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C winter update-frustrated

Clash

Clash

Thanks so much for dropping by with your experience Mehita! I was hoping you would. I may have a thousand questions once we've talked with GI again and surgeon.

And on another note I dropped by the medical supply place and they were not very optimistic about our ins covering the EN. They haven't gotten the GI info yet and were just going on past experience. The info from GI was supposedly faxed shortly after I left. I have my fingers crossed!
 
Mehita

Mehita

Are your GI and surgeon in the same hospital? I believe you can request that they sit down and meet together and come back to you with their recommendation. There is an official name for the meeting, but it escapes me right now.
 
Clash

Clash

Hmmm....they are at the same hospital. I'll have to ask about that, I guess I assumed they had already discussed it from what the GI said but then again it all seems a blur. I'll bring it up, thanks!
 
Clash

Clash

We are headed to the ER at the children's hospital. They are going to start EN there, he might be admitted, not sure yet. I will update when I can.

Maya142, the px I got from the ER for the costochonsritis is anaprox. I was supposed to follow up with gp tomorrow at 10am but had to cancel since I may still be in ATL with C. I've left a message with my GP's med asst about what is going on so doc may call me. Is anaprox good for this or is there a better med I should ask for?
 
Maya142

Maya142

Moderator
Staff member
With NSAIDs it really just depends on what you can tolerate and what works for you. Anaprox (Naproxen) made both my daughters nauseous and after much trial and error, we found that my younger one could take Mobic daily and the older one takes Celebrex. They both take nsaids with a Prevacid to protect their stomachs.
Poor C, hope the ER can make him more comfortable!
 
Clash

Clash

I hope they can figure something out at ER. They were initially going to do a straight admit but then called back and said GI would be waiting go through ER, so I'm not sure what to expect.

I've taken mobic before for something musculoskeletal though I can't remember what. And also celebrex for a ganglion cyst, it helped the cyst but made my stomach upset. Still, I'll throw them out there to the GP because right now I can't take a deep reath without stabbing pain. It seems to be progressing faster than it did yesterday. Thanks for the info.
 
Jmrogers4

Jmrogers4

Oh Goodness, so much going on... Hope things move/improve quickly for C and you can take care of yourself as well. Sending loads of hugs :ghug: and hoping for things to quiet down for you both.
 
Clash

Clash

Thanks so much, Jmrogers4. I am lying down with a heating pad waiting on the hubby to arrive so we can head to ATL. I was going to drive but this chest pain is ridiculous! I swear my health issues have the worst timing! It didn't dawn on me til I got home and read the release papers that costochondritis was an ongoing thing, the toradol had taken the pain away completely so I was thinking all is well. About 1am, C woke me up feeling bad and when I sat up, oh my, the pain was back! C and I are quite the pair curled up in little balls on his bed trying to comfort each other. He said "Mom, put together I don't think we'd make a whole person." Poor thing, I wish I could take on his stuff as well.
 
Maya142

Maya142

Moderator
Staff member
Clash, my older daughter was eventually given prednisone when her costochondritis got really bad. Her other joints hurt too but not as much as her ribs and chest. The pred took care of it relatively quickly.
Hope C starts feeling better soon! Sending hugs:ghug:
 
Clash

Clash

Thanks, we are set up in a room in the ER waiting for our blood tests to come back so we can go on to our room. They will show him how to do everything with EN and keep him for a few days to monitor. They are going to give him a dose of solumedrol for the joint pain. The on call asked had we tried 6MP and said that might be something to try with remicade. He and his PA said from looking at the ft scan there was a stricture.

Hubby has gone to get a room and we are just waiting for transfer to GI floor. The nurses and docs have been awesome and things have moved so quickly. Since the GI called ahead we didn't wait and went straight through triage to room. I'll update later.
 
Clash

Clash

The anaprox really has knocked the edge off the chest pain. It's still there but not tovthe point where breathing hurt.

C is hooked up to the pump and receiving EN. He even allowed a training nurse to do the process. He was a champ at it.
 
Tesscorm

Tesscorm

Moderator
Staff member
I'm sorry he's had to be admitted again but this will, hopefully, get him feeling well enough to get home soon!

And, I'm glad your pain has lessened too! Will be thinking of you guys! :ghug:
 
Maya142

Maya142

Moderator
Staff member
Good for C, I'm so impressed! My daughter won't even let us mention an ng tube!
Hopefully the doctors will come up with a plan for him.
Glad you're feeling better! My girls love their heating pads, don't know if you can get one in the hospital.
 
Clash

Clash

Tesscorm, thanks. Just the fluids he got in the ER made a difference, it brought some color back.

