# C is having symptoms



## 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 raisinsack: 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:


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## Tesscorm

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  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:


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## 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!


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## 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.


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## 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.


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## Crohn's Mom

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:


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## 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)))


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## 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.


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## 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!


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## 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.


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## 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)!


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## 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.


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## CarolinAlaska

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...


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## 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:


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## 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.


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## 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.


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## CarolinAlaska

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...


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## 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?


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## 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.


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## CarolinAlaska

Yes, tea, hot apple cider, hot water with honey, lemon tea...


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## Tesscorm

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!)


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## my little penguin

Also Nettie pot to clear the sinus ( just not tap water).
Gargle salt water for the throat.


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## 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.


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## 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.


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## 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.


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## Tesscorm

sorry, Clash!!!  I hope you get some guidance from the nurse!!! :ghug:


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## my little penguin

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


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## 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.


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## 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.


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## my little penguin

Hugs 

Glad he is being seen


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## 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?


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## Dexky

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.


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## 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.


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## 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:


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## my little penguin

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


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## Tesscorm

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:


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## Farmwife

Yes, miralax takes awhile. Grace was on 1 1/2 capfuls a day and still wouldn't go everyday.

How's he doing now?


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## 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.


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## 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


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## 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.


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## CarolinAlaska

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.


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## Tesscorm

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.


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!!


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## 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!


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## parentnj

I hope he feels better real soon!


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## my little penguin

Never easy
Hugs


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## Sascot

Glad you are home and infusion went ok. Hope things settle down soon, poor guy deserves a break.


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## Tesscorm

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

:ghug: :ghug:


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## Jmrogers4

Glad you are home and hope things keep improving


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## 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.


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## 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?


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## my little penguin

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


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## 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!


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## Tesscorm

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...


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## 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.


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## 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.


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## 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.


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## Jmrogers4

Makes sense that it would just feel normal to them.


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## 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.


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## Tesscorm

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:


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## 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.


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## Mehita

So sorry you've been going through all of this. I hope he feels better soon!


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## upsetmom

The only time my daughter got hot flashes was when she was on pred.

I hope things settle down...:ghug:.


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## CarolinAlaska

Not something we've experienced here either.  <<<Hugs>>>>


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## 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!


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## Tesscorm

Sorry, wish I could help but no hot flashes here...  :ghug:


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## Crohn's Mom

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!


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## 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.


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## Tesscorm

Clash,  I just came across this thread discussing remicade and hot flashes...  

http://www.crohnsforum.com/showthread.php?t=35085&page=2


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## 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!!


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## Tesscorm

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:


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## upsetmom

:ghug:.. I'm so sorry to hear this.


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## Jmrogers4

Sorry Clash hope you get answers soon.  Sending you lots of hugs ((HUG))


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## my little penguin

Hugs
Sorry to hear this
Glad they are admitting him to get to the bottom of it.


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## Dexky

Bummer Clash!  Hope it's a short stay and quick turnaround for him!


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## parentnj

I hope he feels better soon!


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## kimmidwife

Thinking of you guys! Just had a chance to catch up. Hopefully all goes smoothly and you will get some answers!


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## 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:


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## 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)


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## 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!


----------



## Niks

Good luck!!

Thinking of you both  :heart:

xx


----------



## upsetmom

Good luck......hopefully they'll figure out what wrong.


----------



## my little penguin

Hugs Glad they are getting to the bottom of it.


----------



## Jmrogers4

Glad things are being taken care of, hope the answers come soon.  Thinking of you.  ((HUGS))


----------



## Tesscorm

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

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

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

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

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

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

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:


----------



## 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.


----------



## Tink572

Hate to hear he was admitted again. Good luck with the scope tomorrow.


----------



## 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

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

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!


----------



## Dexky

Clash said:


> Anyway lifecoach brought him xbox and games.


Good thing Clash!  I guarantee you'd have effed that up anyway!  Where's the hdmi?  Where's the turtle headphones?  Moooooooooooommmmmmm!!!!


----------



## 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

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

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!


----------



## Dexky

Good luck today Clash and C!!


----------



## Niks

Good luck today!

Thinking of you both.

:ghug:

(Camp Oasis sounds awesome!!)


----------



## Mehita

Good luck today. Thinking of you!


----------



## jmckinley

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!


----------



## Clash

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.


----------



## Tesscorm

Hope all goes well!!! :ghug: :ghug:


----------



## Sascot

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!


----------



## Jmrogers4

Good luck!


----------



## my little penguin

Good luck
Happy thoughts your way


----------



## Clash

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.


----------



## Jmrogers4

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.


----------



## Tink572

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!


----------



## Clash

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?


----------



## Tesscorm

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:


----------



## parentnj

good luck and our prayers are with you!


----------



## Catherine

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.


----------



## Johnnysmom

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!!


----------



## CarolinAlaska

I hope you hear results soon.  Glad the colon was clear.


----------



## my little penguin

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??


----------



## Clash

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.


----------



## Dexky

I hope you both get some rest tonight Clash!  Good luck tomorrow!


----------



## my little penguin

Good luck in the am


----------



## Tesscorm

Good luck tomorrow!!  :ghug:


----------



## Kimberly27

Holding you both in my thoughts.  Good luck!

You're off of quarantine.  Right?  I hate it.  It made me feel like we were both pariahs in the room.  LOL

Sleep?  Tylenol PM with a wine chaser?  A girl's gotta do what a girl's gotta do!
:hang:

Kimberly


----------



## CarolinAlaska

hope you're both getting a good night's sleep and get to go home tomorrow after the test!


----------



## Sascot

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!


----------



## Niks

Good luck with MRE!  Really hope it shows what's going on..

:ghug:


----------



## Clash

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!


----------



## upsetmom

I hope everything goes well.


----------



## parentnj

good luck!


----------



## my little penguin

Woohoo for a tube to help
Good job C


----------



## Clash

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.


----------



## my little penguin

Waiting is so hard


----------



## Hope345

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


----------



## Clash

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?


----------



## Clash

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.


----------



## Tesscorm

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:


----------



## Hope345

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.


----------



## Sascot

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.


----------



## CarolinAlaska

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.


----------



## Dexky

I hope he gets out of there soon Clash!  I'm sure you're both getting tired of it.


----------



## Niks

Hope you are both doing okay!! Hopefully not too much longer before you get your results and you can go home. 

:ghug:


----------



## Jmrogers4

Thinking of you and C today.


----------



## Clash

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.


----------



## Marni's mom

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!


----------



## Clash

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!!


----------



## my little penguin

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 .


----------



## Hope345

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.


----------



## kimmidwife

Thinking of you guys and hoping you get some answers tomorrow!


----------



## jmckinley

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!!!!


----------



## Niks

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


----------



## Tesscorm

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!!


----------



## Clash

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.


----------



## Sascot

Glad he's feeling a bit better.  Hope you get to go home soon!!


----------



## TracieD

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.


----------



## Hope345

So glad to hear he is feeling better.  Hope you are on your way home today.
Best to you both.


