# C's surgery thread



## Clash (Aug 25, 2014)

I thought I'd start a new thread and try to chronicle his surgery and recovery. Hopefully, it will give other parents facing this some insight.

Today, we head to the hotel by the hospital. So, first packing, here are some items outside of regular clothes that have served our hospital visits well:
Jacket(for cold exam/waiting rooms)
Pillow
IPad
Xbox
Laptop
Extra chargers
Card games
Homework and any books he should be reading(also if it is a novel like say Oliver Twist, I try to get the audio book as well. Since he's 17 I know he can read and the audio can help when he's tired)
Snacks and drinks(this time more for me than C)
Extra socks
Microwaveable heating pads for his joints

Also we downloaded a journal app so he can put his experience and feelings down there when/if he chooses. I thought that might help the process for a teen whose usual answer to everything is fine, yep or whatever.

He will do a bowel prep today. Just like a prep for colonoscopy he will be doing clear liquids and miralax/gatarade.

Ughh just got phone call from hubby, while typing this up, that ins needs some letter from surgeon. I'll check in later.


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## Clash (Aug 25, 2014)

The insurance part has been straightened out. The certification process was completed. Just a side note, always a good idea to call your insurance and make sure everything is set up properly. Get a ref. # if applicable so if any problems arise, such a more days than expected in hospital, you can check on recertification status etc.


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## Farmwife (Aug 25, 2014)

Ill be praying everything goes well.


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## Clash (Aug 25, 2014)

We are going to head out in just a few minutes. I dread the ride. C starts his bowel prep at 3pm so we will be there in time. 

C has had some bms that were basically D over the last two days. He thinks it may just be stress since there aren't any other issues going on, like pain, joints or episcleritis. 

He seems really calm on the outside but I know he has to be anxious. I know I am and it has affected my tummy as well. I wish I could do this for him and spare him all this pain. Hell, I wish I could carry the burden of this whole disease for him!


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## DJW (Aug 25, 2014)

Hope all goes well. Is this the first surgery.


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## Clash (Aug 25, 2014)

Thanks, DJW. Yes, it is his first surgery. They will be removing about 10 inches which will include his ileocecal valve and cecum as well as a bit of small bowel above the IC valve. His issues are at his IC valve.


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## DJW (Aug 25, 2014)

I hope he gets years of remission.


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## Sascot (Aug 25, 2014)

Good luck! Really hope things go smoothly.


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## Maya142 (Aug 25, 2014)

Will be thinking of you and C, Clash! That's a great list - we'll use it when we go in tomorrow (except no xbox for M lol).

Sending SO much luck, hope this will get things under control for C:ghug:.


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## Clash (Aug 25, 2014)

Maya142, good luck with the ng tube for M! Keep me updated on how it is going! I hope helps her to gain weight!


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## Mehita (Aug 25, 2014)

Good luck! Be sure to take care of YOU as well. Food, water, naps. Nap when he naps. The first day will be rough, but each day will get a little better, a little easier. Hugs!


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## Brian'sMom (Aug 25, 2014)

I'll be thinking of you. I'd have given anything for my son to have a section that was one of the easier spots to remove. My son's problem is in his rectum.. therefore here we are... still hanging on and not doing so good. I only say this to help ease your worries.  The rectum is a TOTAL GAME CHANGER!!


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## xmdmom (Aug 25, 2014)

Hope all goes really well!


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## Clash (Aug 25, 2014)

C has never had issues with bowel prep before but he did today. He complained of a lot of pain and vomited. I called the surgeon and he said not to worry about finishing it. He was 8oz shy of drinking it all. The surgeon also said to make sure he stayed hydrated and to call if things got unmanageable.


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## my little penguin (Aug 25, 2014)

Thinking of you and C 
Hope things go as planned


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## awmom (Aug 25, 2014)

Will be thinking of you tomorrow Clash.  Hoping everything goes smoothly and the recovery is quick, and most important, LASTING!!!!!


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## Brian'sMom (Aug 26, 2014)

I'm hoping things go well tomorrow too. I feel good that it will go well and your boy will have some relief and long remission!! Surgery can be a very right thing to do many times. I'll be thinking of you both tomorrow. Hugs and Hugs!!


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## Willowcat05 (Aug 26, 2014)

Hope everything goes smoothly with surgery and that he gains remission afterwards is he having keyhole surgery? My son had this done last october and went straight into remission and stayed well it was the best decision we made x



Right hemicolectomy oct 13
Meds methotrexate injections
Folic acid


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## Clash (Aug 26, 2014)

So we are up and getting ready. C felt sick to his stomach most of the night.

Willowcat05, the surgery is laparoscopic. The Doc said there would be 3 incisions. C and I were talking last night and it occurred to us that neither one of us posed the question of how long would surgery take. We both got a laugh at that.


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## Maya142 (Aug 26, 2014)

Sorry to hear C had a bad night. Hopefully, the surgery will take of everything!
Hope it all goes well. Thinking of you and C:hug:!


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## kimmidwife (Aug 26, 2014)

I didn't realize it was today!!! Sending prayers for everything to go smoothly!!!! And prayers for a fast recovery!!!


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## araceli (Aug 26, 2014)

Thinking of you. I hope the surgery goes well and C has a speedy recovery.


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## Clash (Aug 26, 2014)

Ok so we got here at 10am, they registered him. We spoke with the anesthesiologist. C had turned down something to help him relax because he says he isn't nervous. The anesthesiologist said with his age the nerves generally don't set in until right before so since there wasn't a downside to the med being on board why not reconsider.

So now I'm sitting here with an extremely goofy C who is trying to make all the faces the pain chart shows and is singing a bit!

His bp was low on the low side when we got here, 104/48.

Doc said total time after leaving this room should be about 2 hours.


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## my little penguin (Aug 26, 2014)

Typically at our hospital it's versed .( aka silly juice)
They won't remember the procedure either 
Win win .


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## Willowcat05 (Aug 26, 2014)

My son was in surgery for 5 hours . 2 hours seems really quick, hope it goes well .the best way to recovery is to get him up and walking asap this helps the bowel to wakin up again he will not get out until he has a bowel movement .


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## valleysangel92 (Aug 26, 2014)

Good luck!  None of us thought to ask how long I'd be in my surgery, which might of been a good thing since I ended up being in recovery for much longer than anyone thought I would be ( they were waiting for a bed on a specific ward) and my parents didn't know I was out of surgery until my dad almost burst into recovery looking for me. I didn't get a premed,  but then I was 20. 

I hope everything goes smoothly and your son has a speedy recovery. You are very welcome to put him in touch with me if he ever feels he would like to talk to someone whos around his age ( I'm 21 but got symptoms from age 15)  .


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## Clash (Aug 26, 2014)

MLP, yep it was versed and liquid. The also gave him an oral pain med, loratab.

He is in surgery now. They took him back at 12 and called shortly after to say anesthesia and intubation went well and surgery had begun.

Thanks for all the support guys!

Valleysangel92, I will pass that along to him, thank you.


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## Clash (Aug 26, 2014)

Ok doc came out(it was quick!), he said surgery went smooth. There was not a lot of bleeding, 3 small incisions, rest of small bowel looked good, and reconnection was good. He said it was a clean connection. Today's concern would be bleeding but the connection area went so well he wasn't expecting it.

I'm waiting in the room now with all our stuff and C should be up shortly.

Doc said he's really hopeful for a good outcome based on what he saw and how smooth it all went.


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## kimmidwife (Aug 26, 2014)

Glad to hear all went smoothly! Hopefully since it was laparoscipally done he will have less pain. Continued prayers being sent!


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## Sascot (Aug 26, 2014)

Glad things went well, hope it continues smoothly


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## valleysangel92 (Aug 26, 2014)

Glad everything went well!  Hope C isn't in too much pain. If he has a morphine pump make sure he's pressing it every so often and not letting the pain build ( that's what I was doing at first, kept forgetting to press it until the pain was too much) . Hope he has a straight forward recovery.


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## Clash (Aug 26, 2014)

Yes so he has a PCA pump. His med is dilaudid. We have been trying to remind him to use it(it lights up green when he can press for med and it is set on every 10 minutes. Everything has gone well so far. He has been able to chew some ice chips and he has done that breathing apparatus with the ball a couple of times(that is still really painful).

Apparently one of the recovery room nurses told him that his incision was larger than expected which really had him worried when he came to the room but the doc said nothing like that to me so either he heard the nurse wrong or maybe the nurse misunderstood. 

He hasn't so much slept as dozed off every few minutes only to wake up if his heart rate monitor or resp. rate alarm went off. They aren't going off as often now.

They put flagyl on board about an hour ago and it just finished. He has fluids in board as well as a catheter. The nurse said he has just started to catch up in urine output.

I'll update tomorrow, thanks for the support!


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## Maya142 (Aug 26, 2014)

Glad things are going ok Clash. Hope C's pain remains controlled and he recovers quickly!


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## DJW (Aug 26, 2014)

That sounds like a positive report. Happy to hear that.


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## my little penguin (Aug 26, 2014)

Glad its done
Take a few minutes to your self and rest .


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## Farmwife (Aug 27, 2014)

What a blessing it all went well. I hope today he's doing better.