Maya142, I brought my heating pad with me! Ha
 
Clash

Clash

Ok guys, this is silly and illogical and I know it but here it is. The on call GI(another partner in the group, our GI starts his inservice on Friday) has suggested a switch to 6mp, ai know there are plenty of kids doing well on it but it is my scary drug, funny huh since my kids went straight to biologics and the combo with MTX. I know it is irrational and I'm not even sure wherebit comes from but there it is. Odd how each mind works to paint its own fears. Goodnight all hope everyone is well.
 
Tesscorm

Tesscorm

Moderator
Staff member
How's C doing, other than physically? Is he okay being in the hospital again? Must be so frustrating for him!!! Really sending lots of wishes that the EN helps him while you all decide the best move forward.

(And, yeah, I understand how 'irrationality' can come!!! :ymad: Unlike a lot of other illnesses where you are told about a med, you deal with the issues of THAT med, come to terms with it and move on... with crohns, this happens over and over!! Not easy to come to terms with a new treatment! :ghug:)
 
Clash

Clash

The attending GI asked C how long he wanted to stay, C said as long as it takes for me to feel 100% better. He is okay with it. We have a room for tonight and C said for me to stay with the hubby because they gave him some med that is knocking him out. Probably best for me with this pain, I can't have my next dose til morning and the pain is coming back.

Yeah, I don't even know how to analyze this 6mp suggestion.
 
Tesscorm

Tesscorm

Moderator
Staff member
I'm sure you will be in more comfort in a real bed!! Glad you can go and get some rest! And that C is okay being in the hospital - can't blame him for just wanting to get on with whatever will make him feel better!

Go get some rest!!
 
kimmidwife

kimmidwife

Clash,
I am so so sorry I totally missed this thread update. I have been so crazed with Caitlyn. How are you both doing?
Caitlyn had her terminal ileum resected. It was not a bad surgery. She healed pretty quickly and together with methotrexate had a good 18 months of minimal flares. Unfortunatly for us the MTX stopped working but six months later we found LDN which has been our real miracle.
One thing that really helped Caitlyn through the surgery and I reccomend you request this if he needs to have it is getting an epidural placed during the surgery. She woke up with the epidural and they kept it in for four days after. It was fantastic. She needed minimal pain medication and by the time the epidural was removed she was already recovering nicely.
Please keep me posted and PM me if you have any other surgery questions.
Again I apologize I missed this. Between my health and Caitlyn's as I am sure you well know it is sometimes hard to keep up.
 
DustyKat

DustyKat

Super Moderator
Good grief Clash! :ghug::ghug::ghug:

Fair dinkum, C is a champion! How are things going?

And you too hun, how is the pain?

Dusty. xxx
 
Clash

Clash

Anaprox(sp?) Has really worked on the pain. I think(hope) I'm coming to the end of the chest wall inflammation.

C has done great with the EN, they started him off on peptemen and a slow rate and kept moving the rate up. Now they have switched him to peptide 1.5 and will move the rate up one more time. He has handled it all really well. He hadn't had a bm since Monday, I think. But went a couple hours ago(collected for FC test). It was very solid which is not his usual.

His GI starts in-service this morning so waiting on him. I really want to push him about C's sleeping habits and patterns. It is something I want to get to the bottom of. We have tried and tried to straighten out his sleep schedule to no avail. He is restless and unable to sleep til the wee hours sometimes then over compensates way into the day. I just think the healing can't be at its optimal if his body is not in the natural pattern.

Oh the difference in his coloring since admission is phenomenal, his skin was so pale it was pasty leaning toward translucent but has rebounded to a healthy pink and olive. The difference is really unbelievable!

I may have already said this(everything runs together in hospital time) but the doc has said that he thinks the area on the ct scan is a stricture and there is proximal dilitation. Also, they can feel the inflammation when pressing on the stomach.

My POTs is really behaving right now and I am so thankful. I just had this worry that it was going to be all over the place and I was going to be skyping the doc from the adult hospital down the street! Ha

I'm still not certain I want to wait out a 3 month trial of 6mp, if the present in service GI is right in that the inflammation seen on the ct scan last week is a progression of what was seen last year this time on MRE then in effect C may have not reached remission since dx. In which case, I wonder if surgery might jump start every thing and get us to a place where remission is possible with the meda he is currently taking.

Sorry this is so long, just easier to type/think all this out loud. Thanks for listening.
 
DustyKat

DustyKat

Super Moderator
So good to hear that C is looking better! Bless him. :ghug:

Okay, so progression on what was there last year, how long ago was the MRE?

Certainly proximal dilation of the stricture and the fact that they are able to palpate the area means there is thickening present. Given the ?length of time this has been present are they talking scar tissue? I fear they must be particularly since you feel he may not have gained remission since diagnosis. :( If that is the case then I think surgery is the only option Clash. :ghug:

Fab to hear that you are feeling well hun. :heart:

Dusty. xxx
 
Mehita

Mehita

C's journey is starting to resemble DS's more and more. Proximal dilatation, anyone? During his ER visit this was what most concerned the ER dr. He was worried that section was going to rupture at any minute. He had pulled me aside and said whatever route we chose (surgery or 6MP) that I needed to keep an eye on the swollen part, not so much the stricture itself.