----------



## Clash

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!


----------



## TracieD

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.


----------



## Catherine

Glad to hear that C is home.


----------



## Jmrogers4

Glad you guys are back home.


----------



## Niks

So glad you are home ,  hope C starts to feel much better

xx

:hug:


----------



## my little penguin

Woohoo for your own bed!!!


----------



## jmckinley

Yay for being home! I am glad that C is feeling better! Let us know when you're ready for that virtual cocktail hour!


----------



## CarolinAlaska

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.


----------



## Tesscorm

Woohoo :banana:  Glad he's home...  Hopefully, that, in itself, will help him feel better!!


----------



## Mehita

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??


----------



## Jmrogers4

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??


Yep me too!


----------



## Clash

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.


----------



## Farmwife

I'm so glad your home.
I pray you get to stay for a good long while.


----------



## Clash

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!


----------



## CarolinAlaska

What is the HACA test?


----------



## Clash

The HACA test is the antibodies test it tests for antibodies to Remicade.


----------



## CarolinAlaska

Clash said:


> The HACA test is the antibodies test it tests for antibodies to Remicade.


Thank you!  I've been wondering...


----------



## Clash

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!!!


----------



## Jmrogers4

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!!!


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.


----------



## Clash

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!!


----------



## Clash

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!!!


----------



## Hope345

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


----------



## Marni's mom

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!


----------



## Niks

Aw!! Hope he had  fab time, even if it did cost you a small fortune!


----------



## Sascot

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!


----------



## Dexky

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!


----------



## Clash

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!


----------



## Dexky

Can't they wear the same damn dress twice?  Nobody'll know!!


----------



## Clash

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!


----------



## DustyKat

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?...







Thinking of you guys, :heart: 
Dusty. xxx


----------



## Clash

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.


----------



## DustyKat

Oh no, bless him...:hug: I hope things are settling. 

Dusty. xxx


----------



## Hope345

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?"


----------



## Maree.

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.


----------



## jmckinley

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.


----------



## kimmidwife

checking in hope be is feeling better!


----------



## Tesscorm

Been away for a couple of days... how was the dance?  Where are the pics?!?!


----------



## Clash

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!


----------



## Hope345

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.


----------



## Jmrogers4

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.


----------



## CarolinAlaska

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.


Will Jack be in the Washington camp?


----------



## Jmrogers4

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.


----------



## jmckinley

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


----------



## Clash

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.


----------



## Twiggy930

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.


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...


----------



## Twiggy930

Glad to hear that C is out of the hospital and had a good time at the formal.


----------



## Clash

Ok so I created an album but can't upload the pics, I'm assuming because of their size but I'm not sure how to resize them. I have picassa editing software but can't figure out how to resize.


----------



## Jmrogers4

I have picassa at home.  If you haven't figured it out by this evening.  I'll pm you with instructions as I can't remember what tab it is under


----------



## Tesscorm

I'd love to see the pics but have no idea how to help re the resizing 

Think you need to change your thread title...  eventhough I know he's home, every time I see the title I think 'oh no!'  :lol:


----------



## Clash

Thanks, Jmrogers4!!

Tesscorm, yeah I probably do need to change it! I'm hoping the HACA results are back today, I have a call into the GI nurse so I hope she calls me back!!


----------



## Tesscorm

Hoping you hear soon!!!


----------



## Marni's mom

So?  Where are the photos?  We're impatiently waiting to see the cute couple!


----------



## Clash

I have to get with Jmrogers to figure out the whole resizing thing before I can put pics up.

So, the HACA test came back and no antibodies. On the one hand, I am thrilled because according to the tests done in the hospital the Remi or MTX or both must be doing their job but on the other hand I still don't know what caused all the issues.

I haven't spoken with C's GI yet about all of the test results that we have and the whole picture and what his thinking is, we will meet with him right before the next Remi treatment.

I'm a little frustrated, that one knee still bothers C. It is not as bad as it was but he has good days and bad. Since starting treatment last year, C's norm was 1 bm a day or every other day. Since leaving the hospital he is having 2-4 bms a day, not sure why or what has changed.

Well, that is all I have for now. C is eating good and hopefully gaining weight, if not we will be addressing that as well.


----------



## my little penguin

One word Rheumo
Ok go back to your regularly scheduled. Mlp free day
:tongue:


----------



## Clash

What beyond ANA and those type of bloods would Rhuemy do?
Hosp rhuemy said all those tests were fine
No swelling or redness at location
What tests would I ask Rhuemy for since the first line of tests were fine?

I'm going to keep pushing
The pain hasn't been up to a 6 or 7 since hospital
Last night he asked for tylenol and heating pads 
Said knee pain was a 3 or 4 but that all his muscles ached too(so not a good indicator night)

We are coming up on week 3 after infusion
That is when things went haywire last time
So I'm tracking everything in case it happens again.


----------



## Tesscorm

Very likely this is a stretch but...  Is it possible that the knee pain is not directly related to crohns?  Is there any way that it could be a past injury that flares up sometimes?  I know that cipro (and perhaps flagyl) can cause problems with tendons - could some damage have happened??  And is this something the hospital rheumi would have looked for?


----------



## my little penguin

DS Rheumo follows the Gi blood work 
Does a lot of range of motion stuff during his exam
Checks skin blood issues - basically he handles all the EIM's except for eye stuff and gives Gi recommendations about whether inflammation from an EIM is the start of a Rheumo disorder since Ibd kids tend to get those .


Our Rheumo follows alot of Ibd kids even without JA


----------



## Jmrogers4

Sorry, crazy night last night, sending you a PM right now with instructions, can't wait to see pictures


----------



## Sascot

Was just wondering if it might be the tendons/ligaments where they join the bone that might be acting up.  That might not show up in tests for rheumatoid, etc.  Not sure what test they would need to do though.  I get pain in my joints - mainly fingers and toes, sometimes knees/elbows, but although it feels like pain "at the joint" I believe it is the tendons/ligaments that are causing pain.


----------



## Twiggy930

I second rheumatology!  If your GI isn't quick to refer him (ours wasn't) get your pediatrician to do it.  Our experience was that GI was oddly nonchalant about my son's leg pain but when we finally got in to see rheumatology they took it very seriously.  Our rheumatologist did loads of range of motion tests and some blood work.  My son had enthesitis so the inflammation wasn't actually in the joint but rheumatology follows that too.


----------



## Jmrogers4

I second or I guess third Rheumatology.
Twiggy - I put that camp album up if you want to see pictures.


----------



## Clash

Ok, regardles of what GI has to say about joint pain, I'm asking for a Rheumy, he has seen one but there wasn't much to it. He just ran some blood panels and said his was arthralgia(sp?) and related to his CD and deemed non-inflammatory whereas arthritis would be inflammatory. He suggested some range of motion exercises, otc meds for pain(GI px'ed tramadol after Rheumy appt but we haven't used it). 

