• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

C is having symptoms

Clash

Clash

About a week after last infusion, GI nurse called and said that if C had symptoms before next infusion GI wanted to scope.

Next C got the virus going around which started one morning with weird mucus bm but that was all. It turned out to be the crud going around, sore throat, cough, fever. C did really well it started on last Monday, fever by Tuesday, feeling really good by Saturday. I had called the GI nurse when I saw the first bm but let her know it was the crud and she said wait two days until after fever has gone to give MTX, gave it on Sunday.

C woke up this morning went to school and called with really bad earache. I ran him by the Ped and he checked him out. He said no infection, seems his eustation tubes probably stopped up, mucus clear, no fever so trying to dry it up with OTC meds.

Tonight C had a bm(this is graphic, sorry) it was well formed, large, ragged edges, bright red blood and flakes covering some of it and on toilet paper also the bm was pale but throughout it was dark clot like things embedded, seriously looked like raisins:)ack: sorry!!). C doesn't eat raisins. Could it be darker blood from higher up? Ughhh..

C says he has had knee pain and back pain today, he said it was probably a 5 or 6 on the pain scale but the earache was so bad he hasn't really paid attention to the joint pain.

So, I'm supposed to call the GI nurse if there are any symptoms, the red blood could be his skin tag(he's going to check in the shower) but to check the possibly darker blood I would have to wait for wait a day or so for his next bm. I just have no idea if I should call or not?

:depressed:
 
Tesscorm

Tesscorm

Moderator
Staff member
Is he having any other GI symptoms, other than the joint pain? He probably took some cold med over the last few days, right? Being sick and taking cold medicines can sometimes throw my 'system' off for a few days and, with crohnies, the effect could be even more noticeable without it actually meaning it's a flare... make sense?

If it were me, I'd probably be on pins and needles :eek: but, I'm sure you can wait to see how things are tomorrow...??? But, if the blood isn't gone or he has any more symptoms, I'd call the nurse. :ghug:
 
Johnnysmom

Johnnysmom

As long as pain isn't getting worse I would wait and check out the next BM. If it is normal I would chalk it up to the virus. If he has more symptoms or more blood I would call and tell the nurse.

When my son had tubes and they got stopped up and his ENT suctioned the fluid out. It would immediately relieve the pressure. He also had larger tubes put in to prevent them from being stopped up with fluid.

Hoping C is feeling better soon!
 
Clash

Clash

Thanks guys, the only meds he has taken is his usual zyrtec and flonase, we added afrin and sudafed to try and dry the fluid in the tubes up but he hadn't had either at the time of bm.

I'm going to try and wait it out til next bm. C doesn't usually have pain until it gets further along. He doesn't have mouth ulcers which is usually an early sign so that's a good sign.

C had tubes when he was a lot younger, once they were placed he never had another problem they finally came out after about 3 years and no problems since.
 
Jmrogers4

Jmrogers4

Hope he is feeling better, my mother and mother in law both just recently had a virus - started out as earaches, moved to headaches and joint pain - lasted about a week. Hope is just the virus still messing up his system a little. Keep us posted. You know on this site you can never be too graphic with the BM and we are the only people who would ask additional questions about it.
 
Crohn's Mom

Crohn's Mom

Moderator
Awe Clash goodness I'm sorry he's having issues ! :(

We have a "bug" going around here, but it only seems to be lasting about 3-4 days.

Fingers crossed that is "all" that's happening !

:hug:
 
jmckinley

jmckinley

Sorry that C is having some problems. I agree that I would wait until the next BM and see how that looks. It could be that fighting off the crud put him in a position to have a few problems, but that getting over it will level everything out. We are actually going through a similar thing here. Ryan had a bug that has upset the status quo a bit. Maybe C could have some Boost or eat a bland diet for a few days and all will correct itself.

(((Hugs)))
 
Clash

Clash

Thanks for the hugs jmckinley, I'm only able to get strawberry ensure down him at this point but I've tried to stay bland with the diet. We are still waiting for another bm. He stayed in bed all day yesterday and slept alot. Today he hasn't been out of bed nor has he been awake for all but maybe an hour. He says the ear/jaw pain is a little better especially after med dosages but the joint pain and fatiugue are still really bad. Oh how I want this to be related to the virus!!!