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## Sascot (Aug 27, 2014)

Sounds like things are going as well as these things can. Glad he is okay


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## Clash (Aug 27, 2014)

Ok so we had a bit of a glitch about 8pm. The nurses had been telling him to stay ahead of the pain and not try to hold off on hitting the button. So about 8:30 the machine says it's maxed out and the nurse comes in and says he has hit his max of med for the day!. Wth! C was upset, he was saying had they told me there was a max I wouldn't have hit the button and if there was a max why we're they encouraging me to hit it each time? So he went 2 hours w/o pain med. He was hurting but wouldn't show it because he was scared they would think he was faking. Finally the nurse heard back from the doc and they turned it back on.

I think had I known there was a max I would've told C to more seriously consider his choices involving the epidural. I think he would've made a different choice had he known. So he was on the pump about 5 hours, he now doesn't want to push the button(pain is worse today) so he will still have it on board for the walk. I'm waiting to talk with the nurse to better understand how he should proceed regarding the pump.

Also, weird that dilaudid always just knocks me out yet he just kind of doses a minute then wakes up? Shouldn't it be knocking him out?


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## valleysangel92 (Aug 27, 2014)

Wow, I've not heard of that happening before. I had morphine so was probably different but I was pressing mine regularly on the advice of my nurses and I never maxed it out. Only time I had to wait was when the syringe ran out and they needed the specialist nurse to over see it being changed. 

I get told often that I should be knocked out by some of my meds, especially when in hospital on tramadol and morphine (they gave me both together, alternating through the day) as other patients older and bigger than me were being made into zombies by just one of them. 

I think it's very dependant on the individual, and I have a different reaction each time. First time I had tramadol, it hardly effected me,  at the moment I can only take 2-3 in a day or I can't stay awake for 2-3 days after  

Maybe the dose he's having is a lower one than you've had?


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## Maya142 (Aug 27, 2014)

Oh Clash sorry to hear what happened. I hope they get it sorted out soon. Poor C - he's going through enough already but of course they don't want to give him too much.

M (who is tiny!) does not get knocked out with Tramadol 4 times daily. Morphine (IV) doesn't knock her out either. Dilaudid (we were told) is stronger than Morphie but it's pretty individual.

I hope C feels better SOON:hug:


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## Clash (Aug 27, 2014)

Doc just came in. Everything looks good. They are adding benadryl because the dilaudid is making him itchy(not overly so). The will be removing the catheter and he is starting clear fluids in just a bit and they are coming to remove the catheter. After they remove the catheter he will walk a bit.


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## DJW (Aug 27, 2014)

Excellent. Epidurals and itching go hand in hand for me.


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## Sascot (Aug 27, 2014)

Poor thing. Hope the walking goes okay. Didn't know you could max out on these things, you would think the nurses would warn him.


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## Clash (Aug 27, 2014)

Ok he has walked several times, he is getting a bit of jello and Gatorade down and the catheter is out. But he has not peed yet and he is most anxious about this. There is pain but he says it isn't unbearable and he hasn't used the pain pump in a a while. He says the walking is easier without because he is not as dizzy.


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## Jmrogers4 (Aug 27, 2014)

Haven't really been on the past couple of days and just wanted to say, glad surgery went well and things are moving along and he has many years of remission from the surgery.


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## kimmidwife (Aug 27, 2014)

Clash,
Finally had a chance to get on and see how things are going. Sorry to hear about the pain pump issues. Hopefully tomorrow will be an even better day!


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## SupportiveMom (Aug 27, 2014)

Big hugs sending you lots of support!


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## SupportiveMom (Aug 27, 2014)

So I'm a bit confused. He chose not to get the epidural? If he chose not to why not? Excuse my ignorance or if you said this in another thread but I'm trying to wrap my head around the different surgeries. The resection cuts away and just joins back together? No ostomy?


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## Clash (Aug 28, 2014)

SupportiveMom, C had an ileocecectomy, which is the removal of part of the terminal ileum(lower part of small bowel), the ileocecal valve(where small and large bowel connect) and the cecum(first part of large bowel). Once that part is cut away the ends remaining are connected. No ostomy required.

C chose not to have an epidural and instead to have a pca pump. It was his choice of not having the epidural although the doc(thanks maya142) did discuss the possibility of ineffectiveness due to his SpA. Also, apparently it is something inserted(for med) and he didn't want that.

Doc just came in. Catheter had to be reinserted last night. C is burping a lot with clear liquid(jello, Gatorade, broth). Doc said it means liquids were not going the right way and bumped him down to ice chips. Incisions look good and he is walking well.


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## DJW (Aug 28, 2014)

Sorry to hear that.


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## SupportiveMom (Aug 28, 2014)

I hope things get flowing in the right direction soon. Thanks for the info about the type of surgery. Sometimes I think us parents should be given honorary medical degrees with all this jargon!


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## Mehita (Aug 28, 2014)

DS had itching with the dilaudid as well. It got pretty bad and they switched him to a different version of it with one less chemical that they thought might be causing the itching. Unfortunately, the second one was even worse. 

Hope things continue to improve. 

Any idea why the liquids are coming up?


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## Clash (Aug 28, 2014)

Mehita, the surgeon just said that his bowels aren't moving yet and then that liquids may be stopping at resection site and not going through.

Later in the day, C said he felt gas moving, nurse checked for ileus then said it's a sign his bowels were waking. About an hour ago C had a bm. It was sorta uncontrolled though he made it to the bathroom. Nurse said it was another good sign and doc would probably move him back to clear liquids tomorrow.


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## Clash (Aug 28, 2014)

So unique aspect of a teen in the hospital(I stay in the room with him), you get kicked out when a pretty girl calls!

I wonder, but haven't asked, since C is using the button less are they also lowering his dose? It does seem now that he presses it less often that when he does press it it knocks him out for a bit.

I think they are going to be hard pressed to convince C they need to remove the catheter again. I think a bit of a phobia is working up that he won't be able to go on his own.

Saw the incisions, they look good and aren't very big. The surgeon also fixed a hernia C was born with behind his belly button on his way in to resection


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## Maya142 (Aug 28, 2014)

Just wondering Clash, when is he expected to go home? 
I hope things continue to go relatively smoothly:hug:!


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## Clash (Aug 28, 2014)

I think it depends on how things progress. I've made a point of not flat out asking that question in front of C. I would just hate for him to get his hopes up and then disappointed if it doesn't happen. He knows the general time in the hospital for this is 3-5 days so there is that. 

He is meeting some marks such as passing gas, a bm, and regular walking but still is on ice chips so I'm guessing at least a couple more days unless things start progressing more quickly.


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## kimmidwife (Aug 28, 2014)

Clash,
So glad to hear things are moving in the right direction and he is doing well! Now that he had a BM they probably will advance his diet pretty quickly. Hope he tolerates it and maybe can go home by Saturday. Will be keeping my fingers crossed for him!


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## Brian'sMom (Aug 28, 2014)

Hopefully he can just relax and not push to get home too quickly. You're in a good place right now. Its too bad he has to worry about the pain pump thing. However, after my son's ileostomy they only let him have the 'real' pain meds (by mouth - no pump) for a few hours after surgery and then switched him to tylenol by evening!! I think they try not to give kids big time pain meds for very long.


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## Sascot (Aug 29, 2014)

Glad C is improving, must be a relief to have got the first bm out the way . Hope all goes smoothly when they do take the catheter out. Must be feeling a bit better if he's chatting to a girl :lol:


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## Clash (Aug 29, 2014)

Today, 3 days post op:

Doc took catheter out he told C there were no guarantees that it wouldnt have to go back in but that would be the case any time they took it out.

He has had another bowel movement so Doc moved him back to clear liquids.

If all goes well and C progresses through everything(peeling, bms, clear liquid to soft solid, walking regularly) then we may be released Sunday but if all goals aren't met it may be longer. 

So, C is using the pump less and less but not all due to lack of pain. He says when he sits/stands he gets dizzy and headachey and he thinks it's the med. Is there anything to combat this? It's like a viscious circle, pain med = dizzy so no standing, no pain med = pain so no standing.


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## Maya142 (Aug 29, 2014)

You could try a different pain med or a lower dose. Ask the pain management team (or whoever is in charge of the pump). They usually have ideas!

Will keep my fingers crossed everything continues to go well. I hope peeing isn't an issue, and C is able to go home soon.


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## Clash (Aug 29, 2014)

Yes I think I may mention it again to the nurse because their answer is if your dizzy don't get up. Which seems to slow the process of progressing to me.


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## momoftwinboys (Aug 29, 2014)

Thinking of you guys.  Wishing C a speedy recovery and a long remission.


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## Catherine (Aug 29, 2014)

The dizziness could also be from bed rest.

Does he have low blood pressure?

It could also be orthostatic hypotension.


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## Clash (Aug 30, 2014)

Catherine, I thought of that too but blood pressure is normal when moving from lying to sitting and tostanding.

So they removed the pain med running in the background and the dizziness has almost subsided. Also, once the background med was removed C was able to go without the catheter.

He has had some Gatorade and tried some jello but it does cause him to burp a lot so it is slow going. Not sure with his liquids repeating on him if they will move him up to soft solids today.

All other things continue to improve. C has a habit of thinking of tomorrow problems today so we really had to stay on top of him to use the pain pump as he thinks it is slowing down progression. We've tried to explain that white knuckling it and staying tensed up from the pain does no better on your body's healing process.