I don't think he has ever had a knee injury
Usually it is his lower back and both knees
This time around(before hosp. til now) he feels some pain in lower back and other knee but not bothersome, just right knee that gets to 3 or 4.(higher before hosp. 6 or 7)

C is eating better, still not full on teenage boy diet but he has gained 2lbs!! Not sure if it'll stay but excited all the same! There still isn't something quite right, though. At his present weight I would think GI is still thinking periactin(or another drug that starts with m) and/or ng tube night feedings.

I got the pics in the album too btw!


----------



## Clash

Thanks everyone for all the responses. I really want to get on top of this joint pain, he just isn't as active as he usually is and when he is he pays for it the next day.


----------



## my little penguin

Hugs Clash
DS just saw his Rheumo today.
He gave DS a letter for school .
Checked some puffy fingers and other stuff.

Hope he feels better soon.


----------



## kimmidwife

We found the Rheumy we saw to be useless. He even told us that crohns does not cause joint pain! This guy is supposed to be the top peds Rheumy in the area and the only one on our insurance. We waited four hours to see him both times. I gave up and decided we would continue to treat her joint pain with Tylenol and hot compresses/ warm baths for now.


----------



## CarolinAlaska

kimmidwife said:


> We found the Rheumy we saw to be useless. He even told us that crohns does not cause joint pain! This guy is supposed to be the top peds Rheumy in the area and the only one on our insurance. We waited four hours to see him both times. I gave up and decided we would continue to treat her joint pain with Tylenol and hot compresses/ warm baths for now.


Kim, did he do any other testing or offer any other reason or advice for her problems?  :eek2:


----------



## my little penguin

Hugs Kim
We had the opposite exp.
The Rheumo stated in the letter to the school that DS had musclskelotory pain 2nd to inflammatory bowel disease.
I am so sorry you had a really bad exp .
DS adores his Rheumo.


----------



## kimmidwife

Carol,
He did blood work and then when it was all negative basically wrote her off.


----------



## CarolinAlaska

kimmidwife said:


> Carol,
> He did blood work and then when it was all negative basically wrote her off.


:mad2::stinks::ywow:

That's partially why I'm holding off getting the rheum consult right now offered to us.  Jae isn't currently symptomatic and I'm not sure that anything would show up on labs, so I'm waiting to see what happens, although we had to wait 3-4 months to get offered an appt as it was...


----------



## Clash

I'm wondering if this relates to C's flares or CD at all. This whole "hosptial experience" has been unlike any of his other flares. 

There were no fevers
No mouth ulcers
No GI symptoms until the 5 day/no bm but it went away when we stopped the cough med with hyrdocodone.

There was joint pain(back, knees and feet in the beginning)
weight loss
lack of appetite
malaise/fatigue

With his CD flares, there is a lack of appetite but it is due to the mouth ulcers and tummy pain. The MRE looked good and colonoscopy biopsies looked good(won't have specifics til GI appt)

I thought of drug induced lupus but I think that would show up in the ANA, wouldn't it?

Even C says it doesn't feel like CD flare, I just don't know.


----------



## Marni's mom

Marni is home from the hospital tonight, and she doesn't feel any better either.  Just gave he hydrocodoneso she can sleep.  A week in the hospital and now that she's home it's the same old thing.  When you say C is asking for tylenol, do you mean with codeine or hydrocodone or does regular tylenol work?


----------



## CarolinAlaska

Sounds Crohn-ish to me too, C.  Maybe it isn't the same because it wasn't as severe? Or perhaps because it only affected his small bowel?

Stacey, I'm sorry Marni isn't doing any better.  Did they change her meds or give any solutions or answers?


----------



## Sascot

Wow, the pictures are lovely.  What a handsome boy!  Glad he managed to go and have a good time.
Is there any chance it could just be a virus that won't go away? If you both don't feel like it's a Crohns flare then maybe it isn't.  Could it be Mono - seems to be tiredness, aches and loss of appetite that came up as symptoms.  Hope you get to the bottom of it soon.


----------



## Clash

Marni's Mom, I'm so sorry your sweetie is feeling no better. C has tramadol and was offered hydrocondone px but he refuses both. He says the buzzy headed feeling it gives him isn't a good trade off since it doesn't seem to take away the joint pain. So he uses heating pads and extra strength tylenol they don't take it completely away either but he says they make it bearable.

carolinalaska, C's inflammation has always been in the small bowel, in his TI, now it is just reduced to the ICV, which is narrowed and they don't think the narrowing is due to inflammation. In fact, the PA stated that they didn't see any inflammation and the biopsies didn't show that the narrowed area was inflammation. 

It is just really frustrating. His joint pain has always coincided with a CD flare, like clockwork, this joint pain just seems different. If it was a flare then he flared 3 weeks out from last infusion and that will be this Saturday for this infusion, so here is hoping it was viral. They did test him for Mono and it came back neg, Sascot but I really do hope it was some other bug and it just through things out of whack.

I guess we shall see at the next GI appt what he has to say.


----------



## Tesscorm

Love the pictures!!!  What a handsome guy you have!

Wow, how frustrating for you re his symptoms!!!  How is he today? Can he feel that the joint pain getting a bit better day by day? Was there ever any mention of Lupus?  

I've probably missed it somewhere above but when is the GI apptmt?   

I do hope today's a bit better for him!!! :ghug: :ghug:


----------



## Clash

He is not doing poorly, the joint pain waxes and wanes for the most part. He says he has a better appetite and seems to be eating more but I really think it is a true effort to avoid the GI wanting formula feeds/ng tube or even adding the appetite enhancer, he hates to add another pill to the regimen.

The GI appt is right before his next scheduled Remi which should be Mid march, don't have the calendar in front of me. The GI nurse could go over all the results with me but I'll have questions so I'd rather wait til the GI appt. But all of the tests looked good so... idk.

And thanks for the pic compliments!!


----------



## my little penguin

Did they do a pill cam?
Only asking since our rheumatologist is of the thought when all the EIM's are going there is infllammation somewhere we may not have looked in the right spot.
So he always suggests treating as if we saw it .
This leads to fun discussions between all his many docs but in the end the treatment ends up causing the EIM's to disappear .


----------



## Clash

No pill cam was done
None of the tests done showed results that would warrant it so I doubt insurance would cover it. I guess if the joint pain persisted and the Rheumy checked everything out to no avail then maybe we could do the pill cam then. But I think we'd still be hard pressed on getting it covered since C isn't having any "GI symptoms".

I  was reading some info about Polyarticular peripheral arthropathy, it doesn't run parallel to disease it seems and isn't a swelling of joints, I'm going to research it more, I think.


----------



## Marni's mom

I was surprised that they gave Marni hydrocodone at the hospital and sent her home with a Rx for it because the Tyelonol with codeine was working.  I hate giving her either of those, and I really fear her developing a dependency on them.  However, when she's in pain, I will do anything to make her comfortable. 