I hope Ryan is feeling better soon! Did Ryan have the crud too or was it a stomach virus? Does he lose weight with viruses? C dropped some weight due to the virus last week now with this his appetite still isn't improved.
 
jmckinley

jmckinley

Did they say C had an ear infection? The jaw pain could be from infection and he would need an antibiotic. Bless his heart. You know they don't feel good when they sleep all day! I can imagine he isn't eating much if his jaw and ear hurt. It hurts so much to chew!

It's funny how we are often in the same boat! Ryan put himself to bed early tonight. And yes, Ryan lost some weight. All the drainage made him nauseous. But he keeps losing now. You can see the details of his problems on my vent. Stress and crud have caused his problems. Just trying to control now before we lose it!
 
Clash

Clash

We went to the Ped yesterday and he said it was infection, all fluids are clear but he thought the tube was stopped up, at that time though the pain wasn't in his jaw. We don't have any fever but yeah he isn't eating much due to the pain.

It is funny we seem to be on the same schedule. I was already worried that C wouldn't be able to gain the weight he had lost last week now I'm worried he is going to lose more.

I think C is really frustrated that he may not make it to the infusion, you know how teens are don't say much but the mood goes downhill and you get grunts for responses.
 
jmckinley

jmckinley

There are lots of lymph nodes in that area that get full and tender....makes the jaw, face and everything hurt!

Grunts...Ryan is practically a neanderthal (excuse my spelling). The only thing I can hear clearly is Moooooooom! That seems to come out pretty well. And the fact that they keep it all to themselves can really just make their gut worse. How far away is his next infusion?

I worry crazy about the weight too. Losing makes the tiredness and paleness so much worse. Ryan just rolls his eyes when I ask him to go weigh. I just think he might break sometimes like a tall skinny pine tree (only in the South LOL)!
 
Clash

Clash

I called the GP today and left word about the jaw pain(since he said to call with any new symptoms) the response was keep taking the meds. But the meds are just(along with his usual zyrtec and flonase) sudafed and afrin. It dries things up right after dosage C thinks and the pains isn't quite as bad but comes back before next dose. If he is still not improving by tomorrow evening I'm going to make another appt for GP in reference to earache/jaw pain plus his cough is getting worse.

Same here, Moooooom is only intelligible word and I can tell by the inflection if its a whiney, surly, angry or pleading mood. Everything else is neaderthal speak with occasional eye roll, I'm fluid in eyeroll responses HA!

Haha C would be a scrub pine as he is only 5'6" but yep I get the same whine at weigh time. I do tend to get obsessive about weight and I think that is probably at play with this fatigue.
 
CarolinAlaska

CarolinAlaska

Holding It Together
I'm wondering if Clash isn't having some TMJ. It causes ear/jaw pain. If he is flared up in other joints, why not there. Ask him to hold his jaw right in front of his ears and open his mouth. If he has pain/tenderness/popping there it could be TMJ...
 
Sascot

Sascot

Sorry to hear Clash isn't feeling well. Does sound like his symptoms are very hard to differentiate between a flare and a virus/infection. The bugs we had over Christmas/New Year were really awful and my friend ended up sleeping away most of about 3 weeks and it took her at least 5 weeks to feel "normal" again. As for the bm, I've never had to deal with that so can't really advise, but I would think it's ok to wait for the next one before phoning the GI. :hang:
 
Jmrogers4

Jmrogers4

HA HA HA scrub pine, skinny pine :) I guess that would make Jack a bonsai. I think the virus is what set us off on this latest path and yes he was pretty much sleeping days at a time. Hope C and Ryan are feeling better.
Jack will only drink the strawberry as well.
 
Clash

Clash

CarolinAlaska, the earache came first, then moved down to lower jaw. Would the sudafed and afrin help with TMJ? Soon after his dosage he says it feels a little better but doesn't last. When he gets up I'll ask him to do that exercise and check for tenderness, pain or popping.

I've have been wondering about the jaw pain in relation to other joints flaring and I do remember a thread on the forum about TMJ and Crohns.

The only thing is he has the cough to go along with this, you know that cruddy allergy/sinus cough...I just don't know at this point. Ugghhh...so frustrated.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Theoretically I don't know how those meds would help TMJ. You do want to be careful not to use Afrin more than 3 days at a time or it WILL cause rebound congestion - meaning he won't be able to breathe without it. It can be quite addictive. Have him drink lots of warm liquids if he can to help wash the drainage from his eustachian tubes...
 