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## DustyKat (Aug 30, 2014)

Sorry for being late to this Clash. :ghug: 

So…

So fab to hear that all went well with surgery! :dance::dance::dance:

The pump incident - That is bloody ridiculous, someone needs to go back and do their maths. The anaesthetist calculates the dosage of the drug over a 24 hour period and how much would be required, volume wise, if the button is set at say 5 minute intervals. 

The dizziness - that is a common side effect of the pain med, bless him. 

Digestion - Just my thoughts on things but I think they need to step back and not rush things. They need to take it slowly rather than going to and fro with things, better for C that way as it doesn’t build up his expectations only to have them dashed again.  

Thinking of you guys and sending mega loads of luck that this brings YEARS of remission! :heart:

Dusty. xxx


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## Clash (Aug 30, 2014)

Thanks Dusty, we haven't seen the surgeon today so not sure what the plan is.

I to wish things would move slower instead of back and forth. The Doc threw out the Sunday discharge date if all goals are met and I worry C is gonna be upset if it doesn't occur. The Doc did say only if markers are met if not it will be longer but I know C is only hearing Sunday!

I'll have an update later if the doc comes by. C is still not taking much liquid or jello.


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## DustyKat (Aug 30, 2014)

:hugs: to you both. 

Matt’s stay was 8 days from the outset. But I know how heartbreaking it is for them to have projected discharge dates only to have them moved back.  

I know C has used his bowels but even at this late stage have they ever suggested sugar free chewing gum to help with getting the bowels moving faster? Some studies show it doesn’t make a difference but it certainly does no harm and some surgeons swear by it. 

Dusty. xxx


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## Clash (Aug 30, 2014)

No, we have been offered popsicles, jello, broth and Gatorade. I'll mention the gum, thanks for the tip.

I'm really confused by the bowel waking thing. I mean he is passing gas, had bms mostly mucus but when he tries to eat the jello we get lots of burps and doc says to back off because that means the liquids is turning around at the surgery site. So does that mean his lower bowels are awake but his upper bowel isn't?

They had some issue with the IV meds last night, not the delivery I don't think but with the settings or recording the settings. Anyway they were in the room all throughout the night, had to bring in the charge nurse and kept having to come back. This all kept C up so this morning he has a bad headache and he is just drained from it.


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## awmom (Aug 30, 2014)

Hi Clash, sorry for not posting sooner but have been thinking you you both.... reading your thread has brought back memories.  I hope the pain is well under control and his bowels are continuing to wake up. Those first days sound like they were rough, but it will all be downhill from here on out.  It sounds like they are taking good care of him and keeping a close watch.  

N stopped using the pump as well after 3 days because the morphine made him nauseous, so they had him on IV tylenol.  He was in hospital for 5 days and the recuperation at home was easy compared to the hospital experience.  

Hope you see lots of progress today!


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## DustyKat (Aug 30, 2014)

If he is passing reasonable amounts of gas, which means he has bowel sounds, and is opening his bowels then that would normally rule out an ileus. 

When you say he is burping does he have any other symptoms like…bloating, cramping, nausea, vomiting? 
An absence of these would also indicate no ileus is present. Certainly hiccoughing can be a sign but on its own would be a stretch to point to the bowel not working. 

I hope they change the pump today then! Poor C!  

Dusty. xxx


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## Maya142 (Aug 30, 2014)

Poor C! It's so hard to sleep in hospitals! M wasn't even really "sick" when we were admitted and she came home with these dark circles...
I hope things turn around for C soon!


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## Clash (Aug 30, 2014)

Ok doc just came by and here are the orders:

He is coming off the pump and fluids. He will be on oral Tylenol and will have dilaudid pills if he needs them. There is only a bit of bloating much better than yesterday so they are going to try his system on solids.

He is so glad to be coming of the pump because he wasn't really using the button anymore and he was tired of being tied to it. He is a bit concerned about losing the fluids but thought he may be able to drink more if they weren't on board.

The Doc said he didn't have a time table but did feel if he did well then he could be out tomorrow or the next day.

I did notice when he went to the bathroom a little while ago he was no longer walking slow and little old man like so I'm guessing that isn't as painful. Since removing the dilaudid running in the background he hasn't been dizzy so that may be playing a role too.

I guess we will see how it goes, hoping for nothing but good things to come!


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## Mehita (Aug 30, 2014)

Our stay was 6 days and after day three things really turned around. I hope it's the same for C! How are his spirits overall? How do his incision(s) look? And how are you doing?

Like awmom said, this is def bringing back memories. Especially the "old man" walk!


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## Clash (Aug 30, 2014)

The incisions look really good. C's spirits are good. He is ready to not be hooked to the iv pole but other than that he seems good. We are so far from home that visitors aren't possible but he is skyping, fbing and tweeting.

I'm good, I'm definitely ready for my bed. Even with the IV issues we had I am surprised at how smoothly things have gone. I guess you just start expecting the other shoe to drop. I truly thought from the surgeon's description that C's pain would be this huge obstacle. I'm not saying he hasn't had pain but none that brought him to tears or had him asking for relief. I would say his uncontrolled flare before dx was a lot worse on both of us.

I will say that if we are here much longer I may abscond with one of the therapy dogs(golden retrievers). Omg! I'm so in love with them! Chase may need a therapy dog after surgery...hmm...wonder if I can convince the Hubby of this! I mean purely medical and health purposes, of course! *wink* * wink*


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## valleysangel92 (Aug 30, 2014)

So glad C is doing well and starting to get around easier!  I bet it's such a relief to him not dragging that pump everywhere. 

It's amazing to me how different things are for you guys. With my surgery, I was allowed to sip water as soon as I was back on the ward, and could eat soup the day after surgery, then the day after that my surgeon told me to eat what I wanted as long as I kept my fibre intake low. He even told me to have my parents bring food from home. However they didnt even try and get rid of my catheter until the afternoon of the third day, when they were sure I could walk to the toilet without risk of hurting myself, although I had to buzz the nurse every time I wanted to go anyway (to unplug the pump from the wall).

I'm so glad his pain seems well managed and his incisions are good!  If hes at all worried about scarring, tell him I can hardly see mine and it's only been a year and 2 months. 

So jealous of you guys getting to see therapy dogs!


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## LauraJ (Aug 30, 2014)

My husband was only allowed gum for a few days, they wouldn't give fluids until he had passed gas, or had a bm, for resection in vancouver it's the standard recovery programme for any GI surgery.  Something to do with the chewing awakening your body's natural responses, but without taxing them.
Hope his recovery is smooth. Things are so different from when my husband had his original surgery, back then it was 3 month TPN after a resection he was stunned to be to told he could go home in a week this time!


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## Clash (Aug 30, 2014)

So this evening has sucked. C was doing well then he gagged a couple times. He still ate a bit of food then started really complaining that he felt air building in his GI tract. Now chills, no fever but achy and bad bloating pain.


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## Clash (Aug 31, 2014)

Ok well that wasn't long lasting! He took a nap woke up took a walk over the hospital. He ate a snack, the drank a lot of Apple juice and finished the evening watching football.

He got up this morning, took a shower, got dressed and took a stroll now he is eating. Woohoo!


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## DJW (Aug 31, 2014)

Glad to hear it.


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## Clash (Aug 31, 2014)

And now we are being discharged!


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## DJW (Aug 31, 2014)

Fantastic!!!


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## Maya142 (Aug 31, 2014)

Glad he's going home :dance::dance::dance:!!!


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## Mehita (Aug 31, 2014)

There's no place like home!


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## Sascot (Aug 31, 2014)

Yay, great you are going home!


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## Clash (Aug 31, 2014)

We are home! C is chillin' in his room watching a House marathon and waiting for the Madden 15 Xbox one game to arrive. Hubby is in town picking up px and game and C friendly groceries! C has had no need for his dilaudid pills yet today. 


It is so good to be home. Thanks for all the support.

So, C is moving really well just wears out quickly.


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## valleysangel92 (Aug 31, 2014)

Yay for being home! Glad C is doing well and not in too much pain.


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## Tesscorm (Aug 31, 2014)

Have been away; just back today and getting caught up.  Sooo very glad all went fairly smoothly for C and that you are both home!  It really sounds like he's doing well and I hope he continues to improve at this pace!  Seems like he's recovered fairly well so far!


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## MamaHenn (Aug 31, 2014)

So glad to hear that things are getting better and he is home.


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## kimmidwife (Aug 31, 2014)

So glad to hear he is home and doing well! May it only continue!!!!!!!


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## awmom (Aug 31, 2014)

Really glad he is home and able to eat and move comfortably!!!


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## Gmama (Sep 1, 2014)

There is nothing like sleeping in your own bed! So happy things are going well & you are home!


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## Maya142 (Sep 1, 2014)

How's C doing Clash?


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## Clash (Sep 1, 2014)

Really great so far, Maya142! He spent the day catching up on school work. He took a shower this morning and had been up and around off and on. His appetite is enormous, which surprised us because the doc said he might not have an appetite for a week or so.

His only complaint has been that when walking the way he postures his body to keep the surgical site from hurting causes his back to hurt. He says he needs to pop his back so bad but doing so would hurt his abdomen too bad.


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## Maya142 (Sep 1, 2014)

School work :eek2: Way to go C! That's great that his appetite is already better!

