but I think she would have a wonderful time and it was really helpful for Jack right after he was diagnosed to go and be with other kids dealing with all the same stuff.
Click to expand...

I'm going to see if my son can go to this camp even though we are Canadian. According to the website it looks like it might be possible...
 

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