Clash

Clash

Thanks Carol, he tried the exercize and no popping or tenderness can't really tell about the pain because it is constant. My uncle was thoroughly addicted to Afrin, he always had an Afrin bottle close by. C has only been doing it twice a day as I don't want him permanently connected to an Afrin bottle as my uncle was.

I will try the warm liquids, any tips on ones that would be best?
 
Sascot

Sascot

Tea is the best hot drink you can have if you have a cough/cold as it contains something that helps ease the cough (the name escapes me :ysmile:).
 
Tesscorm

Tesscorm

Moderator
Staff member
Either Liptons or Tetley has a Lemon Ginseng tea... last time I had a cold, I drank lots of it and thought it did help... I sweetened it with honey (figured I would cover all my bases!)
 
Clash

Clash

Trying the tea today, the jaw pain is gone, there is still some ear pain and this dry cough that just won't quit. C was awake more yesterday evening and you could tell he was feeling better. He still says the joint pain is pretty bad. Still waiting on a bm but since he hasn't ate much not sure when that is going to happen.
 
Clash

Clash

Ok guys I think I need to give C some miralax tomorrow. Still no bm and I am getting concerned. His earache is gone from his right ear but now he says his left ear feels blocked up and a little painful. The joint pain is hanging on and although he stayed up in bed for a good part of today he fell asleep fairly early this evening and looked really pale.

I'm going to call the GI nurse first thing in the morning. I don't know if this is just from all that is going on from the ears/coughing and no bm because he hasn't ate a whole lot but still it seems he's eaten enough in 3 days for a bm. Sorry if this all seems jumbled just worried and confused.
 
Sascot

Sascot

That's a shame, was hoping he had started to get better. Hope you manage to speak to the nurse and get some advice. If it wasn't for the lack of bm, I would have said it still sounds like a bug. My daughter was ill 2 weeks ago with a cough then seemed to get better - back at school, etc, but the last couple days she is getting blocked up again and her right ear is really sore. Things seem to be lasting ages this winter.
 
my little penguin

my little penguin

Moderator
Staff member
Hugs..
Rule of thumb
2 days no BM and miralax goes in :)
At least for my kid to avoid damage to colon/ rectum

Check with your Gi though
 
Clash

Clash

Ok so GI/GI nurse on vacay, another nurse called. She is going to try to contact GI/GI nurse and if not another GI. She feels miralax but wants to run all symptoms by Doc. His regular GI mentioned that last time, I've just been reluctant since he hasn't been eating all that much and his normal is once every other day. But I do feel he has at least eaten enough by now that we should've seen a bm. He is still asleep, sleeping alot and really pale. Not sure what is going on.
 
Clash

Clash

C's GI wanted C to see the on call GI so GI nurse had us come to ER. The on call GI admitted C. C seems to be feeling ok, GI ordered fc test, the antibodies test, abdo xrays and C is doing miralax. He has had a bm, really firm tinged with bloo d and lots of mucus Hope everyone is doing well.
 
Last edited:
Clash

Clash

Thanks MLP, I hope this is just residual viral stuff. The ped GI we saw was super nice and she said she didn't think he was going to be real bad off but wanted to watch him during miralax push and run some tests. Is mucus telling of anything?
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Sorry to see he's going through so much:( Constipation has never been an issue with us but EJ always has mucus when there's a problem. I think it's the bodies response to inflammation. I hope you get things sorted quickly for him.
 
Clash

Clash

Ughh his eye inflammation, episcleritis is back! His seems to run along with a flare but I don't recall can it run with or without a flare?

We had 5 sachets of miralax, he had 1 bowel movement after the first sachet hasn't been since. He's been finished with miralax for about 4 hours. Not sure if his lack of more movements is due to not having ate much this week or what.
 
Niks

Niks

Hope C starts to pick up soon! You've all been going through it :(. Hopefully now he's been admitted you can start to get on top of things.

