C's surgery thread

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Clash

Clash

Joined
Apr 26, 2012
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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.
 
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.
 
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!
 
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.
 
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:.
 
Maya142, good luck with the ng tube for M! Keep me updated on how it is going! I hope helps her to gain weight!
 
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!
 
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!!
 
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.
 
Will be thinking of you tomorrow Clash. Hoping everything goes smoothly and the recovery is quick, and most important, LASTING!!!!!
 
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!!
 
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
 
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.
 
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:!
 
I didn't realize it was today!!! Sending prayers for everything to go smoothly!!!! And prayers for a fast recovery!!!
 
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.
 
Typically at our hospital it's versed .( aka silly juice)
They won't remember the procedure either
Win win .
 
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 .
 
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) .
 
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.
 
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.
 
Glad to hear all went smoothly! Hopefully since it was laparoscipally done he will have less pain. Continued prayers being sent!
 
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.
 
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!
 
Glad things are going ok Clash. Hope C's pain remains controlled and he recovers quickly!
 
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?
 
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?
 
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:
 
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.
 
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.
 
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.
 
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.
 
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!
 
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?
 
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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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!
 
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?
 
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.
 
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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Just wondering Clash, when is he expected to go home?
I hope things continue to go relatively smoothly:hug:!
 
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.
 
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!
 
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.
 
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:
 
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.
 
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.
 
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.
 
The dizziness could also be from bed rest.

Does he have low blood pressure?

It could also be orthostatic hypotension.
 
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.
 
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
 
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.
 
: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
 
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.
 
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!
 
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
 
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!
 
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!
 
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!
 
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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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!
 
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!
 
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.
 
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!
 
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.
 
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! :D
 
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.
 
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).
 
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.
 
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?
 
DS did the same thing. I think it's ok as long as what's going in is coming out at an acceptable rate. :poop:
 
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.
 
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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