I don't want to encourage you one way or the other, but another thing the ER doctor had said was, in his opinion from what he'd seen so far, that DS was going to likely need surgery (because MRE's a year apart showed worsening) if not that week then sometime soon, so why not do it on our terms with our preferred surgeon... as opposed to last minute emergency surgery with someone who may not have the expertise of our surgeon. Just something to consider.

DS also pinked up with fluids and hospital care... but as soon as we returned home, he slowly slipped back into the poor state he was in before the ER visit. We just couldn't maintain the quality of care/fluids/nutrition he needed.

I hope things turn around for you guys soon (both of you!). :ghug:
 
Clash

Clash

Ahhh....C's GI came by this morning and we are on the same page with the 6mp, he said that the in service GI had taken levels and antibodies test but it was for nil because if there were antibodies no Remicade if there werent antibodies then he is flaring on Remicade and has reached the limit of tweaks.

Dusty, the MRE was a year ago when he was hospitalized and the ct scan was last week. The MRE a year ago showed at the IC valve and I think it has progressed a bit more up the small bowel in the TI. He does think C is a good candidate for surgery and of course if this is scar tissue then surgery is a definite but still a consideration if it is inflammatory. He said he doesnt see surgery as a last resort for some types of patients(location/severity) and C falls into that category. So the EN will be used to see if there is improvement as an indicator of it being inflammation and buy time for the FC test to get back. Also, he needs a round of EN in order to gain the weight that would be necessary for good recovery if there is surgery.

More to come, the GI just stopped by otw to a colonoscopy and said he'd be back later to talk.

Oh and he mentioned vedolzumab again.
 
my little penguin

my little penguin

Moderator
Staff member
I am curious why the vedolzumab and not humira .
Since vedolzumab is still not approved in kids and has good or bad results depending on which study you read.

Hope the Gi has more answers and things improve for him
 
Maya142

Maya142

Moderator
Staff member
Isn't vedolizumab not even approved yet? I thought it would be approved in the summer? Fwiw, my daughter is 17 and her pediatric rheumatologist said even though Stelara was not approved for kids yet, she would let her use since she's 18 so soon.
 
G

Gmama

Location
Pennsylvania
Clash I'm so sorry that C is going through all of this, but it sounds like you are well on your way to having definitive answers & a good medical team to get C into remission...I will be praying for a quick recovery, whatever the decision may be so that he is back to feeling good.
And on to you!!! I can't believe you have costochondritis on top of the POTS...this is the pits. I too was diagnosed in October with costochondritis. My dr was convinced it was my gallbladder. Lots of good advice already, but just wanted to add that I do get some relief from going to the chiropractor. Not that you have time for that right now, but maybe when things settle down with C. My experience is that going to the Chiro gives me some good relief, but it just doesn't last. My rheumatologist prescribed Lidocaine which just numbs the area, again not 100%, but has taken the edge off to fall asleep.
I feel like all the stress with LJ brought this on & when he is finally on the mend, it will go away.
Hang in there, you are a great Mom!
 
Clash

Clash

my little penguin, he hasn't explained it this time but I think an explanation he gave when we began Remi might be his reasoning. I'm not sure if I can effectively explain but I'll try. He drew what looked like say a heart rate on a monitor or seizmagraph(sp?) for earthquakes, so a line with high peaks and low peaks. He said for most people with CD the tnf alpha is creating the bulk of the inflammation and represent the high peaks, the low peaks are other players that vreate inflammation as well but tnf alpha is the big player and in these people an tnf blocker works really well. But in some people the high peaks(big players) aren't tnf alpha and so no reason to run through all the tnf blockers if that is the case. He also mentioned previously this is the same reason vedolzumab works so well in some patents and hardly at all in others.

Of course, this was dumbed down for me I assume. This may not be the reason and I will know more this afternoon, I guess.

They are bringing C a tens unit for his joints in case it helps but the nubain(sp?) Isn't working all that well takes the pain from a 7 to a 5.
 
Maya142

Maya142

Moderator
Staff member
When my daughter inpatient they gave her morphine for her joints - it was the only thing that helped (well, and steroids).
I've also been told that different people responds to different classes of meds, which is why if Humira does not work for M, we will be done with anti-tnfs. I would ask about Stelara. It's an IL12/23 inhibitor (I think!) and will be approved later this year. I've heard very good things about it!
 
Clash

Clash

Maya142, same here I think since C is so close to 18 is why it may be an option.

Gamma, so sorry to hear you have costochondritis too! The anaprox has done a great job yesterday and today for me and I hope it continues but I'll keep chiro and lidocaine inind for later.
 
