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Impending surgery for teen - advice? Tips?

I haven't posted here in awhile. It's funny how things that seemed so traumatic a year ago quickly become "the new normal"...pack lunches, help with homework, drive to practice, go to Remicade infusion...

Well, we just woke up from the routine now that my 14 year old's dr has recommended surgery to remove strictures of the sm intestine. Son is well into puberty since beginning Remi, but still not putting on the size we expected (57", 84 lbs) so dr reordered labs/scans. He found that though some of the inflammation has improved with meds, there are still strictures in the small intestine interfering with absorption. He can't put on size without good absorption so we head in Tuesday for surgery.

The strictures are in the area of the sm intestine u reachable by scopes so we have to rely on MRI - we know there are several but not where they are located in relation to each other. We won't know the extent of what needs to be removed unti they get in there and check it out.

We know they are going in through the belly button and he will have a 3-4 day stay after, but little else about what to expect after or what to bring to hospital. Anyone here with experience with sm intestine resection have any tips, advice?
Big hugs
Sorry to hear about the surgery
Glad you had "normal" for at least a little bit
Paging Dusty, mehita, clash
All had surgery
One question
Is he on semi elemental or elemental formula ????
Elemental based formula only needs a few inches of healthy intestine to absorbed the nutrients needed for growth
They use it in kids who don't tolerate much food or who have short gut
I know for Ds it took formula plus biologics to get weight and growth ( at age 11 ---59" and 90 lbs)
Not saying surgery isn't needed just saying formula might help
Since even post surgery it takes most 6 months to start growing
Have you had a second opinion?
My son had a small bowel resection last August, his was an ileocecetomy, so itinnvolved a bit of the small instestine, the if valve and the cecum.

I think he was in for 4 days. It would've been shorter but he has an issue with anesthesia/pain meds shutting his bladder down. We tried to tell the surgeon but he insisted on removing the catheter the evening after surgery and that led to it having to be reinserted in the middle of the night.

Prepare them that they may have a catheter when they wake up from surgery. C knew going in and only wanted to make sure it was being inserted while under(of course for him reinsertion wasn't ughh).

C was prepared by his GI, surgeon, us and child life that he would need to be up and walking as soon as possible to facilitate getting the bowels moving and such. So coming out of surgery he knew the drill and it made it easier to know it was expected of him and would help work toward quick release.

We took his laptop, Xbox, extra chargers, plenty of socks, and some of his favorite juices and snacky stuff for when he was able to try solids( that can sometimes take 12 hrs to a day after surgery).

I also prepared him for what his menu would look like as far as soft food solids and such. So when it was time to order he would have his hopes he'd be able to have steak and potato.

C came off his pain pump early because it was interfering with his bladder function. He chose this as he didn't want them to keep taking the catheter out and having to put it back in. So when they took it out the second time he asked to be taken off the pain pump. They took the pain med running in the back ground away but left the ability to press for a dose. He never pressed so I think by the 3rd the pain was to a level that was tolerable without pain meds for him.

C was 17 so we were fairly straightforward with him and it seemed to work. He said on several occasions that surgery was not nearly as bad as a really bad CD flare episode.

If you have any questions just ask, it's just so hard to remember dspecifics without being prompted now.
Ok lots of good tips here already - thanks!

He has gained 15 lbs since dx last july, but I think due to his age and puberty stage dr needs much more than that. He gained most of his weight while on 6 shakes per day but it was traumatic the whole time. It never got any easier and he is particularly sensitive to tastes. We had to stop once school started, there just wasn't time! It literally took all day.

Seems like child life would have contacted me? Do they just come into the picture after surgery? He really has no idea what to expect, but I'm inclined to just be honest with him
Child life should have a number at the hospital to call
And you can ask for a tour prior to surgery so it's less traumatic

If not once inpatient child life typically makes rounds daily at most places
Sorry about the rough trial with formula
I know some kids on here use a tube nightly
Feed while they sleep and then pull it in the am
If taste is the problem
I dont know what hospital the surgery is being performed at but maybe there is a video of it on the hospital website? Sickkids & CHOP have videos to help kids know what to expect. Our hospital (SickKids) offered a tour if we wanted one but since she has already been a patient there we thought it was unnecessary. I always bring cards to play war or go fish etc. Its a break from technology. Every hospital trip with 48 hrs notice i let D pick out a tv series or movies. Once we did Criminal Minds, Harry Potter, Star Wars. This time its the Hobbit/ Lord of the Ring movies. Gives us something to look forward to.
Hi JenniferJuniper,

Wishing you both lots of luck with the surgery and a quick recovery and long lasting remission post-op

I've had four surgeries on my small bowel to remove 20+ strictures caused by scar tissue. Does your son's doctor think his strictures are caused by scar tissue? Because if an MRI suggested a strong inflammatory component to the strictures I would look to try other meds. Sometimes a different med will work much better or a dosage change.