I'm sorry his back hurts so much. M is having a similar problem because of the ng tube and how she has to lie when it's in. We've been using her heating pad a lot more often. Also, ice and Lidoderm patches (requires a prescription but doesn't have to be a rheumatologist - M gets her from our GP).


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## araceli (Sep 1, 2014)

Sorry I am late, I am having internet problems. I am so glad surgery went well and you are finally home. Wishing C a speedy recovery.


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## Clash (Sep 1, 2014)

Ok guys, can recovery be too quick? The surgeon said that C was on regular diet, no restrictions, but not to expect him to have much of an appetite for a week or so.

Now I am bit worried because this kid is eating like crazy. He's like a hobbit with breakfast, second breakfast, elevenses(sorry LOTR quote). But, honestly, he is eating a lot. He has had 3 meals, 2 bowls of cereal, Mac and cheese(with seconds) and I just went down to the kitchen and he was eating again. Could he hurt himself?


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## Mehita (Sep 2, 2014)

DS did the same thing. I think it's ok as long as what's going in is coming out at an acceptable rate.


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## LauraJ (Sep 2, 2014)

He's probably making up for lost time! My husband had his duodenal ostomy reversed 6 weeks ago and he's always eating now.  I've never seen him eat so much! With a teenager it must be 100 times worse! His body is healing and needs all the energy it can get. 
I agree with Mehita, as long as everything is still moving along smoothly I wouldn't worry. You may be in for a kid who is about yo have a growth spurt too if his body is able to absorb things better. 
We were told by my kids dietician kids that are needing lots of energy need 6 mini meals a day.


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## LauraJ (Sep 2, 2014)

I read the comment about his back, my husband did the exact same thing. It might be worth getting one of those wooden massagers you can get. We have one that is like a wooden 3 legged spider and he or I were able to loosen things up in his back. A heating pad on his back may help too


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## Sascot (Sep 2, 2014)

Sounds like things are going well. Glad he feels like eating. I agree, so long as the food is coming out the other end it should be fine. If you're worried you could always double check with the surgeon.


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## Tesscorm (Sep 2, 2014)

As long as he's continuing to feel good, I think the eating should be fine as well.  But, if you want to lighten up the 'workload' on his bowels, make some of his meals low residue/fibre and/or have him drink a shake or two (between meals) and see if that satisfies his hunger.  I know S will just grab a shake if he's hungry but is too rushed to sit and eat something.


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## SupportiveMom (Sep 2, 2014)

Love the elevenses comment ! Hope he makes more and more improvement!


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## Clash (Sep 2, 2014)

Ok I'm not going to fret over it. His bms are good, in fact he's said they were really formed with no mucus, so that's great!

LauraJ, C has SpA(spondylarthropathy) as well as CD so I think some of his back pain is related to that, he is using the tens unit as well as heating pads for relief but I see a rheumatologist appt in the near future. Time to get the ducks in a row and decide on a biologic for both CD and SpA. Hopefully, the rheumatologist will communicate with his GI. Rheumatologist is out on baby leave so appts are difficult.


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## Maya142 (Sep 2, 2014)

Were you able to get an appointment with the rheumatologist who diagnosed him or the ped rheumy? I bet he'll feel a lot better once he's on a biologic!
Glad he's eating well! Hope it continues forever


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## my little penguin (Sep 2, 2014)

Hope you get meds quickly to help the JSpA.
One thing that might help in the mean time
DS got a therabath
High end parafin wax ( meducal grade) for his hands.
You can take strips and dip them in the wax and place them on the back neck etc...
It is the only thing that has stopped the stiffness so far in his hands.


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## Clash (Sep 3, 2014)

His rheumy appt isn't until Oct. It is with the original one because the wait list was too long for the ped.

His moving about a little better, more straight up so not as much back pain now.

He is still eating well and got out and about yesterday.


His follow up is two weeks from now and they will be repeating nutrition labs.


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## Clash (Sep 3, 2014)

I am truly just in awe of how quickly he is recovering! He is eating well, normal bms, no serious pain and getting around really good. He is no longer taking the Tylenol on a schedule and hasn't asked for any today. He has mentioned going on back to work once he has all his school work caught up.

I'm calling the GI tomorrow for an appt to discuss the maintenance med. 

I won't say that I wasn't anxious about surgery but C's attitude about it did make it a lot easier. There were definitely bumps, I mean apparently anesthesia and pain meds completely shut his bladder down but on the whole C has done well. I just hope with the right maintenance med C can enjoy a long remission.


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## my little penguin (Sep 3, 2014)

Glad he is doing better


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## kimmidwife (Sep 4, 2014)

I am so glad to hear how well he is recovering! It is just amazing to see how teenagers can heal so fast and a good attitude really helps as well! 
Reading this post made me so happy. It is so good to hear when one of our kids is doing so great!!!!


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## Farmwife (Sep 4, 2014)

:dance:


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## Sascot (Sep 5, 2014)

Glad to hear things are looking good and C is feeling well


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## araceli (Sep 5, 2014)

So happy C is doing so good. Hopefully this is the start of a very long remission.


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## Mehita (Sep 8, 2014)

Woohoo! 

Next up... reminding him that even though he is feeling great, he still needs to chill. No lifting, no marathon training, no go go go. The six weeks of no activity felt like forever for us. DS was chomping at the bit at 3 weeks! Joined the tennis team a week after his restrictions were lifted. Crazy kids.


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## Clash (Sep 8, 2014)

I know, Mehita!! C is already wanting to go back to work. I have a call into the surgeon as his instructions were fairly vague. He said absolutely no lifting of anything over 10 lbs for six weeks but that C had to determine when he was ready for other things. Well, C thinks he is ready to start back to work.

It wouldn't be heavy lifting or anything but he would be on his feet for many hours and I would rather him just take it easy until surgery follow up and GI follow up. I don't want anything to interfere with healing!

Teens!


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## Jmrogers4 (Sep 8, 2014)

Glad he is feeling invincible. Hope the healing and recovery continue by leaps and bounds.


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## Clash (Sep 9, 2014)

The work question may answer itself. He spent the day before yesterday working on his audio system in his car. Yesterday, the middle of his back was really bothering him. I think SpA but he is always quick to say no not the same place or feeling. Anyway, he fell asleep before 8pm and woke up at midnight needing pain med for his back.

Follow up is next week so I guess we will go from there. Week after that is GI appt so more info there.


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## Clash (Sep 16, 2014)

Yay staples came out today. All is well. We explained to the surgeon that this past Saturday C noticed a lump or knot located where surgery qouldve been, it was tender to the touch and sore. Surgeon felt all around, said he wasn't worried about it and things looked great.

C goes to his GI two weeks from today for decisions on maintenance meds. 

I'm really surprised at how little of the pain med C has used. He came off the Tylenol after the first day discharged and in all has taken two of the dilaudid(1 pill halved for back pain and 1 pill a few days later for the same).

Restrictions now: no lifting over 10 lbs for 4 more weeks.


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## Tesscorm (Sep 17, 2014)

Great news!!!   Really so glad he's recovered from the surgery so well. 

(How's J doing?)


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## Clash (Sep 17, 2014)

J is not so eagerly awaiting her scopes next Monday. She has been taking her vitamin B12 nasal spray. I am wondering how long you wait before retesting B12, I'm going to ask doc, but I am assuming 3 months? Maybe 6?

She is really busy with college classes and work and social life. She complains of fatigue but honestly, with the constant go, go, go I'm not sure if it isn't just normal?


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## Tesscorm (Sep 17, 2014)

I've mentioned this before and may help in the scope prep for her...  (S had a horrible first scope, but his second, was no problem at all!!)

A few days before the actual prep, I started S on low residue foods (white bread, pasta, chicken, etc.), the day before 'prep' day, I gave him only broth with noodles and a little chicken and shakes, then followed instructions on prep day.  His 'prep' day was absolutely no problem!  It was as if he wasn't even prepping, it took nothing to clean him out.  (The first time, hours of nausea, vomiting, pain, enemas, etc. - horrible, horrible experience - although this was when he was being dxed so that probably contributed to the difficulty.)


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## Clash (Sep 17, 2014)

Yes, I think this is the schedule we are going to follow as well since she will be prepping in a hotel. Of course I won't be with her the day before prep but I've given her a regimen...hope she follows it!


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## Tesscorm (Sep 17, 2014)

That's all you can do... when they're away.  Sit and hope they listened to you.


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## SupportiveMom (Sep 19, 2014)

Update? Hope things are looking brighter every day!


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## Clash (Sep 19, 2014)

Things are going well. Staples are out, he is doing most anything except lifting over 10lbs. He has that restriction for 4 more weeks. He isn't packing on the pounds but the surgeon wasn't concerned and felt we would know more when the GI appt rolled around. No pain left from surgery, maybe a little more careful when jumpting, running etc but he's still got butterfly stitches for a couple of weeks.

He is going with friends to see the Braves play Sunday and looking forward to it. He is eating normally and seems to be on a better sleep schedule(almost normal) which is awesome!


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## Catherine (Sep 19, 2014)

glad to hear recovery is going well.


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## kimmidwife (Sep 20, 2014)

Glad to hear is continuing to recover so fast. These kids are just amazing!


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## Clash (Sep 20, 2014)

I just want to get this weight thing figured out. I hope this is something that given time to heal will come naturally! But yes I'm estactic that he is recovering well!


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## Tesscorm (Sep 21, 2014)

I'm sure it's somewhere above and I've missed/forgotten but what is the plan going forward, as far as meds?  