DustyKat

DustyKat

Super Moderator
I hate to say it Clash but, I would be pushed to think that there hasn’t been fibrosis take place when inflammation has been present for so long.

It is likely that this latest setback is acute inflammation and the current treatment will hopefully pull it back to its previous chronic state but unfortunately there it will remain. :(

Of course hoping I am wrong, wrong, wrong!

Dusty. xxx
 
Clash

Clash

I feel like we are dealing with some fibrotic tissue as well as an acute flare.

My husband has been anti surgery after what his niece has been through but he has said everything seems to be adding up to surgery being the most viable option...huge step for him. I want whatever is going to give C a chance at deep stable remission, if that is surgery so be it.

Still tripping out on the difference in color from fluids and formula, it is mind boggling!
 
DustyKat

DustyKat

Super Moderator
Oh and wholeheartedly agree with the surgeon, when it comes to Crohn’s isolated to the ileum, surgery can have very positive and long lasting outcomes.

Dusty. xxx

ETA - Sorry slow to post. :eek2: I can well imagine your husband’s hesitation Clash and it must play terribly on both your minds. :ghug:
 
Clash

Clash

Yay we busted out! We are headed home now. C will be doing EN. He will have an appt in 3 weeks. No more Remicade and MTX is bumped up to 15mg for now. The appt will be a decision on plan going forward. Thanks everyone for all the support!
 
Clash

Clash

So we have arrived home. C connected himself to the feed. We have 4 days of formula, 5 days of supplies and the shipment should be here Tuesday. C did great with setting everything up and getting it going.

So the total weight gain for the 4bdays was 2.2 lbs. That's a start!
 
Clash

Clash

I'm doing good, so worn out. It is so weird to me how different hospital time is from real world time. I was all go and energy at the hospital but have completely crashed at home.

So C has 14 hour feeds, it is peptemen 1.5 and it is set to 120 we can ease it up to 140 at some point if he so chooses.
 
Maya142

Maya142

Moderator
Staff member
Glad you're home and C gained some weight! How does he feel about having stop Remicade, you said earlier he was a big fan of it?
Hope you both get some rest in the next few days.
 
Clash

Clash

He hasn't said much about stopping the Remicade. I think if the GI part of his crohn's pain started back he would probably be asking for Remi but since it seems to have only took away the tummy pain this time and not affected joint pain and fatigue.
 
kimmidwife

kimmidwife

Clash,
So glad you guys are home. I want you to know that before Caitlyn's surgery we were also terrified and kept putting trying to avoid it. In the end the surgeon said we had to do it and had no choice. Thankfully it went smoothly and she recovered quickly. I hope you still manage to avoid it. Sending lots of hugs to both of you. Very glad to hear about the increSe I weight and that he is looking so much better.
 
Clash

Clash

I think since the CHOP protocol is EN for 80-90% then maybe it is not as big of an issue. Not sure yet but he knows he can eat but rarely does because he says he feels full, at least since the second morning.

Quick question though, his bag holds four cans when it starts getting low he unhooks and caps his Ng tube then puts the pump on hold caps it then adds the last three cans. Should he be doing this or wait til bag is empty and do the whole reprime bit and all?
 
Tesscorm

Tesscorm

Moderator
Staff member
We did it as you are doing Clash. When the bag was getting low, we refilled it (without even stopping the pump). This is also how it was done while S was inpatient at the hospital. Our formula was supposed to be room temperature, so I would take it out of the fridge a bit earlier or, when rushed, let it sit in some warm water for a few minutes. (But, there were times, S just took it out of the fridge and hooked it up immediately :eek: - for the most part, he was okay but I do think it caused him stomach aches a couple of times.)
 
DustyKat

DustyKat

Super Moderator
Good to hear you are home Clash. :)

Sending loads of well wishes that all goes well and stays settled until the follow up appointment. Good luck to you and your boy. :heart:

Dusty. xxx
 
G

Gmama

Location
Pennsylvania
So glad you are home & things are coming along. Hope you get some much needed R&R. Nothing feels as good as sleeping in your own bed! Sending big hugs your way:ghug::ghug::ghug:
 
crohniekid

crohniekid

Poor guy! Glad that he is feeling well enough to be at home and have my fingers crossed that he continues to gain weight and improve!!
 
Clash

Clash

Thatnks so much guys!

Tesscorm, my little penguin. The hospital didn't say anything about the cases needing to be refridgerated. I remembered to ask the home nurse who brought us the supplies and showed us how to work the pump and he said not to refrigerate just to remember to flush tube between feedings so formula wouldn't clog. The formula is peptemen 1.5. Should I refrigerate?
 
Jmrogers4

Jmrogers4

They don't need to be refrigerated unless he's drinking it because it tastes better or it has been opened.
Glad he is home.
 