It does seem that despite the best imaging they can't know exactly what they will find when they get inside...which is not easy, is it? :(

Things that I have on my hospital packing list are a pillow from home (hospital ones are so flat!), a fleece blanket, lip balm and body lotion (because the air con is always incredibly drying), something for listening to music, earplugs in case you have loud pumps going or other noise, lots of pjs and underwear ;) Also antibacterial wipes and gel.

As to what to expect after surgery that can vary a little. Has the surgeon said what kind of pain meds your son will have? Some have a PCA but I've always had an epidural. And it's possible that he will have a drain or NG tube for a short while after surgery but only if there's a need and it's by no means a certainty. They usually get you sitting up in a chair and walking a few steps the day after surgery or even the day of depending on timing. And these days most surgeons are happy for you to drink straight away after surgery and eat when you feel able to. The first passing of gas and first BM after surgery are exciting milestones!

Wishing you the best
At our surgery consult I had made a list of questions so that C would be prepared. The surgeon was fairly thorough though about how each step would go and covered most of my questions before I asked. Then our GI also went over stuff like the catheter, walking soon after and also things he should be feeling pain level wise and such.

My son used an ng tube for awhile before surgery to get his weight up for surgery. He is almost a year out from surgery and his weight has remained the same but his surgery was due to an area that was narrowed and included both scar tissue and inflammation. Also at our last scope even though it looked great biopsies showed new inflammation so that has played a role in our situation which you guys may not face.


Staff member
No experience with surgery but sending hugs!!

We have done the NG tube for weight gain and my daughter actually found it a lot easier than drinking formula. She just inserted it at night and pulled it in the morning - that way no one at school had to know. It took just a day or two before she got used to the feeling and she got good at inserting it surprisingly fast. It was actually a lot less intimidating than we thought it would be.

Sending so much good luck!!
DS had a small bowel resection when he was 12 years old due to stricturing. He had 10 inches and his appendix removed.

So, some tips:

- Ask about the appendix. They took DS's out since they were already in there. If he complains of stomach pain in the future, we know it's not his appendix. My son asked them to take pictures and the surgeon happily obliged. Yuck.

- He did an epidural for pain. Unfortunately, while it worked GREAT for the stomach region, it didn't help with pain from the catheter or sore throat from being intubated. He also had a lot of referral shoulder pain so we had to use another pain med (Tramadal?) on top of the epidural. It turned out he was allergic to something in the epidural as well. All that being said, I would still recommend an epidural. Note: they used lots and lots of tape to hold it in place on his back. Removing the tape was NOT fun at all (especially at 1:00am!). The other pain med option is usually morphine. I'm not sure they allow pain pumps in the pediatric world??

- Like Clash said, tell him about the catheter. It's uncomfortable and teens aren't used to those areas being looked at and touched, especially by pretty nurses.

- He'll wake up with an NG tube. My son didn't mind it too much. Personally, I had a hard time looking at all the green stuff coming up. DS's came out about a day early because he accidentally sneezed it up. Luckily the epidural kept the pain from the sneeze to almost nothing. Sneezing, coughing and vomiting are not fun after surgery. Laughing is a bit more tolerable... kind of.

- We were inpatient for 6 days. The first night is the hardest. You'll likely be up all night. Once you hit the 24 hour mark though, each day gets a little easier. Late on day two he was walking. By day four he was pretty bored. We maybe could have gone home a little earlier, but DS just wasn't steady enough on his feet on his own.

- Come up with hand signals and print a pain chart. Being intubated gave him a bad sore throat so he didn't talk for almost two days. I asked yes/no questions only and got thumbs up/thumbs down in response. A printed pain chart is nice because he just pointed.

- Write down everything you're told because you are going to be exhausted. After a day I lost track of the meds he was on. Had I been keeping track, we might have figured out the epidural thing earlier.

- Don't be afraid of the nurses or doctors. YOU are your son's best advocate. The nurses (usually) want to help, to keep him comfortable. Ask for what you need. Pleases and thank yous go a long way.

- Have him wear the hospital clothes the first two days (or even just be naked under the sheets). Bring his own comfy clothes for the later days. Bring athletic shoes for when he starts walking. Our hospital has a must wear shoes policy. Set a goal for walking. The first day maybe just from the bed to the door, the second day a lap around the floor. The third day three laps. Maybe get him a small treat or present for meeting his goal each day.

- We also brought a soft fleecy blanket from home, his own pillow, things to do (iPad, books, Legos, etc). For you, assuming you're staying there 24/7, a blanket from home, pillow, food, hand lotion, feminine products if needed, soap, shampoo, nail file, etc.