Thinking of you guys :ghug:
 
my little penguin

my little penguin

Moderator
Staff member
Miralax can take up to three days to work since The colon can store about three days worth.
5 satchels = 5 capfuls???
Did they also give a laxative ( senna or ducolax)?
If not it just may take more time .
I am sure they are waiting in X-ray results to see how much to push it.
Typically when DS is increased to one capful given his age and weight things move forward in about 24 hours .
DS aslo has mucus/blood when things are not quite right.
Hope things improve
 
Tesscorm

Tesscorm

Moderator
Staff member
Sorry it's reached the point that he's had to be admitted! But, I am glad he's there and being taken care of!! I hope you get some of the results today. :ghug: :ghug:
 
Clash

Clash

MLP I'm not sure if 5=5 or not it seems one of the nurses said its a little more than a capful but I was so jumbled by the fact they were admitting him, I'm not sure. They also gave him a dulcolax suppository. Ped GI came in said she was going ahead with his Remicade today keeping him tonight for observation and possible doing an MRE on Monday. I think if she decides not to do MRE then he may he released tomorrow.
 
Jmrogers4

Jmrogers4

Hope it all gets worked out, sorry it has gotten to the point where they admitted him but hope everything gets taken care of and he is "moving" along soon
 
Clash

Clash

He's sleeping while they are infusing him. I forgot, GI also said SED rate wasn't to high, 24 but then asked does he show in lab work. All I could tell her was flare before last they called and said blood work looks good then FC test came back 1700. He has complained of his knees a lot today and they have heating pads and are giving him tylenol still not one GI pain, cramp nothing. Still only that one bm, he's ate breakfast and walked around the floors since then. I asked if I should expect another bm and the GI laughed and said who knows with this fella. She said they may push miralax again.

C didn't like the idea of doing Remi today he thought it was too soon and he was a little frightened by it I think.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Sorry about all the problems C is experiencing. Hospitalization puts everything in a tizzy too, doesn't it? I hope he is feeling better quickly and everything starts moving right.
 
Tesscorm

Tesscorm

Moderator
Staff member
Clash said:
C didn't like the idea of doing Remi today he thought it was too soon and he was a little frightened by it I think.
Click to expand...
Poor kid, it's just not fair that, at their age, these kids have to worry about treatments!!

Hope the night goes smoothly and he's beginning to feel better tomorrow!!
 
Clash

Clash

Well, we made it home from the hosptital yesterday. I do believe C had multiple things going on which made it hard to determine what was what. He is on a z-pac for the sinus earache/coughing. He had his Remicade treatment on Saturday afternoon.

He was in alot of pain, joint and stomach cramps, Saturday night but due to the constipation he couldn't have any pain meds(we used tylenol and heating pads). When they brought up pain meds causing constipation I realized his GP had px'ed a cough med with pain meds in it. So that is probably why no bm for so long, combined with no appetite from sinus earache issue.

That still doesn't explain why the joint pain and eye inflammation started occuring so I guess he was flaring too? He's never had joint pain or eye inflammation show up when he wasn't in a flare but he usually has fevers and mouth ulcers too.

His knees were still hurting pretty bad at discharge time but as the evening wore on they seemed to improve. He did have some urgent bms last night but other than being a 6 on the Bristol scale there was no blood or mucus.

Now we wait for the antibodies test and the FC test, should be Wednesday. Not really sure what the next step is, the hospital doc felt sure C's GI would want to MRE or scope possibly both. She was going to have the office call me but said if I don't hear from them by Wednesday call them.

Also, if this Zpack doesn't do it's thing we will be going back to Ped to get to the bottom of his sinus issues. Thanks so much for all the thoughts and hugs, I really hope things are improving and that we will see a clear plan or direction soon!
 
Tesscorm

Tesscorm

Moderator
Staff member
Glad you're home! :ghug: I hope today brings less knee pain and that he feels better from his sinus issues.

:ghug: :ghug:
 
Clash

Clash

Thanks, you guys. Well as it goes, Remi did it's thing and he woke up feeling really good today. I think the hospital schedule has his sleep schedule messed up because he slept late but he was up and right into the shower which I think means very little fatigue. He said his joints felt good, and no more tummy issues or weird, urgent bms. I truly hate this diesease!

I am hoping the FC and antibody test give us some answers or a direction. I really don't want to give up on Remi but 3.5 to 4 weeks of effectiveness is not enough to allow him to lead a normal life and make it through school. He's missed two weeks and has to be overwelmed, I know I am.
 
Clash

Clash

So I have a question for all you parents that have kids that deal with pain and how you quantify it.

Throughout the admission process and up until discharge C was questioned about his pain level, where is it 1-10. After one particularly bad bout where I knew he wasn't coping well he told the nurse 4 maybe 5. I don't remember them explaining the pain other than 10 would be the worst kind of pain and 1 would be a minor irratation that doesn't come to mind often.