Clash

Clash

Oh ok Jmrogers4, I was just doing a little mini freak out scouring the boxes for a keep refrigerated sticker, whew.

Did any if you get the backpacks? Im torn since it will be at this level for 8 weeks then down to maintenance but C wanted to go see his grandparents and it was a bit of a hassle. Plus, he essentially carries the pole everywhere because he says it rolls to slow.ha!
 
Tesscorm

Tesscorm

Moderator
Staff member
We had to make our formula... came as a powder so, perhaps, once mixed, it's not in a sealed container like the peptamin??

S did find the pole cumbersome and annoying. We didn't get the backpack because, in S's case, the annoyance from the pole was only for a 2-3 hours in the evening and the rest was overnight (this is when he was on exclusive EN for 8-10 hours daily x 6 weeks). Once he was on supplemental only, the amount was small enough that it could be done completely while he was sleeping.

If C just needs to run into another room for 10-15 minutes, I guessing it wouldn't be a problem to just disconnect for that time period. It will extend the length of time but... 10 or 15 minutes wouldn't be a big deal.
 
Farmwife

Farmwife

I'm a bit late but I'm glad you guys made it home.

My Grace has a back pack that's made for formula feeds. Our insurance covered the cost. But you can buy regular backpacks and just make shift one.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Clash said:
Thatnks so much guys!

Tesscorm, my little penguin. The hospital didn't say anything about the cases needing to be refridgerated. I remembered to ask the home nurse who brought us the supplies and showed us how to work the pump and he said not to refrigerate just to remember to flush tube between feedings so formula wouldn't clog. The formula is peptemen 1.5. Should I refrigerate?
Click to expand...
No. We've never refrigerated.

The backpack definitely comes in handy if he is awake for any significant amount of time while getting feeds.
 
Clash

Clash

I was really expecting more reticence and push back from C but he is really on top of this. He got everything ready for today. He had a friend want to come visit and I said it was fine but feeds were starting at 5. He said no worries he won't mind having to see me do all that. So they are watching a movie and playing Xbox.

His report card was here and besides a 90 in current events everything else was 95 or above. Also he just got invited to a neighboring school prom so all is going well
 
Tesscorm

Tesscorm

Moderator
Staff member
So glad he's doing well with it! S also had friends over often, they'd even all crowd in the bathroom to watch S insert the tube :lol: All were really supportive and, other than their interest in seeing the insertion, didn't think much more abt it and just moved into other things like Xbox! :D

And WOW with those marks!!! Amazing! You must be really proud of him! :) great job mom!!
 
imaboveitall

imaboveitall

V was on 24h feeds and used a backpack that came with the Infinity pump (very light and small pump), IV pole at home.
Now she just puts the bag in her bedside table drawer and leaves the drawer open.

He should eventually start taking the tube out and placing it like V does, if you choose to continue it longer term. She had it indwelling 3 mos before starting to remove/place herself.
 
Clash

Clash

The plan was fir him to take it out and put it in. I think since he isn't out and about right now he figures, "what's the point" because it comes out at 8am and goes back around 4 or 5pm. His sleep schedule is still all messed up. The docs think it is a serotonin problem. So right now he doesn't get up til after lunch or later. The docs said there was no reason to force him back into a natural sleep schedule until we got the serotonin issue straightened out.

I was really glad the docs got to see his schedule and how much he sleeps, I think it was an eye opener.
 
Tesscorm

Tesscorm

Moderator
Staff member
Actually, we did the same as imaboveitall re the nighttable... For S, at the beginning, he found the sound of the pump annoying when trying to fall asleep so I also put the pump in the drawer and draped a towel over it....
 
Clash

Clash

I'll mention it to C. He sleeps with a fan on so I don't think he hears the pump, at least he hasn't mentioned it.

I'm wondering now if I should speak with the doc about it being indwelling until we back down to maintenance or if he will soon want to start changing it. I really thought he'd be quick to want to change it but he seems comfortable with. Maybe a convo I need to have with C.

So today he ate half of a scrambled egg sandwich, and a two grilled chicken tenders and that was all in his 10%.
 
Jmrogers4

Jmrogers4

Nice job on the straight A's and a prom invitation as well. Glad things are going well with the EN.
Yes I was a little surprised when Jack was on board with it in the fall but I think he was at a point, he just wanted to feel better and if that was what he needed to do then that's what he would do.
 
Clash

Clash

So we got our shipment of supplies today. C took his tube out and when we went to put a new one in that the company sent they were 8FR...ughh so pissed. C tried for over an hour to get it in. It was horrible! He was so stoic and didn't get upset but it was killing me. He finally let me try and I got it in first try but I am so unsure about this placement thing. They gave us ph strips and said make sure it is below 5, his have ranged from 1 to 3. Also, I think because he kept trying for an hour there was blood and his sinus were draining. I really don't like this ph thing, how do I know it is not in his lungs??? How does the stethoscope thing work, what did the rest of y'all do to check? I'm not liking it at all.
 