- Recovery will last 6-8 weeks. No physical activity. He won't be allowed to lift anything heavier than X pounds.

- Warn him that his belly button will never look the same. My son thought the scar is/was cool, so it wasn't an issue, but it may bother some kids. Initially his scar was about four inches vertically through his "new" belly button. It has since shrunk to about two inches. The plan was to go in laprascopically, but in order to examine his entire small intestine, they ended up cutting. He also has two keyholes that have essentially disappeared.

- DS hadn't eaten solids in almost a week prior to surgery due to the stricture, so he was more than pleased to be eating jello and scrambled eggs while in patient. The first two days, try to keep your food bland and not smelling nice. Essentially, he'll be NPO so smelling someone elses good stuff can be hard.

- Let him have visitors after the tubes and catheter come out. It was amazing how having a friend stop by improved his attitude and compliance! Also, take advantage of anything the hospital might offer like child life support or therapy dogs. Had I known a little Yorkie would be DS's biggest motivation, I would have requested a visit sooner.

Surgery gave DS his life back and it was wonderful. He did have a more "traditional" flare four months later which prednisone took care of, so keep in mind this isn't a cure or a final fix. This is to get him over his current issues and there will always be a maintenance med.

I think that's about it? I'm sure more will come to me as soon as I log off. Good luck!!!
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Mehita, C was 17 and he had several choices including pain pump which was preferred by our surgeon. We could've requested the epidural but I think due to C's lack of true understanding he shied away from that one. Also, the surgeon when describing it said you had to take into consideration that epidural may not work. I feel that was akin to all the things that are rare but can happen with meds but still have to be mentioned. Although I don't think that is how C perceived it and it affected his decision. Our surgeon said he most commonly used pain pump with his pediatric patients but I didn't think to ask actual age parameters.
Re:epidural vs. pain pump I've been told that epidurals work 50% of the time and that's exactly what I've experienced with it being great for 2 of 4 surgeries. That said I've found them wonderful for pain from abdominal surgery when they work and both my surgeons favor trying them. I think since they put the epidural in before the surgery that it may also allow them to use less anaesthetic.

But whatever pain relief you go with it's important that your son knows that if he gives you and the nurses and doctors lots of feedback about what he's feeling - where he has pain, how bad that there are adjustments that can be made. They can change the drug used for the epidural, increase the rate. Same for a PCA. They can also fairly quickly switch to oral continuous release meds - which is something that I actually preferred rather than having to keep pressing a button and sometimes not remembering until the pain had really built up again.

Basically he doesn't need to be in much pain from this surgery. They have lots of pain relief options available to keep him comfortable. Just occasionally you'll need to push - but that's why we have moms ;)

The referred shoulder pain (I think I've been told it's from the gas they use to expand the abdomen?) was often the first pain I noticed after surgery when I was in recovery and can be significant. For me the thing that brought a lot of relief was having someone (my mom, of course) hold heating pads on my shoulders.

As to belly buttons all my surgeons have curved the scar around my belly button so it's fairly normal looking. If it's something your son is worried about do talk to the surgeon first. I have a friend who had an abdominal surgery as a child and completely lost her belly button and it always bothered her so I know some people can mind.
They believe his structures are from scar tissue. My son has almost no symptoms except for failure to grow no pain at all to indicate a problem even though he is classified as severe. So, things progress inside with no physical indications to us. He can only be monitored thru blood, scans, and scopes and weight charts to try to watch what's going on inside.

I have a nice long list of things to pack and some idea of what to tell him to expect now. Thank you all so much!

We go in on Tuesday night (I don't know for sure until they call me tomorrow, but I think they said 7 pm??). He will be on clear liquids starting tomorrow morning so that's going to be a rough almost 2 days!
I will be following this thread closely as my 16 year old looks set to have a resection in September. He has around 20cm of his small bowel to be removed. His surgeon is talking about making a vertical incision and the possibility of a temporary ostomy in order to allow everything to heal. He reckons on a 4-5 day hospital stay and then a further 2 weeks recovery. I was quite surprised that he said only 2 weeks as I had a laparoscopic hysterectomy last week and my recovery will be at least 6-8 weeks.

Hope all goes well xx
Do keep us updated as you can. We'll be thinking about you both.

I forgot to say you might want to take some sugar free gum as there are studies that show that chewing gum post-op (I think I started the day after surgery) reduce the time it takes for the bowel to start working. Check with your surgeon that he's okay for your son to do that though of course!

Best of luck! :ghug:
I thought I also read that about gum, so I packed some.