She also suffers joint pain and can only last about 1 1/2 hours at a mall or fair, etc before she starts hurting and complaining.  We are actually getting ready to buy a transport chair to keep in the car so when we're in places that require a lot of walking, we won't be slowed down by her pain and complaints.  She's excited about it because she won't have to "fear" going out for long periods of time anymore.  I don't love the idea, but again, if it makes her more comfortable, then I'll do it.  It's Rodeo time in Houston which means a fair bigger than most state fairs.  They look forward to it so much each year, and now Marni can enjoy it for the full 14 hour day!   
That is assuming she's feeling better by the end of the week.


----------



## Hope345

I am sorry he is dealing with such pain.   Hopefully it is his body trying to grow and you will start to see it.  I always worry when B complains of pain in her body.  We know this disease can cause so much inflammation in their bodies.

As moms it is our job to think of everything and try to prevent future pain and problems.  I am always relieved when it is something natural  

She still has a limited time of exerting herself, but when our kids finally reach remission, they can build up their endurance again.    Which hopefully will be soon for all of them!!!

best to you and C.
julie


----------



## Johnnysmom

Johnny had pain in both knees.  It was so bad last year he couldn't climb the stairs and took the entire season off of basketball.  We found a great orthopedic while we were waiting to get into a rheumatologist.  He was diagnosed with Bilateral Chrondromalcia knee.  The Ortho said it was made severe because he had taken prednisone, which weakened his muscles and when he started to grown the bone grew before the ligaments and exacerbated it.  Our GI had the same condition as a teenager and examined Johnny and confirmed that was what caused his pain.  He did 3 months of physical therapy and couldn't do any running, stairs, jumping etc. for 2 months.  Our GI said his took about 18 months to go away and that is about what we are seeing.  Johnny rarely has pain now and he is at about 16 months.  

Not sure if this is at all helpful but I know that we were sure that Johnny's knee pain was related to his crohn's and it was not.  The Prednisone made it worse but the two were not related. 

I hope you find some answers soon!  (((((Hugs))))


----------



## Jmrogers4

Hope you find answers soon to the pain.
Hope she feels well enough to enjoy a full day at the fair.  sounds like fun.


----------



## Clash

JohnnysMom, thanks I will definitely look into this. When C used to complain about joint pain during "known CD flares" it was generally his back that he complained the worst about then knees. Nothing about this last episode reminded me or him of a CD flare and the tests seem to prove that out but I guess we will know more when we talk with GI.

I'm wondering now about the price of a HACA antibodies test and if it changes if the blood was drawn while in the hospital? I'm fairly sure insurance won't cover it but I'm having a hard time breaking the amounts on the hospital bill down to the individual items. Hmmm...where to start?


----------



## my little penguin

ASk for an itemized bill-
They have to give you one- just call billing dept


----------



## my little penguin

FWIW HACA/remicade level - Anser IFX  test done by promethius is about $2500
DOnt' ask me how I know:mad2:


----------



## Clash

MLP, just looking online, I saw where in August of 2012 Prometheus(I assume) discontinued the HACA antibodies(ELISA) and started using the one you mention, Anser IFX type. Can I assume then that this is the test that was used when checking C's antibodies?


----------



## my little penguin

As far as I know it is patented and the only place doing it in the country.


----------



## my little penguin

Anser IFx is a combo test Haca and remi level all in one.


----------



## Clash

Okay, I just wanted to make sure that C had the anser IFX and not the ELISA but if Prometheus discontinued ELISA the anser IFX would be the only one that tests Human Anti Chimeric Antibodies. I read IFX was deemed more accurate than ELISA and that is why Prometheus discontinued ELISA.


----------



## my little penguin

One thing else to keep in mind- if he had any remi left in his system then the HACA are always negative-
if there was no remi in the system then it can go either way for the HACA.


----------



## Clash

Wait, can you explain that to me in relation to time frame from last infusion? Are you saying that if he had just gotten Remicade the week before then the HACA would be less accurate unless his body had burned through all the Remicade in a week? Or are you saying if there is Remicade left in his system when tested then that mean he IS neg for HACA?


----------



## Clash

my little penguin, did you notice my post above? I've been trying to research it but apparently not typing the appropriate key words.

Well, C only has 4 days left til infusion, not counting today. He has been doing really well. There has been some weight gain, he lost 2lbs right after discharge but has since gained 6 so we are about where we were at before the crazy episode that necessitated the hospital stay. 

Energy has been good,
appetite decent,
normal bms
and no joint pain

So who knows what the heck all that stuff was but it has passed. 
Oddly enough he was making it only 5 weeks between infusions 
but this latest one is almost 6 weeks out, no symptoms yet(touch wood)

He is approaching the 6 month mark with MTX, wondering if GI is going to change or address that. Also, wondering if he gained enough weight to satisfy the GI...Monday will tell the tale.

Hope everyone is doing well.


----------



## Tesscorm

Great post!!!! :thumright:

So glad to hear everything's been good! :banana:


----------



## Jmrogers4

Glad he is feeling better and hope it continues on (sitting on a wooden chair so hopefully not jinxing anything)  Hope Monday appt. goes well.


----------



## Hope345

Clash,

that is so good to hear!!! love it.


----------



## upsetmom

Glad to hear that he's feeling better.


----------



## Farmwife

Ya for better health!


----------



## my little penguin

http://anserifx.com/PDF/AnserIFX-Monograph.pdf

http://www.medscape.com/viewarticle/734584_5

might answer your question-
there was a short three page article but I dont have time tot find it now-
crazy life


----------



## Clash

Thank you, My Little Penguin! I'll get to reading up.


----------



## my little penguin

> WHAT IS THE RELATIONSHIP BETWEEN
> ANTI-DRUG ANTIBODIES AND TROUGH
> LEVELS OF DRUG?
> A relationship between anti-drug antibodies and
> trough levels of drug is implied by the definition of
> antibody detection: patients classified as being without
> detectable antibodies include both those with a double
> negative test (neither detectable antibody nor
> detectable drug) and single negative tests (no antibody,
> but detectable drug). In the latter case, the test result is
> properly described as inconclusive. Since detectable
> drug interferes with all antibody assays.


from:
http://www.practicalgastro.com/pdf/October10/CassinottiArticle.pdf

found it


----------



## Clash

MLP, you are awesome!!:headbang:


----------



## Clash

C still feels good, infusion is on Monday, but the bms are increasing. He has had 5 today and there was yellow liquid and mucus in them, and they looked like FroYo poops.

I am preparing my list of questions for the GI, he is going to hate to see me coming.

1. Why are was he so happy his colon looked pretty good?(he wasn't the GI that did the first scope but he has the pics) The first GI explained C's CD was in his TI and that his colon looked pristine.

2. How do you know narrowing at ICV isn't inflammation and if not inflammation then is it scar tissue? (PA said they were thrilled not to find granulomas in biopsies because if there had been then the inflammation would be more difficult to effectively treat with the meds and surgery might be required...explain please)

3. The in-service GI(one of the GI's in C's GI's group) said they were pleased it wasn't inflammation, the MRE looked really good, the FC level was only 300(down from 1700 several months ago) and biopsies looked good. If there isn't inflammation then does it just crop up right before the next infusion when I start seeing multiple unformed bms with mucous(sometimes blood)?