When the nurse left the room I got the little "Smiley Face/word descripton" pain scale and showed him what it had for 4, it had a sad face and "hurts a little bit more" typed under it. He said going by that scale at it's worst I would be at an 8 but a 6 this last bout. I told him you need to tell her that and he said I don't want her to think that I'm making up the pain because I'm the one feeling it. Ummmm........

So how does the rest of you explain to your kids how to rate the pain?
 
my little penguin

my little penguin

Moderator
Staff member
Mine is younger but he was having pain daily for a long time and we needed to track it.
For DS
1-2 it hurts but more of annoying pain - you can do what you need to
3 it hurts - you need a hot pack to make it feel a little better- you may be resting but not constant
4 -5 not much is going to help . You wAnt to rest - some crying involved
6 = fetal position - lots of crying possible vomiting .

Our Gi is aware of DS unique rating system and knows just how bad it is by number now.
DS has also been very consistent in how he rates it.
This has helped us gauge what helps and what does not.

I think if you can help C interpret his own scale - then just translate it for the docs and nurses .

Hope that helps
 
Clash

Clash

That sounds reasonable because 1-2 don't mean anything like a paper cut 3-4 is aggravating but he's still mobile and able to carry-out activities and 5-6 is heating pads and tylenol just aren't getting it under control. He explained 8 much like your 6-fetal position, rocking, tears and nauseated due to the pain. So I can just give C's idea of the scale to the doc? I'm going to put this in writing and put it in my handy dandy notebook...Did I just quote Blues Clues? Yikes!
 
Tesscorm

Tesscorm

Moderator
Staff member
Just about what u said thhat remi is wearing off after 3-4 weeks... Not sure if this has been suggested to you but my friends daughter is on remi and mtx but she is getting symptoms after 4 weeks too; they are most likely going to move her to a 4 week schedule. Also, not sure what dosage C is on but while it is usually 5 (mg/kg???), I did read of another member moving up to 10. :ghug: just a couple of possibilities...
 
Clash

Clash

Thanks, Tesscorm, C is at 10mg/kg and I know the 4 week schedule came up at one appt. early on, and only in the context of GI hates going to four because the kids start to find it such an imposition and it is harder to keep them compliant when off at college.

Ughh...I'm so impatient, I just want to see the test results.

BTW, C might not be as far along as I thought, he still feels like at any moment he is going to have a bm but just not quite there and he said joint pain was still there but not keeping him in bed bad. Still feels really fatigued but I think this may due to hospital schedule/sleep schedule mess up.
 
Jmrogers4

Jmrogers4

Jack's GI usually ups pain scale from whatever Jack says as he seems to tolerate a high level. He broke his foot last year in the morning during PE at school went all day on it and then practiced football that afternoon running wind sprints for nearly 2 hours. When I picked him up he had tears running down his face wasn't sobbing just the tears and said his foot was bothering him.
I like your descriptions of your pain scales we may have to use that because when he says 1-2 it's a broken foot.
 
Clash

Clash

Jmrogers4 that is why I asked the question too, because the nurse came in later that night when C was finally asleep and I was telling her about the convo C and I had. She said in her experience on the IBD floor she has found that IBD kids seem to treat some amount of pain as normal. She thinks alot of them have dealt with it for awhile before dx so it becomes their norm. She said it makes it harder to determine where they are at on the pain scale at times.
 
Clash

Clash

I know it sucks to think of it in those terms. Our poor kiddos, C has said that until that first Remicade he thought how he had felt for so long was normal and if he hadn't started having the fevers and mouth ulcers he never would have known that it wasn't supposed to feel that was with his stomach.
 
Tesscorm

Tesscorm

Moderator
Staff member
Hate that this is the case for all our kids!

I hope he really does begin to feel better by tomorrow!!! As he only had the remicade on Saturday and is also fighting the sinus issues, hopefully, it's just taking a bit longer for the remicade to really kick in!!! Wishing tomorrow brings a better day for him! :ghug:
 
Clash

Clash

Next question, sorry guys I know I've been on question overload. C has been complaining of hot flashes today, anyone's kiddos experienced that with CD or Meds? It is new for C as far as I recall. He used to have night sweats but I think part of that was running fevers at night or at least when I started taking temps that was what was happening.

Edit: He said the only time he remembers feeling hot flashes like this was when he was on pred and had just started Remi last year.(he is not on pred now) But the hot flashes went away when we tapered of pred.
 