IDK from personal experience but I would think, after surgery, the body exerts extra energy at healing; perhaps this causes slower weight gain for a little while??  Regardless of meds, if you could convince him to drink a couple of shakes a day, it certainly wouldn't hurt.  S's GI said he didn't feel it was necessary once S was on remicade but, I convinced S otherwise.  (I still think the extra calories and nutrition can only help.)     For a while, the selling point was the extra protein in the high protein shakes so he could 'build up' a bit (as long as he was drinking them, I was fine with whatever 'selling' point worked!) and now, it's just become habit for him.

But, still really glad that he's just recovered so well!!


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## SupportiveMom (Sep 27, 2014)

Reread the whole thread and have to say it is great to see the progress. So it has been a month now. Looking back is there anything you wish you knew then or wish someone told you or would have done differently?

How is everything going?


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## Clash (Sep 27, 2014)

Supportive Mom, C is doing well. He is back at work and not having issues with that. He still can't lift over 10lbs for two more weeks.

He has two laparoscopic cuts(1 at his underwear line and the other on his lower rt side) then a 2 in cut through his bellybutton(vertically). The are all healing well and aren't causing issues so far.

Going back over everything in my mind I think I would've listened to C more during the hospital stay about the pain meds and his inability to pee. He wanted the pain pump gone or backed off from the time the catheter was removed but we(the nurses and I) resisted. But when we gave in and they disconnected the pump he handled the pain with Tylenol and didn't have the fear or discomfort of not being able to pee.

Overall, I think C had an good experience. There was only the blip of the pain pump being out the first night and then us not listening when he was ready to back off the pain med later on. This didn't affect his recovery, he was still up and walking and sitting up on schedule so I guess nothing to really complain about.

He goes this next Tuesday to the GI and we will decide on his treatment going forward.


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## SupportiveMom (Sep 28, 2014)

Thanks for the info. I am glad to hear of the positive experience. Keep us posted. I am hoping D's surgery goes just as smoothly and this gives me things to think of & look out for.


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## Clash (Sep 30, 2014)

We had the appt today with the GI. 

C will be starting back on remicade. Instead of the loading dose schedule of 2 weeks, 4 weeks, 6 weeks he will do his first dose then 4 weeks later second loading dose, then 4 weeks later another loading dose. The GI said statistically allergic reactions occur on second loading dose(at 2 weeks). He said although it isn't documented in the PI, docs have found this revised schedule has cut down allergic reactions when
 re-starting remicade after discontinuation.

C is back on a calorie goal intake, GI went over calorie goal and checked out the app C will use to record and insisted C take in 2 boost or ensure plus shakes a day. We will follow this regimin until next appt and then decide what to do.

Lastly, C's wound has some issues. It's has granulomas(I think that is the word he used) and the wound was breaking down. For this reason, he is to see a wound/ostomy nurse. I make the appointment tomorrow.


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## Maya142 (Sep 30, 2014)

I'm curious Clash, why Remicade and not another Anti-TNF?

M has been on Remicade 3 separate times and hasn't had any problems. The first two times we did the normal loading doses and the third time we did 0, 3 and 6.5 weeks (not exactly sure why, but that was with the high dose Remicade). We do benadryl and tylenol (by mouth) and nothing else. So far, no reaction (thankfully). I hope it goes smoothly for C!


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## Clash (Sep 30, 2014)

Really the decision was left up to C. The GI said they removed 10 inches of bowel and that there were deep chronic ulcerations and fissures with narrowing. He is hoping that piece of bowel was just too far gone for pharmaceutical intervention and now that the bowel is pristine that anti tnf drugs will work. He's willing to give them a shot anyway. The plan is to try remicade and by the time we have a yea or nay as to its efficacy it will be time for C to prepare for college and we can decide if we want to try another anti tnf or give up and move on.

I hope that isn't too garbled to understand, my mind is swirling!


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## kimmidwife (Sep 30, 2014)

Keep us posted about what the wound nurse says. I am trying to think of ways to promote wound healing. I have used colloidal silver droplets to promote healing on a wound. It was a long time ago but I remember it did help. Did the doctor say why he thinks it is happening?


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## Clash (Sep 30, 2014)

He said a lot but it was involved and I was a bit shocked so it all sounded like banana, banana, banana. I am hoping the wound/osotmy dept will explain everything.


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## SupportiveMom (Sep 30, 2014)

Thanks for the tip on colloidal silver kim.

I hope things go smoothly for you Clash with the Ostomy dept.


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## Clash (Sep 30, 2014)

Supportive Mom, thanks. When we were at the hospital I saw the wound/ostomy dept and thought it was weird the two were combined but the GI said it was common. We are going to a hospital closer to home. I think it sorta surprised C when he said ostomy since C doesn't have an ostomy!


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## my little penguin (Sep 30, 2014)

Not sure on why remicade again if it didn't stop the inflammation for progressing last time ....
As far as granulated tissue most stomas ( gtube or ostomy) tend to for it.
There is a special cream 
Trimethosolcone (???)


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## LauraJ (Sep 30, 2014)

I know it sounds silly, but have you tried diaper cream? Zinc is needed for healing wounds, as he is still recovering from surgery he might not be absorbing as much as his body needs, so maybe some topical zinc may help. My kids call diaper cream "magic cream"
My husband has granulomas gangenosum and was given super strong steroid cream, 2 applications and the wounds he had had for months disappeared.
But seriously, give diaper rash cream a try, make sure it's the highest zinc oxide you can find, or even the kind for in continence, my husband used it after his duodenal ostomy was reversed, it's 32% zinc


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## Clash (Sep 30, 2014)

We are hoping that with the long term chronic inflammation and damage removed that the remicade will be able to get the job done. Among the tnf Alfa meds it is still the one that has been proven the most effective. It still may be that anti tnf meds don't work at all for C but C isn't ready to give up on them or remicade in particular since it changed his quality of life so entirely after the first infusion. And as of Sunday, he turned 18 years old.

Yes, I understand the granuloma/stoma aspect but C doesn't have a stoma, gtube etc. I just never connected the IBD surgery wound and the ostomy dept since he doesn't have a stoma. I've heard of would healing depths just didn't realize they were combined with ostomy care.


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## Clash (Sep 30, 2014)

Thanks for the tips on the wound healing. I'll bring them up at the visit with wound clinic. I doubt C would be willing to try anything I offered up without first discussing it the nurse/doc whoever we see. Kids. He wouldn't even let me bandaid it when it was leaking so he could get senior pics done.


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## Maya142 (Sep 30, 2014)

Remicade did not work well for M the first time. The second time, at a higher dose (and we added MTX, just 15mg) it was a miracle! It only stopped working when M refused to take MTX because it made her so nauseous.
Don't lose hope, especially if his GI thinks it's worth a shot!


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## kimmidwife (Oct 1, 2014)

Clash happy birthday to your son!!!!:bdayparty:


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## Clash (Oct 1, 2014)

Thanks!

So, we have to go see the surgeon instead of wound care as insurance requires it until 90 days after surgery. The GI was hoping we could get around it with a surgeon release but no such luck. We see the surgeon next Friday, I asked could we try the various tips mentioned but the nurse said do not apply anything and leave completely uncovered until appt.


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## SupportiveMom (Oct 1, 2014)

Happy birthday to your son!


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## Tesscorm (Oct 1, 2014)

I hope the wound healing doesn't bring on any complications.   His recovery has all gone so well, I hope it continues that way! :ghug:

And, of course, :birthday2:

...  but, regardless of age, they're always our babies! :heart:


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## Clash (Oct 1, 2014)

Tesscorm, C was rambling about that last night. He said, "In all matters, that include freedoms and independence, we should consider him grown but in anything else I should treat him as my little boy." I told him it doesn't actually work that way and he'll always be my little boy. They always want the best of both worlds! Ha!

Starting with yesterday's appt. I had C take control in many ways. I told him to write down all of the concerns he wanted to address. I told him that I would offer advice if he asked for it but he needed to start recognizing, acknowledging and addressing the facets of this disease and how it affects him. I thought he did really well. He made a list of what he wanted to discuss and then asked my opinion. He had covered everything I would've except some nutrition labs the surgeon had mentioned but never followed through with.

For his first infusion he has made a list of labs he wants them to run and has included a good many of what I would have asked for. It makes me so proud to see him taking control of his illness and it's management! Though it is hard a times to be sidelined to some degree!


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## araceli (Oct 1, 2014)

Happy Birthday to your son. Good luck with the surgeons appointment.


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## Tesscorm (Oct 1, 2014)

Clash, he really sounds like such a responsible young man!!  Moving from teen to (young) adult isn't always easy for either (teen or parent) and it's not a straight line...  To be honest, I think he's kinda right about 'in these matters...', I'm finding that's how it is with my two...  their independence/control in some areas has grown more and more but, in other areas, there's still quite a bit of 'coordinated effort' .  Overall, I think we've had only a few bumps in the road.  But, definitely easier when you have someone that shows the maturity that C has shown!  :thumright:


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## LauraJ (Oct 1, 2014)

Apparently wound and ostomy care are combined as technically an ostomy is an open wound according to a nurse friend.