4. Is the MTX doing anything or is the Remi doing it's job if we only make a little over 5 weeks before we start seeing symptoms? Is the risk benefit still worth it if before MTX we made it about 5 weeks and now we make it a little over 5 weeks? Is this supposed to improve over time?(almost 6 mos. on MTX)

5. Finally, what was the point of the HACA test if C had just the week before had a Remicade infusion? From the links I've read(thanks MLP) and will print out and take it will be negative if there is Remi in the system.

6. Is there any way his office can start serving wine for the drive home because I will no doubt already be overwelmed and my mind swirling with all the information he gives that has no relation to the questions I ask but come with really neat charts and graphs!

Oh and how is it that I didn't know that I'm not supposed to be touching the MTX with my hands...is that even for the 25mg dose...cause I'm freaking out a bit now!!


----------



## my little penguin

touching the MTX is only a big deal if your pregnant otherwise-:whistleinnocently: - we just ignored ( at least for 6-mp warnings since I was cutting tablets :smile

:eek2: - WHAT about granulomas in the TI means surgery- and harder to treat
NO ONE mentioned this-
DS had multiple granulomas in his TI and caecum.:ybatty:

MAybe that's why he didn't "feel" better until we started remicade-
It would explain a lot.:ymad:


----------



## Clash

At the hospital the PA of the GI group was the most explanatory out of the in-service GI's(1 the first admit different the 2nd admit). The 1st GI talked entirely too fast to understand her and she spent most of the time in doctor speak land, the second was abrupt and wouldn't answer direct questions but rather only pass along what he and C's GI discussed on the phone. I need to learn to be more forthright with wanting answers.

The PA explained the day before we left that the biopsies looked pretty good and that they were thoroughly pleased to not find granulomas. I asked was there inflammation at the ICV and she said I don't feel there is but finding granulomas would've been concerning because they are harder to treat with meds and surgery has to be considered.

It was from her that I really got the feeling the reason we were in for so long(besides them waiting for the biopsies to come back before releasing him) was due to what she called C's sub optimal weight.


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## Hope345

Great questions clash.
I am wondering about the Remicade myself....    this time around, even after doubling, it has not worked... let me know what his GI says.


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## Clash

Hope345, I know...it is confusing. During the loading doses Remicade was magical, we really saw a difference overnight. But since all the "not making it to the next infusion" started I have never known if all of the adjustments are actually doing anything.


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## Tesscorm

Great questions!!! Don't forget to post the answers!

But, now I'm wondering about granulomas...  aren't granulomas just a small area, like a sore?  And, if yes, then could a biopsy result saying 'no granulomas' just mean that they missed the 'spot'?  And, again, if yes, wouldn't this make biopsy results a bit unreliable relating to granulomas?

Stephen's first biopsy report (at diagnosis) indicated a 'well formed granuloma' in his stomach but his recent scope said no stomach granulomas.  His first scope had three biopsies in his stomach, his recent had only one stomach biopsy.

???


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## Clash

Tesscorm, you are thinking along the same lines I am. They were unable to push through the ICV but he did get the "forceps"(or whatever) through to take blind biopsies and alot of them, he had over 20 biopsies in all. But if they were blind were there enough to ensure they just didn't get the right area?

I will post the answers...if I keep him on track long enough to get them HA! The guy is actually really funny and we always leave in a good mood but it is a little like twilight sedation...a little while later you are asking "What just happened?"


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## parentnj

good luck and I hope you get straight answers!


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## Tesscorm

Clash said:


> we always leave in a good mood but it is a little like twilight sedation...a little while later you are asking "What just happened?"


:lol:  Sorry, Clash, but I think that's the wine!:yrolleyes:

It was either Ryan's or Jack's mom who mentioned giving the GI a copy of their questions.  I did it last time and it was helpful.  BUT, don't give it at the beginning of the interview...  first off, you don't want to scare him!:hallo3: but, also, I wanted him to say all he wanted without feeling he had to rush because he had to get through my questions.  Towards the end, as I still had a couple of unanswered questions, I just said 'oh, I have a couple more questions but I made an extra copy, _(as I casually slid the paper to him)_  ...thought it might be simpler'  :ylol:  

Trust me, I do NOT think I am a pushy person :redface: (if I can do this, you can!)...  at the end of the day, as much as I don't want to be 'rude', I won't lose sleep over what he thinks or says of me after I leave his office but I will lose sleep if I don't have an answer!:confused2:


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## my little penguin

Tess 
Same here I created a one page form for the Gi
I give him at every visit
Docments dates of blood, vomiting, joint pain etc 
Then  7-10 bullets on history since last visit
Plus questions 1-4 tops
And any prescription refills

I also give another sheet typed
With all current meds with dose and started date
Past meds with dose and stop date
And current conditions - so all specialists are on the same page
This works well for unplanned ER visits


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## Tesscorm

You mean I shouldn't be handing him the binder with dividers for questions, lab results and recent trends, clinical trials of interest, etc. on differently coloured pages for easy identification! :lol:

But, yes, I do keep it to just a few questions and reminders for prescriptions! :thumright:


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## Clash

:ylol: Ok Ok Ok I think I have a plan...what if I give the DOC the wine before I hand him the sheet of questions...:hallo3:


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## my little penguin

:lol2:
Too funny


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## Tesscorm

OMG, that would be too funny...  pull out the wine, hand him the questions and tell him to read through while you pop the cork and pour the wine!


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## Tesscorm

For those interested, pictures of granulomas in the large intestine...  (if it's not in english, there's a button on the top to select the language)

http://www.solunetti.fi/en/patologia/crohnin_tauti_40x/


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## Dexky

I think I may use the questionnaire method next time.  But I'm going to leave blank space between the questions and ask for written answers.  I like our GI but speaking to people is not one of his strong suits.


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## Farmwife

That's a great idea.....

Get the GI drunk BEFORE he makes medical decisions.:yfaint::lol2:


Oh and MLP, I still think you walk around in a white lab coat.:cool2:

Clash
I hope all goes well at the appointment.:ghug:


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## DustyKat

I will be interested to see the explanation about granuloma's Clash. I was under the impression that the presence of granulomas made no difference to the clinical outcome. 

Dusty.


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## Johnnysmom

I am interested to hear about the granuloma's as well, Johnny had some in several areas.  Please let us know the answers you get.

Great questions!!


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## Clash

I will definitely ask about the granulomas but so I don't sound like a complete DA they aren't just looking for granulomas when they biopsy right, I mean aren't they looking for inflammation at the cellular level?


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## my little penguin

Correct - they are looking at cellular changes - particularly acute or chronic inflammation.
There are many things that change in the cells to indicated the type of inflammation.
There can also be many types of granulomas .
Ones specific to Ibd are epithloid non caesating granulomas.
Not all granulomas are created equal.
From what I read the granulomas indicated that there has been chronic inflammation for a long period of time.
But only 30-40% have granulomas found on biopsies.
The number goes up in kids of course.