Tesscorm

Tesscorm

Moderator
Staff member
I know Dusty has agreed with me before (I wasn't sure until she said so! :lol:) but, you will KNOW it's not in his lungs! If it was, he would be gagging, coughing, etc. I think the question about the lungs is more crucial when you're dealing with infants or those unable to respond as well as C would.

We maybe became very complacent :eek: but S stopped checking the PH level after a little while, although he did continue to check for stomach fluid (but, even this, sometimes came up empty??). Side note - do not let C drink red gatorade before checking stomach fluid!!! Gave S and I quite a scare once until he remembered about the gatorade! The stethoscope was hard to 'hear' and, I'm assuming you're listening for the 'pop'??? If yes, when you push the air in, make sure you push the air in quickly... slowly won't give you the pop sound. Easier when two people do it - one pushing the plunger, the other listening...

Did you guys measure the tube? If I remember correctly, to find the right measurement you do:

(Measure this outside his body) Put the end of the tube (the part the will end up in his stomach) about 3 finger widths below his sternum (might be a bit more if he's tall??:confused2:), from there the tube should run up his chest, up behind his ear, across his cheek and to his nostril. The point where it reaches his nostril will be how far it needs to be inserted. I don't know if this is helpful S's tubes had numbers on it and his measurement on S's was approx. 60 (but, I don't know if the numbers represented inches or if they vary by manufacturer). Once you have this measurement, mark it with a marker because this will always be how far he needs to insert it. To make it even easier for him, at that mark, cut some tape about 1-2 mm thick and wrap at that point - when he's inserting the tube, he doesn't need to worry about 'watching' for the right spot, he'll feel the tape.

Did they give C some lubricating and/or numbing gel? S used it at the beginning and it helps the tube slide down easier. Also, is he drinking water as he's inserting the tube?

I hope all that made sense!!

(Dusty - confirmation I'm give 'safe' advice is always helpful! :lol2:)
 
Clash

Clash

Thanks Tesscorn you truly eased my fears!

We are doing all you mentioned with measurement, marking, water and lubricant. C just woke up and came in and asked if I would please find some 6FR tomorrow to get by until we can get it ordered. He says the inside of his nose and throat hurts. I think the blood pulled when we checked stomach fluid was what the opening in the weighted tubes caught from so many tries. Twice when he pulled out it was coiled and painful.

I just felt so bad because I know it was painful and he was refusing to give up and I felt helpless. I know he was afraid for me to try after he had been at it so ling because his nose and throat were sore. So glad I got it in on first try but truly the damage had been done.

Also, how fast would you say the weight gain accrued? He saw some weight gain while in the hospital but not so much since coming home. I hope he doesn't get discouraged.
 
Tesscorm

Tesscorm

Moderator
Staff member
S gained 6 lbs right away, in 2-3 weeks, then only another 4 lbs until the end of the 6 week exclusive period. However, he was very active at that time (2+ hours of phys.ed. every day plus playing on a ball hockey and an ice hockey team) - dietitien said the formula dosage was calculated on 'average' activity so anything above or below average would influence weight gain. Once S ended the exclusive period and began eating a regular diet plus his supplement EN (supplement was 1500 cal/day, 5 nights per week), he gained another 20 lbs in six weeks. I imagine, being able to eat, he instinctively ate what he needed for his activities.

(His EEN was 3000 cal/day, every day)
 
Tesscorm

Tesscorm

Moderator
Staff member
And, I agree with you re the blood... it sounds like it was really tough inserting the tube... makes complete sense there might have been some irritation/bleeding. :ghug:

Poor guy! I hope you can get a 6fr tube for him tomorrow!!
 
DustyKat

DustyKat

Super Moderator
Spot on Tess. :)

You have the measuring right Clash…



As Tess has said, in a person that is conscious, an adult, cooperative and with no gag issues, the chances of an NG tube being inadvertently inserted into the lungs and not knowing it, from the patients point of view, would be very slim indeed.

Just a couple of tips, you may already be aware of them:

1. Blue litmus paper is no longer the desired method of testing tube placement but used in conjunction with ph strips it may give you that extra level of reassurance to use them as well. They are cheap and you should have no trouble getting them from a pharmacy or online. When blue litmus comes into contact with acid it turns red/pink.



I see that C isn’t on any PPI’s but for those that are or are on H2 receptor antagonists like Ranitidine, Cimetidine, be aware that they can change the acidity of the stomach and so may make accurate ph readings difficult.

2. Place the tube in its packaging in the fridge. A cold tube can be easier to insert due to its rigidity. Also the rolled up position it is stored in, when unrolled tends to mimic the shape needed when inserting through nasopharynx and into the oropharynx. Be aware though that a cold tube can cause more nasal trauma if there is trouble inserting it and repeated attempts are made.