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## Clash (Oct 1, 2014)

LauraJ, yep that is how the GI explained it. The nearest hospital with this service actually has a wound care center with hyperbaric chambers and is divided into diferrent specialty segments.. C will see surgical wound care, a wound/ostomy nurse comes into play if it is accompanied with home health care which his is not. Of course, all this is moot since we are under the care of the surgeon for two more months.


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## kimmidwife (Oct 2, 2014)

Sorry to hea that they are making you wait to see the surgeon. It I guess it makes sense in some ways. 
It sounds like he is really growing up. That is awesome! I am so not ready to hand my girl the reigns of control yet. She turned 17 last week.


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## Tesscorm (Oct 2, 2014)

Not to worry Kim...  it's a gradual process!  S only takes the reins under my control!  :lol:  Actually, I think our kids tend to surprise us with their knowledge and understanding (at least, I've often been surprised :blush.  I think my role has become more as someone who makes sure things are coordinated (ie follow-up scope not scheduled during exams) and recommendations followed up...  S certainly hasn't had alot of complications but, even when his GI was recommending the move to remicade, S's questions and use of terminology surprised me.  They may not say much but, I think they do listen and learn.


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## Clash (Oct 2, 2014)

I agree Tesscorm, there are some things C easily takes care of but there are others that he doesn't even ask to handle. I think C finds it easy to assert himself and be confident with his GI because they have such a good relationship(love this ped GI and dread when we have to move up) but I don't think he's be as in charge with the rheumy, different personality altogether.


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## Clash (Oct 11, 2014)

C had his appt with the surgeon about his surgical site yesterday. He hasn't been worried about the area but when he got out of the shower yesterday there was something slightly protruding from the site and it was bleeding. I haven't often seen C painic but he did about this. He apparently pulled at it thinking it was a wayward staple the surgeon missed but blood and discharge came out and when he let it go it snapped back in. He was really panicking when he got to me. He wanted to call the doctor on the spot, I tried to explain the doc was going to say I'll see you at the appt.

I calmed him down on the trip though he was convinced it was serious. By the time we arrived at the appt he was mostly back to his laid back self. So the doc explained it was a suture and would be absorbed and gave us some new steps for care of the wound. 

Then he began debreeding the wound and oh my I thought I was going to pass out. He took the long q-tip thing and jabbed it in all the openings at least 1/2 to 3/4 inches in. I thought C was going to come off the table. He would then palpitate the area around the wound and C was white knuckling the sides of the table as the doc did this. This went on for a few minutes while the surgeon got all the drainage flowing. He then added some cream and it was over. 

He said that he isn't releasing us and set up appts to care for the wound. He hopes the wound will start closing up the proper way but if not we will try something else.

Holy cow that process looked so painful. It made my stomach hurt! C is back to himself and all is well but I may come unglued if I have to watch that process again! Yikes! 

But all's well that ends well!


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## Tesscorm (Oct 11, 2014)

Oh  that sounds horrible, poor C (and you!!)!!  Glad he's following up a bit more but I hope the wound heals cleanly and quickly! :ghug:

But, happy C is back to himself!


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## Farmwife (Oct 11, 2014)

I was ready to faint myself just reading your account. 
happy to hear C is doing well.


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## Clash (Oct 11, 2014)

I know it had to be done but whew it was hard to watch! When we were in the hospital after surgery several of the nurses warned us the surgeon didn't wear kid gloves when doing the after surgery evaluation and to expect it to be painful. They were even surprised when we told them it went well and the surgeon must've been pretty gentle. Boy, did we see the other side yesterday. The surgeon is all business anyway, not a lot of smiles or chit chat, and no warning yesterday, he just went to work jabbing and pushing.


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## Maya142 (Oct 11, 2014)

Oh geez that sounds terrible. It made me nauseous just reading it! Poor C (and you)! Was it very painful? If it was, could he take his pain medicine before he goes next time?


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## Clash (Oct 11, 2014)

C said it was really painful but only in the moment. I asked if he wanted to take pain meds next time and he said no that the pain didn't last long enough for that and he didn't want to deal with the icky side effect of the pain med(nausea/dizzy headed) for that short of benefit.


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## Clash (Oct 11, 2014)

It made me nauseated too!


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## DustyKat (Oct 11, 2014)

Oh man, I have missed SO much with this bloody access problem! :yfrown: 

So good to hear that all is going well with C, aside from the wound issues. :ghug: Shame the surgeon doesn’t have a better bedside manner but unfortunately you do trade that off with some of the better ones. I often think it is because the most time they spend with  their patients is when they are unconscious and they need reminding that they aren't always under an anaesthetic. :eek2: 

I do wound care so I would be interested know what they using on it. A pic would be nice too. :lol: 

I hope the wound soon heals up and it is Onwards and Upwards for C! 

Dusty. xxx


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## Clash (Oct 11, 2014)

I doubt I can get C to take a pic he is funny about letting anyone see it, but I will try. So the cream the doc used started with an S but I don't know if I can pronounce. Actually, it sounded like a burn cream they used on my daughter a long time ago.

Apparently, it wasn't draining appropriately and so now we have to apply loose gauze because the procedure should keep it draining? C and I really don't understand how it won't just do the same thing.

Ok my attempt at the cream name...maybe sylvadine? 

I just don't want to have to witness that whole "opening the drain holes back up" thing again. I was in a wreck as a teenager and had severe road rash wound and the hospital sent someone out weekly to debreed(think that's the word) it. It was horrible even with a pain pill they would give. Coumpounding the horribleness was the fact the wound was on my arse!


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## DustyKat (Oct 11, 2014)

Sorry Clash :redface:, C doesn’t have to take pic, I was joking as I figured it would understandably be the last thing you both wanted to do. I am just a ghoul. :lol: 

Damn good attempt Clash! :thumleft: It is Silvadene otherwise known as Sliver Sulfadiazine Cream and is normally used for burns but does have other uses and as Kim found, silver can be very good at healing wounds. 

If you mean packing some loose gauze into the wounds? This is done to hold the wound open. When you have a wound that is deep with an opening that is smallish the wound has a tendency to heal faster at the skin level and so leaves a unhealed wound underneath. In these cases it will either keep breaking through the skin or will burrow back in the other way creating a sinus. Loose packing with gauze allows it to heal from the bottom up. 

And damn good attempt with the second term too! :ybiggrin: It is debride. 

Dusty. xxx


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## Clash (Oct 11, 2014)

Thanks, Dusty! I was hearing the terms but didn't k ow if I could come close to pronouncing or spelling them correctly!

 No I meant the doctor felt his gouging and routing cleaning it out and opened it up. He is hoping from there it will do it's thing. I hope so too because packing is definitely sounding worse that gouging. Yikes!


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## DustyKat (Oct 12, 2014)

Noooooooo….packing is way better than gouging! :lol: 

Sending positive vibes C’s way for uncomplicated healing!  

Dusty. xxx


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## Sascot (Oct 12, 2014)

Wow, sounds awful! Hope he doesn't have to have that done again :eek2:. Also made me feel icky reading it, you poor thing having to watch. Hope it heals well now


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## kimmidwife (Oct 12, 2014)

Clash,
Ugh that is a horrible experience. Silva dense is an excellent cream for healing we used it a lot in nursing.hopefully he heals up fast now. Is he taking a multivitamin? I am trying to think of supplements that help with wound healing.
Dusty,
I did not know you worked in wound healing. Can you think of any supplements to reccomend?


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## kimmidwife (Oct 12, 2014)

Found a couple of articles about supplements and wound healing,
http://www.naturalnews.com/021797_surgical_procedures_post-surgical_recovery.html#

http://www.surgerysupplements.com


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## DustyKat (Oct 12, 2014)

Protein is generally the first thing I look to if a wound is chronic. For many of the people I see there are also issues with with their overall health so I look to a nutritional supplement like Resource. If adequate oral intake isn’t an issue then I suggest an increase the more protein dense foods…meats, fish, nuts, lentils. 

Also good multivitamin and at least 1,000 mg a day of Vitamin C may help speed up the healing process.  

Supplements, like Zinc, that you have already mentioned Kim are also beneficial. 

Dusty.


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## Clash (Oct 24, 2014)

C's resart of remicade is Monday and I'm so ready. He hasn't had any issues but we are still fighting with weight gain. He is so frustrated and only wants to start ng if he can keep the weight when it is discontinued, I'm not sure who could guarantee him that. He's also mentioned periactin(the GI brought it up last year) but his issue isn't lack of appetite to me. He's been keeping a calorie counter but at 18 I don't k ow when he's actually recording what he's ate and when he's padding numbers. He swears he is recording it properly. 

Wound is healing well, finally! It is so wild when it starts healing and you can see the improvement in appearance.

This kid is under weight but he is still gaining vertically, I just don't understand!


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## DustyKat (Oct 24, 2014)

Matt and Sarah have issues with weight gain Clash but I do acknowledge that some of that is due to busy lifestyles and accordingly eating cautiously during the day. 

With that said I have researched this in the past and there is a correlation between ileocaecal resection, malabsorption and being underweight whilst in remission. This applies to being underweight but stable in that weight number. I don’t have the studies at hand but I do recall that calorie intake was *not* the issue, it was nutrient and fat malabsorption that was the culprit.  