Sascot

Sascot

Sorry, I don't have any advice on hot flushes. Andrew used to get hot now and again, but used to go away after about 1/2 hour. That was before diagnosis.
As for pain, the numbers I suppose can only be a guide, it is such an individual thing. They never seem to want to "bother" the docs. Once we were taken to the ward after Andrew had been doubled over in pain for 4 days - the doc asked him how he was and he says "fine" :ywow:. Not a happy mother!
 
Crohn's Mom

Crohn's Mom

Moderator
I don't have an answer but Gab is going through the same thing. She is tapering off of Entocort, but it's been going on a while now so I don't think that's it.
I've read a lot of other threads on here tho with people saying its "just part of Crohn's" -
Wish there was a better answer than that for our kiddos! :(
 
Clash

Clash

I've read that too, Crohn's Mom. C didn't end up having a great day. I just feel if we could get past one of the issues going on then it might make the others more tolerable. I also read alot of people on Z-packs get hot flashes but couldn't find it listed as a side effect on the drug's website, so I just don't know. Hope things are just taking their time about getting better.
 
Clash

Clash

Just got off the phone with the GI nurse, it seems we are headed back to the hospital, they are going to admit him and do an MRE. His GI is still out of town so his partner is admitting him. C was pretty bad off last night. Today he has had 5 bm the last two were just yellow liquid, it honestly looked like he had peed in the toilet. He is not in pain as much as he says his stomach is uncomfortable. Up until 30 min ago he wasn't eating then all of the sudden he said he would eat a hotdog and did(wish that had happened before the GI nurse convo) but it was right after eating that he had to rush to the bathroom only to pass watery liquid. The joint pain stays around sometimes not as bad as others.

They want him first thing in the morning but I already have a procedure for myself scheduled(that I've already put off a couple of times due to his issues) that I have to do so I guess we will be leaving straight after.

I don't know what to think, this isn't the sickest I've seen him but it is the most worried I have seen him. None of this reminds me of CD flares of the past I just don't know what to think and I'm ready for his dr to be back!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Wow, I'm so sorry to hear this... you must be so worried and confused!!! At least you know, while he's in the hospital, he be closely monitored! And, from my experience, you get test results quicker... the sooner you know what's going on, the sooner you get start fixing it!!

I hope things get a bit better (or, at least, stay stable)!!!! :ghug: :ghug: :ghug:
 
Hope345

Hope345

I hope the MRE tells you what you need to know. thinking of you both.:heart:

You probably already did plenty of research but I found this under yellow d.:

Yellow Bowel Movement Color Is Rare

A pale or yellow colored stool is rare and can be caused by a few different malfunctions of the digestive system.

The first is known as Gilbert's Syndrome, which mainly affects males in their teens. If you suffer from this ailment, it means your liver doesn't process enough red blood cells. Broken down, red blood cells give stool much of its color. When fewer cells are processed, the stool can appear a pale brown or yellow in color.

A more serious problem is yellow stool resulting from malabsorption. When your body doesn't properly absorb fats from the food you eat, the excess fat passes through your colon and into your stool, giving your stool a yellowish hue.

A parasite infection known as giardia, in which protozoans invade the intestines, results in diarrhea that is yellow in color.

sending hugs your way:
 
Sascot

Sascot

Glad to hear that they are going to admit him and find out what's happening! Hope you get some answers soon so he can feel better. Good luck for your procedure as well (yes it's hard fitting your own stuff in)
 
Clash

Clash

So we arrived at the hospital today and they had a bed ready for us. C has been complaining of joint pain but has only had one bm although it did have blood in it. He seems hydrated but they have him on IV fluids. His GI has been contacted and has a colonoscopy scheduled for Friday, they also wanted an MRE tomorrow but something with the machine, maintenance and lots of surgical kids in line, so the MRE will be Saturday. So nurse said she felt Saturday would be the earliest we would be out.

C was really down about coming back but has settled in nicely and is playing on his laptop and sleeping.

He ate a little bit of lunch, although once again his eyes were much bigger than his stomach.

At admission on Friday evening, he weighed 51.3 kg(113.0 lbs) at admission today he weighed 48.5 kg(106.9 lbs) so a little over 7 lbs of weight loss in 5 days:(

He's isolated right now because they are checking for C-Diff but it would have to be atypical symptoms, I think.