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## my little penguin

> Terminal ileitis is not always Crohns disease
> 
> Daniela Bojica, Srdjan Markovicb
> 
> University of Belgrade, Serbia
> 
> Abstract
> 
> Chronic inflammation in the terminal ileum (TI) suggests a cause for the patients symptoms, especially when the clinical suspicion is Crohns disease (CD). Clinic, laboratory, endoscopic, histopathological evaluation of patients is required for the diagnosis of CD. The most frequent localization of CD is the TI. There are many other diseases affecting the TI. Non-steroidal anti-inflammatory drug (NSAID) intake as well as other pathological conditions such as lymphoid hyperplasia, intestinal infections, lymphoma, infections and ulcerative colitis (UC) can mimic CD terminal ileitis.
> 
> In this article the authors discuss these conditions, firstly in terms of differential diagnosis, and point out the facts that the clinicians must consider when they have a patient with terminal ileitis. Misdiagnosis of CD may be harmful to these patients because of inadequate response to therapy and occasionally an unnecessary operation may be performed. At the same time, the patients require appropriate treatment for their condition.


From:

http://www.annalsgastro.gr/index.php/annalsgastro/article/view/1004/742


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## Clash

Well maybe there in lies the answer and she meant the presence of granuloma only affect treatment in that they are proof of long standing chronic inflammation and since C had been treated with the big guns for a year if they had still found granulomas then surgery might be in order? I'll ask the GI what he thinks the PA meant by her comment.


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## Clash

In response to your posting about ruling out other things since chronic inflammation to the TI doesn't justmmean crohns. I remember the diagnosing GI's nurse said we had to wait for biopsies to come back to ensure CD. I asked what else could it be and she said lymphoma, I almost hit the floor! I was so happy to hear CD 4 days later, even though she said odds were long that it was lymphoma.


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## jmckinley

Good luck with the GI visit. If the GI has a good sense of humor, maybe you just cut the questions into strips and make him draw them out of a hat one at a time!  :ylol:  Might as well have some fun with it!


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## Hope345

This needs to be copied and pasted into a new thread: dealing with GI's.

so funny!!!

My daughters GI scolded me about sending questions on different days.  So I saved them up and sent 10 at once.  you know how many she answered?  one.    

We have such a short time with her GI.  I feel like we spend the first 15 minutes bringing her up to date as to what type of Crohns she has, what meds, last treatments, what treatments... which should all be in her chart, and then she will start talking about the scenery.   I am all about being casual, but when she tries to wrap it up quickly after the scenery talk (I mean the pictures on HER walls in the office), I leave a little dumbfounded sometimes...

We meet in two weeks and I am bringing my list, wine and WHINE  lol   

"keep up the good work"   is not going to cut it this time!!

Let us know how the list works and hope you get the answers you need Clash.


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## Marni's mom

Clash, thanks for that list of questions.  Seriously, it sounds like your recent hospital experience is very similar to ours in what we're trying to accomplish and figure out.
I'm waiting for the in-service doc and the fellow to come by in the morning so we can talk this out.  My husband has been here with Marni while I worked on Friday and today, so I wasn't privy to their conversations.  Thanks to you, I'm going to have a bunch of new questions for them.  I'm sure they'll be thrilled.  LOL.
Stacey


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## Clash

Yeah we get 45 mins to an hour with the guy, but like you said the first part is spent catching him up on the specifics, then he spends a good 5 minutes wheedling info out of C which goes one of two ways:

I'm fine, good, uh-huh
or
like that scene from The Goonies where the Fratelli Brothers have Chunk tied up trying to get him to talk and he spills every secret he has had since 5th grade!!!

C will be all "There's this itch behind my knee and when I sneeze I feel a pull in my ankle and sometimes when I stretch I get this tickle in my throat and I don't know if it is related but my big toe is red when I take my shoes off."!!

Then I have my question time, I ask the first question and we spend five minutes of him bragging(Thanks forum and MLP) on me and how I would know that there would be a correlation between A and B and how he is just dumbfounded by what I seem to understand but do I know the mechanism behind that cytokine producing blah blah blah. Then out come the charts or he just draws them on the back of C's folder(I wonder how many folders they have to replace as long as he is wielding a pen)...

so I generally get one question answered too...but I've learned the secret weapon. What I don't get around to I call a couple of days later and ask the GI nurse, she calls the doc gets the answers and all is right and wine-filled in my world once again..

Seriously? "When I sneeze I feel a pull at my ankle?" Help a Momma out here son!!


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## Marni's mom

Hope345 said:


> We have such a short time with her GI.  I feel like we spend the first 15 minutes bringing her up to date as to what type of Crohns she has, what meds, last treatments, what treatments... which should all be in her chart, Clash.


AMEN sista!  Our "new" GI as of this past year but in the same group as our "old" one doesn't ask, but the old one used to start with, "What meds is she on now?"  And I would answer with, "Shouldn't that be in the record you're looking at on the computer right now?"  and I follow with, "The ONLY meds she's on are the ones YOU'VE prescribed for her."

Same when the PA would take Marni back to weigh and get vitals before putting her in an exam room.  "Is she on any meds?"  WHAT?!@?!!?  Really?  Uh, YES!  Look at the damn list, dumbass!

Okay, I don't say that part, but I sure think it.  LOL


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## Hope345

Clash said:


> Seriously? "When I sneeze I feel a pull at my ankle?" Help a Momma out here son!!


That made my night.


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## Dexky

Marni's mom said:


> Look at the damn list, dumbass!
> 
> Okay, I don't say that part, but I sure think it.  LOL


I love Texas!!  But I think you should say it!


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## Niks

Clash said:


> C will be all "There's this itch behind my knee and when I sneeze I feel a pull in my ankle and sometimes when I stretch I get this tickle in my throat and I don't know if it is related but my big toe is red when I take my shoes off."!


Hahaha really made me laugh!!! :rof::rof::rof::rof::rof:

I read it to Jaime!  She straight faced said 'Mum I get that sometimes!'  LOL I laughed so much, she was just looking at me like I'd lost the plot :lol:


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## Clash

Ok so one off day then yesterday seemed good only 1 bm or so he says. He had plans for the night so that could've skewed his reporting plus I didn't get a look at the bm, he said it was good but again...teenagers.


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## Tesscorm

Your posts above made me laugh!!!  Hmmm, I'll have to ask Stephen about red big toes! 

Maybe I missed it, but when is your GI apptmt?


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## Clash

We go Monday for gi appt then Remicade right after.


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## Kimberly27

Clash said:


> He had plans for the night so that could've skewed his reporting plus I didn't get a look at the bm, he said it was good but again...teenagers.


:rof:  :rof:

Hilarious!  When I first asked Reed, my 17 year old, if I could see his poop, he flat out refused.  Quote: "I have to draw the line, Mom.  And this is it!"  

LOL

Kimberly


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## jmckinley

Ryan gives the same off the wall or vague responses to the GI. Mostly, they are barely more than a cave man grunt!  :facepalm:


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## Kimberly27

I would think pediatricians would understand this about teenage boys!  