3. When inserting ensure the chin is on the chest. Has the opposite effect to CPR. Head back opens the trachea, chin on chest closes it. So again the NG tube has an easier route into the oesophagus.

Dusty. xxx
 
imaboveitall

imaboveitall

Is he drinking through a straw while attempting to place?
Is the guide wire in the tube?
Have you tried both nostrils?

Drinking while placing ensures the epiglottis is closed and chance of inserting in trachea virtually nil (you WILL know if it goes there, believe me. NO WAY with a conscious patient who isn't an infant that the pt won't start gagging violently).
Also drinking helps it slide down. V cannot insert without drinking.

Tubes minus guide wire are so soft they frequently kink. Use the guide wire, them pull it out.

V cannot insert in her L nostril, it always kinks.

I know V would Skype with him if he wanted, to demonstrate. Holla if he wants to. After doing it EVERY NIGHT for 5.5 years, we're sort of ninja at it.
 
Clash

Clash

Thank you Dusty and imabovebitall! He does drink water through a straw when inserting. I'll have to try the "refrigerating the tube".

I changed the order to 6FR we will have those coming in but I've spent all morning on the phone trying to find one to use til then to no avail. So frustrating.

He hasn't woke up yet, rough night with the irritation of trying so ling to get the 8FR down but I'm hoping that is better today.

ETA: Dusty I am going to get some of those litmus strips today, thanks for the tip!
 
Clash

Clash

Haha just reread the "ninjas at it" comment! C was so thankful that I got it on the first try he kept calling me in his room to say thank you mom. I think he knew how terrified I was to try it after he had been at it for over an hour! I just kept saying we can go to ER and have them place it. He was not having that. I'll mention the offer to him, imaboveitall, thanks!
 
Tesscorm

Tesscorm

Moderator
Staff member
Do you think your GI's office would have any 6Fr tubes available if you explained why? If it's not far, you could drop by and pick up one or two.

And, yes to what imaboveitall said re the nostril side... S could only use the left side, never worked on the right.
 
Clash

Clash

C tried both side and he can only use the right side. The hospital and GI he uses is over 2 hours away so that isn't an option. I called local GIs but they don't have them, also all dme companies in our area and surrounding area they don't have them in stock. The local hospital said they don't have the size I need although I find that hard to believe. I mean the say they have 6FR but not the right length. I also tried the home health care places where I have friends working but no such luck.
 
kimmidwife

kimmidwife

Did you try local medical supply places? They are basically like pharmacies but carry more advanced medical supplies. Just google medical supply store with your city name and it should come up. I forget the name of the one by us but I am pretty sure they are all over the country.
 
Clash

Clash

Thanks kimmidwife, yes I was including those with dme. There aren't very many in our area and the one I'm most familiar with said the only had two patients on ng tubes so they didn't stock the ng tubes. C says his nose and throat are hurting, I assume this is due to all the hassle of getting that tube in. He is still sleeping I just woke him to check for pain, fever etc.
 
my little penguin

my little penguin

Moderator
Staff member
Can you call Aspria even though it's not local and see it they can overnight on?
Same with GI can they overnight it to your place ?
Can he leave that one in for a few days to let his throat heal ?
 
Clash

Clash

my little penguin , I contacted the dme and they corrected the order and had some in office they were going to overnight. I was just hoping to locate one for today. As sore as his nose and throat are though he probably won't feel inclined to change the tube today any way. I'm just worried when he wakes he is going to think the pain is due to the size of the tube and not the fact that he spent over an hour trying to cram it down his throat. But , I guess I will just try to keep him comfortable till the new size gets here tomorrow.
 
Clash

Clash

Oh and C had an appt with the GP yesterday to go over hospital discharge summary and some new meds they wanted to try to straighten out his sleep schedule. The docs feel that C has low serotonin levels and that is why his sleep schedule is so wonky. They had him see psych. and he didn't feel C was depressed or anxious but agreed with the serotonin affecting sleep. He felt Celexa at 10mg would help we started that in hospital and they said it would take time to work and see effects so he also offered seroquel 50mg as needed we decided not to try that one. I spoke to the GP and he said the dose was really low and it would probably help him to fall off to sleep but still scares me.

He also went over the discharge summary and stated it read " the affected area of the small bowel was quite long." This is also driving me nuts, summary didn't have length, GI nurse said report didn't state length, in service GI said the same, Chase's GI said it was a long area but didn't have report on hand to elaborate. I should be receiving report soon but it just keeps playing on my mind!
 
Tesscorm

Tesscorm

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Staff member
It just dawned on me that I still have some extra 6Fr tubes at home... if you have any delays getting them from the supplier, let me know. If you'd like, PM your address to me and I'll throw a couple into the mail tomorrow anyway.