Anyway, happy his GI will be returning and performing the colonoscopy. Hopeful they will get to the bottom of all this real soon!
 
Last edited:
Tesscorm

Tesscorm

Moderator
Staff member
Was watching for your update ALLLLLL day!!! :)

But, I'm glad he's in the hospital and the tests will be done soon. Hopefully, you have clear answers by Saturday and a plan to go forward! :ghug:
 
Clash

Clash

So there is no chance they will buddy up on the pain med at bedtime, to help me sleep too, right?? If that is not an option it should be(should've snuck in a bottle of CIC's wine) because I am so wound up there is no way I'm going to be doing anything but analysing what every possible outcome of every test is going to be and how that is going to affect each angle of C's treatment...
 
Hope345

Hope345

I hope all goes well for your son. I understand your anxiety, but hopefully this will give you some answers that will help. :)
thinking of you...
 
Sascot

Sascot

Hope you managed to get some sleep. I always find the first night almost impossible to sleep! It's good they are planning to do all the tests to get a good idea what's going on. Hope it all goes well!
 
jmckinley

jmckinley

Clash, so sorry C is feeling bad enough to warrant a stay in the hospital. I hope that you get some answers soon and don't go stir crazy on isolation!! I hated that last summer with Ryan.

Hugs!!!
 
Crohn's Mom

Crohn's Mom

Moderator
Just catching up Clash ~
so sorry he's been admitted :(

Hope you got some rest (or at least someone delivered you wine!)
Don't forget to take care of you :heart:
 
Tesscorm

Tesscorm

Moderator
Staff member
Hope things are going okay today... :hug:

Love the new picture... we're currently at -9 deg C (15 deg F ... brrrr) so I'm a bit jealous of the scenery!!! :voodoo:

:D
 
Clash

Clash

The pic is from summer, overcast here rain all day tomorrow! Joint pain is still pretty bad and we are finishing up prep for scope tomorrow. Thanks for all the well wishes.
 
Clash

Clash

Hopefully, we are almost finished with the prep. He has managed wonderfully with the prep and all that it entails, should be running clear soon.

So a life coach came in this afternoon and talked to him while I was at the cafeteria and he was excited about their conversation. He says he is going to consider going to Camp Oasis and that there are 5 other teenage boys on the floor right now dealing with CD or UC. The life coach had thought of getting them all together(several will be going to camp Oasis) but due to testing schedules and several surgeries there isn't a time available to do so.

C didn't rave about all this(teen boys never do) but I could tell he liked the idea of all she had to say and she is supposed to be bringing the camp info in tomorrow for him.

The joint pain became really unbearable some time ago and they gave him some pain med, can't remember the name. I went down to the cafe and he texted and asked could I bring the xbox back when I came...Huh? When you come back from home will you bring my xbox...Ummm I'm downstairs which is where I told you I was going...Oh. HAHA! Poor thing. Anyway lifecoach brought him xbox and games.
 
Jmrogers4

Jmrogers4

Glad prep is going well.
Love Camp Oasis - Jack absolutely loves it. Stays in contact with camp friend all year (they play xbox throughout the year). Wish it was sooner as I think he really could use the support right now, I think he is feeling like he is the only one that has to do any of this stuff. Just mailed his camp package off this morning.
My younger son asked me if we could "fake" him having Crohn's so he could go. UMMM YEAH NO!
 
Clash

Clash

She did make it sound fun. C has been a little down, I think he feels the same as Jack right now, I'm the only one dealing with all this. I think it did C good just to hear there were other teen boys on the floor, not they they are suffering but just that there are others out there coping!
 
Clash

Clash

Oh yeah, I wouldn't had it right at all! But that pain med had him a little out of it, I said I'm going downstairs to the cafeteria, he texts 20 mins later and says don't forget to grab my xbox from the house, "the house" is about 3 hours away! I said remember I was going to the cafeteria we talked about it, he said, "Oh that cafeteria." Ummm...last I checked we don't have a cafeteria at the house!! LOL
 
CarolinAlaska

CarolinAlaska

Holding It Together
I hope your day went well and quickly. I'm sure that it was spent doing prep since C has a colonoscopy tomorrow. I hope you get answers quickly. I like your new picture of C! We're working at getting J signed up for camp too.
 
kimmidwife

kimmidwife

Love the new picture! Good luck with the scope tomorrow! Will be thinking of you guys and checking in to hear any results they give you!
 
You must log in or register to reply here.
Top