At one of Reed's last appointments, his doctor and PA asked how Reed was doing.   "Fine." That was it.  There was a long silence in the room as my husband and I and the medical staff were waiting for him to elaborate.  We waited and waited.  Finally I broke the silence by saying, "Oh, please!  You've been complaining everyday for a month and now everything's fine?"

The PA was great.  Her questions were so specific, and Reed has to answer yes or no to each and every one of them.  She grilled him!  I actually learned a lot!  I feel like this interrogation technique is in her bag of tricks, and she pulls out the third degree tactic on kids like Reed.

LOL!  Teenaged boys!  

At UCSF the ped. GI will see the kids until they are 24.  Maybe they realize the adult GI's might not get young adults the way they do.

Kimberly


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## kimmidwife

I thought it was just my daughter LOL!
Lately caitlyn refuses to let me see her BM 's as well. She is comming to that age when everything embarrasses her especially her parents!


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## my little penguin

WE get"fine" here as well or what is happening right that second not the previous 7weeks or even five days.:ybatty:

but  he is only 9.
WHen the doc asked about his brother of course he got the long winded version:yrolleyes:


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## Tesscorm

Hope all went well today, at GI and infusion! :hug:


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## Clash

Thanks just got online to update:

The appointment went well, I have a copy of the MRE results and we did have an in depth conversation about it all.

I got the copy of MRE at the end of the convo and it has my mind spinning a bit.
But first a recap.

GI says it wasn't that there is no inflammation, there is inflammation at the ICV but he feels it isn't all inflammation but inflammation/scar tissue in that area.

I printed out MLP's little paragraph with link about the HACA levels and he basically agreed that the HACA levels test was probably a wash. He mentioned C's Remicade level(6 days after infusion was 34) 

He did some of that discussion/wonder out loud if may we should drop Remicade and stay on MTX and see how he does
If he doesn't do well we could add one of the other biologics or do surgery. 
He says C is a good surgical candidate because he doesn't have full colonic involvement with his CD and there is no proximal dialation
so after resecting the part that is narrowed(ICV) the ends sewn back together would be the same size and there would be no tapering involved.

Note I said he said there wasn't full colonic involvement;
The MRE Impression states 
Thickening and enhancement of the wall ileocecal valve.
Mild enhancement wall of ascending colon
Trace enhancement right perianal soft tissues of uncertain clinical significance. 

He wants to take some time go over all the stuff and in the mean time C got this remicade infusion and scheduled the next one 6 weeks out. He doesn't want to go back to five he said if C can't make it 6 then back to the drawing board and if symptoms arise before this 6 weeks is up to contact him.


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## Tesscorm

It sounds like you were able to discuss quite a bit with the GI.  As C is already on MTX, I'm confused by the reasoning of dropping remi and just staying on MTX - I guess he's wondering if the remi is doing anything at all??  But, it seems to be doing 'something' since you say C's symptoms begin to appear a bit before his next remi infusion...

Did you discuss the joint pain?  Does he believe it's related to the inflammation in the ICV?


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## Clash

I think the object is to move to another biologic or surgery but no harm in going on with MTX if symptoms pop up then we'll have the next biologic or surgery plan ready but in the end he said we will stay on Remicade if he can make it 6 weeks if he doesn't then we have to come up with something else.

This past 6 weeks he made it all the way to this last Friday(three days before infusion) he had 5-7 bms with mucus but everything was fine since then, back to 1 bm, firm, no mucus.

Oh he had an idea of what the PA may have meant by the granulomas, he said there are several studies that indicated the presence of granulomas may indicate more aggressive disease and/or relate to more surgical intervention but that there are other studies that do not show a correlation. So....maybe that is where she was coming from.


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## Clash

Ugghh...since C hasn't had the joint pain I didn't include it in my questions and completely forgot! Ughhh...I'll have to call GI nurse.


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## my little penguin

btdt tooo many times


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## Clash

But back to what I was going to ask, "What's everyone's impression of the MRE summary?"

It seems the combo of MTX+Remicade May not be the answer and though we will still be utilizing it forvthe time being, C's GI is always going on,about full mucosal healing being the goal so I do smell change in the air.


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## Clash

Sorry MLP we posted at the same time. Yeah I was so proud of getting each question answered until Tesscorm busted my bubble and reminded me about the joint pain! I even had the summary since last visit on hand along with the questions so it should've rang a bell when I went over it!


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## Sascot

Sounds like a good appointment.  Does sound like the MRE shows more involvement than the GI mentioned.  However you did say he was going to look at it in more depth :smile:.  Well done for getting most of your questions answered, I think forgetting one thing is pretty good.  I usually come out having discussed stuff totally different which then wipes all my questions out of my mind and end up having to phone the IBD nurse and ask all the original ones :ybatty:.   Last time I jokingly said to the GI "I should write a list" and he says very seriously "yes you should"!  Well that was me told :yrolleyes:


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## Tesscorm

Sorry Clash ... hate that I burst a bubble! 

Rather than just looking at this MRE, I would think what's relevant is how it compares to the last one.  This one confirms inflammation/narrowing in the ICV, some in the ascending colon and possibly in the perianal area.  Did his last MRE show inflammation in the same areas?  Was narrowing noted in the last MRE or proximal dilation?

I think you and I discussed proximal dilation???  That's when the area just before the narrowing bulges out because everything is getting backed up due to the narrowing.  My 'guess' is that if there is no proximal dilation, the narrowing is not sufficient to slow down the progression of food.  Also, and this is total conjecture on my part :hallo3: but... I believe scar tissue has no 'give' (flexibility), which might be more likely to lead to proximal dilation.  If narrowing is due to inflammation and if inflamed tissue is still flexible, this may NOT lead to proximal dilation as food/matter can still pass through, however, perhaps it is the 'stretching' of the inflamed area that causes pain. ???  But, this is just me thinking out loud, not something I've ever discussed with the GI nor read about...   (but, hmmm, unless someone else knows if this is accurate...   another question to add to my list! :thumright

:ghug:


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## Clash

Sascot, you sound just like me! It has happened to me every time but this one, I was so proud I got all the ques. answered! Can't believe I forgot joint pain but I swear it is truly out of sight out of mind so if he's not complaining then I forget about it.

Tesscorm, C hasn't had another MRE this was his first. The imaging he had at dx was an MRI, I know it must not have been as in depth either because it took only 30 minutes at most the MRE to much longer. I was told at the time the MRI showed thickening in the TI. There was no mentioning of the colon. I'm not sure of the comparison of the two except the first colonoscopy the dx GI could get through the ICV and this colonoscopy the peds GI could not.

The GI said that he didn't believe the narrowing he saw on the scope and MRE was causing the issues
 C sometimes has with filling up too fast or regurgitating the last bite that it was more likely due to acid reflux or mild gastritis and back on the nexium we must go.