Re the length - my impression from S's GI/nurse is that's it's tough to pinpoint an exact measurement... all of S's MREs are vague re length, the most exact report said there was 20-30cm of inflammation. I asked the nurse or GI how could they not know if it's 20 or 30cm - 10cm seemed like quite a big difference to me, I was told the 20-30 was probably only an approximation, that with all the curves/loops, it's difficult to give an exact measurement.
 
Clash

Clash

We should be in 6FR business with the next partial order and the ones he is over nighting to us but thank you so much for the offer.

That makes me feel a bit better about the length. I never thought of that. I guess I'm just anxious about this next appt. and where Chase will stand. I mean he had remicade and the ct on the same day and although the remi did stop the crohns tummy symptoms it is apparent from lack of weight gain and the progression of that affected area that remi isn't doing the job. So just worrying about the next step, I guess.
 
Tesscorm

Tesscorm

Moderator
Staff member
These are all tough steps... surgery, different meds, etc. As difficult as the decisions are, I think it's even tougher to be without a decided gameplan. :( But, from all you've said, it really does seem that C has a great team/GI behind him... I would definitely take reassurance that the GI has been on top of all his symptoms and seems proactive in trying to stop the inflammation. I think, C being on EEN, will give you a bit of time to see what the GI says and then think about it a bit. :ghug: :ghug:
 
DustyKat

DustyKat

Super Moderator
Antidepressant type medication takes about 3 weeks to take full effect.

Re the Seroquel, if you did go down that path there is a 25mg dose available, well there is here so I imagine it would be available in the US too??

It certainly isn’t an exact science when interpreting images but in our case Matt’s CTE at diagnosis was exceptionally accurate. It stated he had 100mm of inflammation with a further 50mm of stranding proximal to this area. He did develop complications/flare within 3 weeks of his diagnosis that involved the 100mm area plus the stranded area. His post op report also gave the same figures of 100mm of chronic inflammation, as stated in the CTE, plus a couple of troublesome skip areas in the proximal 50mm.

I know I have likely asked this before Clash so bear with me…:lol: What are C’s B12, Vit D and magnesium levels?

Dusty. xxx
 
Clash

Clash

Dusty, vitamin D is low again so we are supplementing with D3, the one David posted on here. B12 was ehh...GI nurse said normal range but a supplement would hurt so we have that. Magnesium was normal but not sure that test tells the tale. Oddly enough, the hospital nutritionist told us to not give multivitamin(he doesn't take multi we supplement individually) while on EN because the formula will provide everything. But we are still supplementing.
 
DustyKat

DustyKat

Super Moderator
Do you have the numbers Clash?

All of those have the ability to impact sleep and after much reading I have to agree with David that the levels required for those with Crohn’s, especially ileal Crohn’s, can be significantly higher than those of the general public. Still within normal limits mind but at the higher end, I just find that the majority of health professional see a reading is within normal limits and leave it at that. Problem is they are often at the lower end of the normal range or lower end of mid range and it just isn’t enough. :(

My aim for Matt is:

B12 - over 500

Vit D - 120 (US 70)

Magnesium - at least .90

Dusty. xxx
 
Clash

Clash

His but d was at 24, we had it above 70 but it started falling again. I'm not sure about the magnesium and the b12, she gave me the numbers but I was in the grocery store at the time and didn't write them down. This was a week before hospitalization.
 
Clash

Clash

Ok so frustrated. We went to start the feed and could not pull any fluid to check placement. So C pulled the tube out we flushed it then after several tries got it back in and still can't pull any fluid. Not sure what to do.
 
Farmwife

Farmwife

Did you check with a stethoscope placement?
Grace had this happen and I think I had to put a bit of water through and then tried to pull it out. That seem to work but I made sure it was in the stomach.
 
Clash

Clash

Thanks. They didn't do stethoscope with us just ph strips. I had him lay on his left side fir a few minutes then checked again and pulled fluid. The tube directions mentioned doing this.
 
Tesscorm

Tesscorm

Moderator
Staff member
Clash, I really don't want to discourage you from doing anything you've been told to do but, once Stephen had his tube marked at the right measurement and used this measurement to insert, there was never a problem with placement. We did check at the beginning but stopped after a little while as all was always good. And, I'm sure that we also had times that there was no fluid when we tried to pull for stomach fluid.

Do you have the measurement of the tube from when it was placed at the hospital? You can be assured they had the right placement and you could just use the same measurement.
 
Clash

Clash

Tesscorm, the original tube was marked at hospital but apparently not with a sharpie because by the time we changed it was wiped off. I tried to tell C since it was placed he didn't need to recheck but he is fairly apprehensive about all this and is following each and every step. I'm hoping that this will pass and be more lax over time?
 
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