So fab to hear the wound is healing well! :dusty: 

Dusty. xxx


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## DanceMom (Oct 24, 2014)

My daughter has weight gain issues as well (but is growing taller).  We've done Periactin which helped her gain a few pounds.  Unfortunately she lost those pounds as soon as we stopped the medication.  We're doing Boost juice boxes now and she's gained 2 lbs and holding.  Because she's doing so well otherwise I'm choosing to ignore the weight issue for now.  Hopefully the GI agrees when we see him next week.  Hopefully the weight will come in time for our kiddos!


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## Jmrogers4 (Oct 24, 2014)

Glad he is doing well, Jack's weight has seemed to plateau but he is eating so I'm just letting it go for now and just keeping in eye out.


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## Maya142 (Oct 24, 2014)

M also has weight issues. The NG tube is helping a lot but I'm worried she'll lose it all when she's done with it. We use my fitness pal and I do it - at night, she just tells me what she's eaten during the day and how much. It works pretty well because I know she would forget to put in every single thing she eats!

I'm glad C's growing -- that's a good sign. Hopefully Remicade is all he needs. Hope it goes smoothly!


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## Clash (Oct 24, 2014)

Ok I had a response typed out but lately the forum has been a bugger for me and keeps timing out I'll try again later. It won't let me thank your statuses either so thanks for the replies!


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## Maya142 (Oct 24, 2014)

Will they premedicate him Clash? We did Benadryl and Tylenol because M has been on Remicade 3 separate times. Some doctors use solumedrol.


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## Clash (Oct 25, 2014)

Ok trying to post again.

Dusty, your post seems to be what C is experiencing, he isn't losing weight he is just underweight and no matter of calories change that to any degree. EN does put the weight on him but once it stops the weight slows drops to that original number.

Jmrogers4, C gained weight from a place I would deem failure to thrive when starting remicade but he also eventually plateaued as well and that is the number he still hangs around even after surgery.

Dance Mom, even though C wants to try the periactin I'm a bit on the fence as his appetite seems normal.

Maya142, they are supposed to premedicate him, draw nutritional labs as well as the labs he would normally have for mtx and I'm going to push for vitamin checks.


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## DanceMom (Oct 25, 2014)

A's appetite has always been outstanding. The Periactin didn't seem to make her eat more but she somehow gained weight. GI is considering it for her again. We'll see.


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## my little penguin (Oct 25, 2014)

Most articles I saw stated six months post op for weight gain with catch up growth the same time.
Periactin did nothing for DS 
But really increased the amount of food eaten by my oldest - non ibder .
Gained close to 10 lbs while on it.

I can say DS is still and has remained on supplemental en since dx.
When we drop it he slowly losses it been three years of 500-750 extra calories a day -everyday . Which is third of his calories almost but we still lower it occassionally to kept weight gain at a normal rate to match height.

I know for my normal kiddo it looks like this
10 lb gain quickly then 3-6 months of growth with little gain  then 3 months not gain or growth then repeat gain again.
Which is why they track over 1-2 years not months since it can vary a lot until they stop growing in their twenties.

Is there a reason he doesn't want to continue to en at night plus food?


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## Clash (Oct 25, 2014)

When C was on supplemental he started out at around 2700 calories of formula and then whatever he ate during the day. This is when he gained weight over 25 lbs. When the formula was decreased to 1500 plus whatever he ate he was maintaining the weight gained he was losing it although very slowly. When he dropped EN before surgery he lost down to the weight he was at before starting EN but stabilized there. 

He says if his nutritional labs or any other labs were off and pointed to the need for supplemental nutrition he has no problem going back on EN but just to attain weight that will not stay once the supplemental EN is withdrawn, he sees no purpose in. 

Just looking at his weight graphs from before EN, during the different levels and after. It would seem to me that full EN at 2700 calories was the only time he gained. Maintenance at 1500 didn't seem to show weight maintenance but a gradual decline. I assume at some point his nutrional labs or other labs would reflect this and his decision may have to change.


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## Tesscorm (Oct 25, 2014)

S was about C's age when he was diagnosed, so starting from the point of coming off a flare, S has gained weight in spurts.  As he'd lost 20-25 lbs pre-dx, he regained that weight fairly quickly while on exclusive and then supplemental EN.  Then, over the next couple of years, he gradually gained another 20 lbs, but it was in spurts, 10 lbs then nothing for a few months, then 5, then nothing, etc.  (There were even periods when he'd lose a pound or two but I saw that as normal weight fluctuation.)  But, throughout this period, he was taking in 1500 cal/night (5 nights/wk) of formula, plus three normal meals per day.

Since starting remi (approx. 1.5 years), he's stayed on 250-500 cals per day (1-2 Boosts) and gained another 5-8 lbs.

He hasn't had a lot of height growth, 1-1.5 inches, but he was already 5'10" at dx.  Once he regained the lost weight, plus the first extra 20, he's really just filled out.  ie developed less a boy's body and more a man's.  It certainly hasn't been 'flabby' weight gain.

Perhaps, something for you and C to consider is that the reason to continue with supplemental EN isn't strictly for 'pounds' but that the calories PLUS the *nutrition* will help his body during the coming transition from boy to man.  Whether or not S's continued use of supplemental EN has helped control is crohns is possibly up for debate but, I have no doubt the nutrition has done nothing but help his health in a general sense and any growth/development is dependent and a reflection of underlying health and nutrition.

Just my thoughts...


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## DustyKat (Oct 25, 2014)

I do think that there are valid points raised about continuing with EN. I can’t gain weight  has not been an uncommon statement in the Diet forum over the years and why this happens to some people and not others is just as confusing and irritating as most things with Crohn’s are. :yfrown: 

The studies that I referred to found that with equal calorie intake some people were actually deemed overweight and yet others remained persistently underweight. There certainly was a prevalence of underweight participants in the ileoceacal resection group hence the conclusions drawn that nutrient and fat malabsorption were the main offenders.

Is C concerned about his weight? If so then I would recommend to him to go the EN route again and for an indefinite period of time. 

If not then and if he really doesn’t want to do EN then while ever his weight is stable, and he is otherwise well, I would have a tendency to not dwell on it and let him go his own way. 

Dusty. xxx


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## valleysangel92 (Oct 25, 2014)

Hi clash, I hope you don't mind me chipping in with this. 

I really struggled with weight before my resection, and my gain was fairly slow after too. I wasn't on EN, it's not such a big thing here and because I was managing to eat they didn't bother having me on it. 

Over about 6 months I managed to put on about half a stone then I relapsed at the year mark. Now though I've managed to gain  a stone and a half on my lowest weight. I'm now a healthy 9st 2 ( around 128lbs I think) . 

It's taken me a long time to get this far and there were a lot of times where we thought I wouldn't do it. But I found that when we stopped focusing on my weight so much and started to just let it be, I started to relax more and my appetite actually got better because I didn't feel like everyone was watching everything I ate. I found that when we were worrying about my weight I felt like everyone was watching me all the time and it felt like there was pressure on me to eat a certain way. To be honest at the time I didn't even realise it, but looking back on it I can see it. 

I totally understand the worry about weight, but if he's not stressed about it then that's a good thing and may help him gain in the long run, so if he is stressed then it might be good to see if you can get him to relax about it a little. Don't worry if the gain is slow, it seems common for it to be like that. Im now 15 months post op and only in the last 1-2 months have I really stabilised weight wise. Granted this wasn't help when I flared, but mostly the last few months I've gained without making concious effort.


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## Clash (Oct 25, 2014)

Before surgery I felt like C gained weight on EN because he had malabsorption issues. I thought the fact that when it was dropped to maintenance level and he still gradually lost proved it. I thought things would change after surgery. But though he eats 2700-3000 cal a day he really doesn't gain which leads me to believe there is still a malabsorption issue.

I seem to be the one most concerned about it. C isn't really worried about the weight unless it is a sign that his CD is active. The GI would like to see C weigh more but doesn't want to lose sight of the fact that genes may be playing a role. He seems to not want to force EN on C since he feels it is evident that the weight gain is not sustained when he comes off, his labs don't indicate nutritional deficiencies and that it is apparrent he has already came through puberty.

My main concern is C is underweight, at his current weight he looks really skinny but one illness or flare and a few pounds lost he looks sickly thin.

I think it would be easier if C was a younger child. I took the route of EN being treated as a med but C's stance is if the labs for nutritional status are normal then the med is not needed. I just don't have a stanceat this time that would override that. I'm hoping that we can determine more at his next appt.

Here's my thing, C is 18, through puberty, almost 5'8" and weighs 110 to 112.


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## Clash (Oct 25, 2014)

Edit to add above, when dx'ed he was 95 lbs remicade brought him to 110 where he remained for one year or more. EN brought him to 136 but was lost when we backed down on formula and faster when we backed completely off.

Pre surgery 110 and now months after surgery 110


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## valleysangel92 (Oct 25, 2014)

I can totally understand why you're worried. I know my parents and partner used to really worry about me when my weight was low, and my consultant was concerned too, and so was I to an extent, but not as much as them. 

I can also understand Cs stance though, the en drinks feel very medical (I had a really short supply of them pre op just to build strength for a few days) and aren't the easiest to get down. Here we have powders called nutren build up and complan, you mix it with milk and it tastes like regular milkshakes. They have extra calories and nutrition and are less medicine like, I still drink them sometimes because I like the taste and they are good for iron.. Maybe if you could find something similar it would appeal more to your son and be a possible compromise?  