I was surprised about the mention of enhancement in ascending colon since our discussion revolved around C being a good surgical candidate due to him not have full colonic involvement but I suppose though his full colon isn't involved the MRE picked up something. 

And I know it states uncertain clinical significance about the perianal tissue but of course that is the one I'm most curious about! Thanks Tesscorm, I appreciate your two cents, this never seems to be black and white.


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## CarolinAlaska

I don't know how I didn't read this for the past 3 days, but I missed a lot.  Took me forever to read it all!  I'm glad you got answers, although it seems you have more questions now from your answers, but that happens, doesn't it?

I would have the same questions about the colonic involvement - what did the colonoscopy show?  Did he have one of these recently?


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## Clash

Carol, he had a colonoscopy the day the before the MRE and visually his colon looked good, the GI was unable to get the camera through the ileocecal valve but got the forceps through to take biopsies.

C had his remicade on Monday, he was already feeling good before the infusion so maybe the issues the Friday before were a fluke. So I just have my fingers crossed we make it 6 weeks.


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## CarolinAlaska

I found it odd that my dd had her colonoscopy with only one mildly inflamed area, then had her video capsule 9 days later and it showed inflammation throughout the small bowel AND numerous ulcers throughout the colon.  I chalked it up to two clean outs in 9 days, but it was enough to convince the doc of her crohn's.  I don't know what to think when the results vary so much a day a part...


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## Tesscorm

Carole, remember that scopes will not show much inflammation in the small bowel...  at best, GIs can usually just get into the small bowel a small distance.  And, I believe (could be wrong??) granulomas can only be found through biopsy (not visually seen).   But, I would wonder why the ulcers were found by the pillcam and not the scope???  I would have thought that ulcers would have been seen by the scope.  Perhaps you're right re the two clean-outs?


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## Clash

I think the difference in C's case may be I don't have the results of the scope just the MRE. I only have what the GI told me right after the scope and then what we went over in his office on Monday. Since CD can be throughout the bowel wall compared to UC that deals with the first layer I wondered if visually in the colon all looks good but when doing the MRE it picked up a tiny bit of inflammation within the bowel wall of the ascending colon?

What I posted above was the impression this is the more in detail findings:

Thickening of bowel wall ileocecal valve is demonstrated with mildly increased enhancement.

Subtle increased enhancement is identified within the wall of the acsending colon without significant  bowel wall thickening. No stricture or fistula identified. No abscess seen.

Navigator images demonstrate usual peristalsis.

Subtle enhancement is present along the right perianal soft tissues best seen on image 10 of series 51 of uncertain signifcance. No perianal fistula is identified.


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## Tesscorm

That makes a lot of sense Clash... I'd never thought of it that way.


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## Clash

Makes sense to me too, Tesscorm but I wouldn't start thinking of it that way permanently because who knows if I am right!!!! HA!

Also the bit about "Subtle enhancement is present along the right perianal soft tissues best seen on image 10" I wonder if this is refering to his skin tag? I'm not very knowledgeable about what constitutes the "perianal area".


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## Tesscorm

Sorry, can't help you with that as it's never been an issue with Stephen.


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## Crohn's Mom

Just catching up here Clash.  I'm glad you have some answers, but sorry that it leaves you with even more.  Funny how that happens huh! :ybatty:

Tess, for some reason I thought that granulomas could be visually seen, not just microscopic ?  I am out of state so I can't get my records out for Gab, but I think I remember (pre biopsy results) after Gab's colonoscopy, when she was 9 years old, her doctor saying that Gab has granulomas throughout her entire digestive tract and that's what made her think she possibly had Crohn's back then but didn't want to "label" her.  (also one of the major reasons why I can't shake the guilt of not pursuing an official diagnosis then ~ but thats an entirely different novel I need to write :ybatty: ).  I have copies of all the doctors notes from back then so when I get back home I will look it up.  Maybe it was said after the biopsies came in and I'm just remembering wrong ?  Who knows ! :ylol:


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## my little penguin

Granulomas are microscopic cluster of specific type of cells.
You wouldn't be able to tell visually other than redness or ulcers but 
The doc wouldn't know by looking- need a microscope for that one .


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## Clash

C showed no granulomas at the site of the ICV and I assume with all of the other biopsies. The PA was really happy about that. I am assuming C could've had ulcerations or visible inflammation beyond the ICV but since the GI was unable to get the camera through the ICV then no definitive answer although the GI did say there was some inflammation present so again I assume that the blind biopsies showed inflammation and the MRE confirmed this with the finding of "enhancement".

Anywho...CD sucks!


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## Crohn's Mom

Thanks MLP, it must have been after the biopsies than.  I was trying to remember way back to 11 years ago :ybatty:




> Anywho...CD sucks!


Amen to that one ! :heart:


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## my little penguin

Get a copy of the scope report 
We keep copies of all tests including scopes
Makes transfer to adult land easier


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## Clash

Yeah, when he said let me get you copies I assumed he meant of the scope too. I plan on getting it sent to our GP and picking up a copy there.

So his labwork just came back and all looks normal, I still have to get the report and look at it since the sub-nurse accidentally called the Hubs instead of me. He's learning though because he told her she needed to go over each test and tell him each one was good otherwise he'd hear it when he called me!

She said Vit D was still low, what the heck, he takes two a day of the biotech brand and 3 equals 5000 so he is getting like 1666 maybe I should up it to 3.


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## my little penguin

here is the problem- you can add a ton of vitamin D but if there is on going inflammation- it inhibits the absorption of Vit D.
at least according to one study-
so while adding is nice it is not stopping the cause of the low Vit D KWIM


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## Clash

Yeah, that is what I am thinking too. So hunky dory tests and yet we know there is still something going on because I can't get his Vit D up. Although I guess scar tissue would affect absorption just as much as inflammation.


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## my little penguin

Also asthma allergies etc can also cause inflammation and low vit d
So it could be a combo thing


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## Clash

Great, a whole trifecta of issues to affect Vitamin D!!! I've thought of letting him out in the sun for 30 minutes w/o sunscreen but it just freaks me out with the MTX and Remicade.


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## Tesscorm

Stephen uses a liquid vitamin D in an oil based liquid.  Is that easier to absorb opposed to capsules?  I think that was the reason I began buying the liquid version.  Very inexpensive and available at any health food store.


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## Clash

Tesscorm, do you know if this type has all the cofactors that go along with Vit D like Vit K and such? I've thought about looking into them just always forget when I'm at the store.

Also, I'm not so naive to think C remembers to put sunscreen on when I'm not around, it's the same boy that when  he was young would forget to take baths, brush teeth, hair or any other hygenic process if I wasn't around!


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## Tesscorm

Stephen takes Natural Factors Vit. D3 drops.  Each drop contains 1000 IU Vit D3.  The only other ingredients are certified organic extra virgin olive oil, flaxseed oil and vitamin E.  But, Stephen takes it just before bed, when he begins his EN formula, which includes Vit K plus all the other vitamins/minerals in the formula.


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## Clash

Ok thanks I'll look into it and see what we have around here or possible I could just order offline.


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