I know it must be so hard as a parent. I started getting symptoms at 15 but was diagnosed at 19 and that meant all the responsibility was on me, I had to take myself to hospital at university a few times pre diagnosis and I always call the shots on when I go to A+E (mum will advise but I have final say), it was down to me if I had surgery and I make all my meds choices and I can't imagine what it's been like for my parents having so little control over what's been happening or what it's like for you now as you watch C take over. All I can say is that while he will drive you crazy at times, it sounds like he has a decent head for an 18 year old and he has a great guide. Chances are that deep down he is just as daunted by taking control as you are about giving it up.


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## DanceMom (Oct 25, 2014)

Wow.... those are big fluctuations. A's weight only goes up and down by a few pounds at a time. His appearance must change drastically.


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## DustyKat (Oct 25, 2014)

That is about Matt’s weight and height Clash. Matt is never going to be huge and robust. Never has been so I can’t expect it now. He has the leanness of a soccer player but not the bulk that some do, but TBH he doesn’t look out of place on a soccer field as there are others there that have the sort of build he does. He has no problem playing a 90 minute game, 5 minute half time break, and not being subbed the entire game where many others do. I tend to gauge his wellness off this too. 

Just tossing around some thoughts and questions: 

A normal calorie intake for a man is say about 2,500 calories. But what happens though if you have fat and nutrient malabsorption? Does that mean to achieve the calorie intake you need to increase and by how much to actually gain weight? C is on 2700 - 3000 which is maintaining the weight he is at, are we looking at 3500 - 4000? I don’t know but again I think it boils down to how he feels about it and his functioning at that weight. 

I certainly hear you on your concerns about having nothing in reserve for the future as I see the exact same thing with Matt. 

Now, when you say nutritional status is normal what are you gauging that off? 

Is he supplementing with anything? As in vitamins and minerals.

Dusty. xxx


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## Clash (Oct 25, 2014)

DanceMom, his weight doesn't fluctuate without the addition of EN to make him gain. At 15, he was dx and weighed 95lbs, after starting remicade he gained 15 pounds over a few months and remained around there for 2 years(110-112) until we started EN, during the first 12 weeks(2700 cal of formula + regular diet) he gained 24 pounds over the next 8 weeks he lost it(4 of those weeks was 1500 cals of EN + food and 4 weeks were after EN was dropped).

Without the addition of EN he stays between 110-112.

valleysangel92, C doesn't drink his formula, he can't the texture makes him gag and throw it up. He takes the formula through an ng tube. We have yet to find a formula he can keep down orally.

At, 110 lbs he is at below 1% bmi and I would think it would constitute FTT.


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## Clash (Oct 25, 2014)

Dusty, I'm only going on what the GI said last visit. He said that he was concerned of what may happen if C became ill or had a flare and lost more weight but that none of the labs he had ran to determine nutritional status(i think those were the words he used) showed that C was in trouble. He talked about the height/weight of his sister, me and his father at C's age. C's father was the only one that weighed more but he was also 6'1" yet only weighed 145. His sister was 5'7" and weighed 97 I was 5'6" and weighed 95. So he says we shouldn't expect more.

When he was supplementing 2700 calories by ng tube and eating it would work out to be about 4000 calories and it would make C nauseated at times. I'm not sure if that was due to calorie intake or active CD since it was before surgery. But nausea was never a big thing for C with flares.

It makes me feel better that Matt is in the same range. C has a lot of friends and some are definitely muchlarger but I don't look at him aamong them and think he is severely thin.I mean he doesn't stand out although people are surprised when they find out his weight.

Crohns is hard, it takes something you may not even question in a non IBD person and turns it all inside out!


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## Clash (Oct 25, 2014)

Oh and to add. Right now he is on vitamin D, B 12 and folic acid. He will have a vitamin panel as well this trip I hope, because the doc thinks C may need to get b12 shots since having the resection. This will be the visit that the labs will determine that.


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## Clash (Oct 25, 2014)

One more thing(i know 4th consecutive post) I just wanted to say you guys are the best. I have all this jumble in my head and it helps so much to voice it, even if I make several u-turns in the process...

You guys truly, truly, rock! Thank you all!


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## DustyKat (Oct 25, 2014)

Both you (15.3) and your daughter (15.2) had a lower BMI than C (16.7), all three of you were/are considered underweight. 

I do wonder at times if increasing calorie intake on someone like C or Matt has the negative effect of creating issues like nausea. 



> Crohns is hard, it takes something you may not even question in a non IBD person and turns it all inside out!


It surely does Clash and boy don’t we second guess ourselves! 

Ah okay re: the nutritional status. I would suggest to the GI to include Magnesium and Zinc if he doesn't already have plans to do so. 
Just my personal opinion and no doubt you have read my thoughts before. :lol: But I do believe that in someone with ileal Crohn’s the levels of certain vitamins and minerals need to be increased over that of the general population and therefore normal reference ranges are not indicative of an ileal Crohn’s persons needs. 

Dusty. :heart:


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## my little penguin (Oct 25, 2014)

Hugs clash
I know our big concerns pre dx were DS weight he was only 50 lbs abd had been for two plus years . 

I think when the weight is so low its a valid concern on the what happens when the flare starts .... But he is not too far out post op and hasn't started the maintenance med yet .
Also if his JSpA is active then that can cause it harder for him to gain weight all by itself due to inflammation of the joints.

I think those factors complicate things a lot


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## Clash (Oct 25, 2014)

I will definitely look into magnesium again. Thanks Dusty.

My little penguin, I read something about periactin being an allergy med? If C opted for it would he stop his xyzal?


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## my little penguin (Oct 25, 2014)

Periactin is an old school antihistamine which happens the relax the stomach so it is good for stomach cramping migraines and appetite stimulant.
My oldest stopped zrytec while on it per the allergist


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## Clash (Oct 25, 2014)

Okay thanks I'll run it by the allergist.


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## Clash (Oct 28, 2014)

Ok so the first remicade went well. The nurse said his loading doses are set up at 0, 4 and 4. They have seen less reaction with this loading schedule when restarting remicade. The had some labs they did also. Hope to get them back soon. They premedicated with benedryl. 

I thought C might balk at the prospect of starting back with infusions being 18 and having time taken away from school, work etc but he said he was glad to be back on and even though it didn't do all that we hoped the first time he felt it did help and he hopes the surgery has him in a place where he can stay on remicade for a long time. Me too, kiddo!


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## Maya142 (Oct 28, 2014)

We had a (somewhat) similar schedule the third time for M - 0,3,3. Is his dose the same as it was? We have had to increase it every time she has restarted Remicade.

So glad it went well! Fingers crossed!


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## Tesscorm (Oct 28, 2014)

Glad it went well!!  And great that he's on board with it  - so much tougher when they're fighting you on it. 

I hope it does the trick and remi helps him for a LONG time! 

Do you have the option of choosing from more than one location for the infusion?  We have a number of locations available to us and one is open on Saturdays - that's usually when S goes.


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## Mehita (Oct 28, 2014)

Woohoo!


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## Clash (Oct 28, 2014)

We do have other locations we could use that are closer to us but they would be at hospitals and cost more. We would change to have a shorter trip, C is at that age where he wouldn't want them on Saturdays as it might interfere with weekend plans.

We have discussed moving the remicade to his rheumatologist's office since it is a lot closer but also feel that would be a hassle since his GI would be in more need of knowing ups and downs than the rheumy. There are remi appts where the GI will bring us in and just check over things which wouldn't be possible if remi was moved to rheumy.

C weighed 111 at appt.


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## Sascot (Oct 29, 2014)

Glad things are going well. Hope the Remicade continues to do the trick!


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## Clash (Oct 29, 2014)

There was a young man at the IV lab that had been receiving remicade for 8 years, starting when he was 8 years old. Now at 16, He is 6'1" and 185lbs. Remicade had been his saving grace as no other treatment had worked in the beginning and he spent a lot of time in the hospital. He travels over 5 hours to see the GI group. It was so great to hear such a great success story with remicade! 8 years, how awesome is that!


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## Tesscorm (Oct 29, 2014)

I guess our infusion 'system' works a bit differently - we go to a clinic that's part of a chain.  They seem to be privately owned by a medical company and aren't associated with any specific hospital or doctor.  So as they are a 'chain', I can easily change S's apptmt from one location to another.  They all have nurses and, at least one, doctor in attendance but I don't even know if they only do remicade infusions or if they do other medical treatments as well.  Because S goes on his own, I rarely get the opportunity to be there to chat with the nurses or other patients.

And great news about the young man.


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## Clash (Oct 29, 2014)

I think we have those to in the larger metropolitan areas. Our area would be to small and since their is one in the GI office then I've had no reason to look in their area.

My niece had JRA, or at least that is what they dx'ed her with when she was 6, she is in grad school now at a university in a large town and received her remicade treatments at a chain or stand alone IV lab since her doc was in her hometown and hours away. She is on humira now I think so no longer an issue.


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## kimmidwife (Nov 1, 2014)

Clash,
So glad to hear the remi went well. We are also really really struggling with the weight issues.


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## Clash (Nov 1, 2014)

Thanks! I do worry about the weight! All of C's labs came back for vitamins and otherwise. They called the hubby and he didn't ask the numbers but I'm going to pull them of the labs online as soon as C gives me the password. The nurse said the GI was really pleased with C's vitamin levels that they were all solidly normal and even on the high end of normal. So that's good.


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