Just got our report time from the nurse, 9:45 tomorrow morning. He has been on clear fluids all day and is still doing ok now at 4 pm so just a few more hours to go. Have a call into our GI to double check something the nurse said "small bowel resection and possible illiostomy and stoma" but surgeon had told us an illiostomy wasn't going to happen in his case. I just want to make sure they aren't mixed up.
@JenniferJuniper - I don't have any experience with surgery, but wanted to send along my support for you and your son. I hope all goes well tomorrow and look forward to your update. Major hugs and best of luck!


Super Moderator

Sorry I am late to this Jennifer Juniper. I hope all goes well for your boy and surgery proves to be just the boost he needs. :)

Both of my children have had small bowel resections. They were both open procedures with one done at our local rural hospital (unplanned surgery - daughter) and the other at a large city hospital (planned surgery - son). I will copy an old post and you will see the variations in the post op period between the two hospitals and surgeons.

Just picking up on a couple of topics that have been discussed and what was the case for us…
  • My daughter found the NG tube was the most difficult and uncomfortable thing to deal with post op. My son was told at his pre op clinic that he would not have an NG tube and that was how it panned out.
  • Both times in our case imaging was not accurate in what was found when the surgeon actually got in there. Again though that was just us and your experience may be very different.
  • If your son does use the pump, my daughter was 14 when she had her surgery and had a pump so it wasn’t an issue in the paediatric ward, tell him to press the button every time he feels he needs it. He can’t get too much as it will only infuse at set intervals. The anaesthetist will come each day and assess the use and the next 24 hour dosage. With this in mind it is best for his recovery and wellbeing if he uses the pump as much as needed rather than have the pain build too much and then trying to get it back under control again. Pressing the button when it isn’t ready to infuse also gives a reading so this isn’t a wasted exercise as it gives the anaesthetist a good idea of what is going on and how to deal with it.
This post is from 2011:
had a right hemicolectomy 5 years ago and has been in remission since that time. Her surgery was an emergency, she was undiagnosed, and so was performed as an open procedure. This is an outline of her post op recovery...

Surgery day - She was in theatre for approx 4 hours. When she returned to recovery she had oxygen, two IV's, two drains, an NG tube and an IDC (urinary catheter). She was in ICU overnight. She asked to go back to the ward the next morning. I think the surgeon wanted her to stay another day but she couldn't get out fast enough! Oxygen therapy ceased.

Day 1 post op - Moved to the ward and spent the day on bedrest. IDC removed. NG tube on free drainage and morphine IV remained on PCA (patient controlled analgesia).

Day 2 post op - No change with drains and tubes. Physiotherapy commenced. Up out of bed and gentle ambulation commenced twice a day. Although Roo refused to use a pan so started walking to the toilet that day.
Started eating ice chips.

Day 3 post op - One IV removed and condensed IV morphine and fluids into one. NG tube removed. Increasing mobilisation. Ice chips.

Day 4 - Bowels open. Commenced on clear fluids. Mobilising.

Day 5 - Tolerated fluids from previous day and throughout this day so commenced on light diet at tea time. Both drains removed and IV removed. Oral analgesia and antibiotics commenced.

Day 6 - Discharged home.

I don't know if being paediatric made a difference but each day she was visted by the surgical team twice, the physiotherapist twice, the pain management team once and the dietician once.

Sarah was in very poor condition prior to surgery so I felt that she didn't truly recover for a number of months. I would say she was running on about 80% for the first few months and reached full recovery after about 6 months. She returned to school 3 weeks after the operation and has now been in remission for 5 1/2 years.

had a right hemicolectomy in April. It was planned surgery that was required due to an existing fistula and abscess. He had a pigtail drain in for 3 months prior to surgery.

Surgery day - He was in theatre for about 4 hours and recovery for 2 hours. When he arrived back on the ward he had one IV that consisted of the PCA (patient controlled analgaesia) and other IV fluids for hydration and IV medication. He also had one wound drain, a urinary catheter and oxygen.

Day 1 post op - No change with IV's or tubes and drains. Started mobilising and about an hour sitting in the chair.

Day 2 post op - Still no change with the tubes and lines. Commenced on clear fluids and continued with gentle mobilisation.

Day 3 post op - Urinary catheter removed, still on clear fluids, mobilising well.

Day 4 post op - PCA removed and started on oral analgaesia, remains on clear fluids, started farting, only one IV now left.

Day 5 post op - Last IV removed, commenced on free fluids, bowels open.

Day 6 post op - Commenced of light diet.

Day 7 post op - Commenced on full diet, drain out.

Day 8 post op - Discharged!

Matt had no issues post op and I feel that the start of week 4 post op was the real turn around in his recovery. It was at this point that he really started to move freely and shades of his old self started to appear. His recovery has been much quicker than Sarah's. He returned to school 3 weeks after surgery, was allowed to drive short distances after 3 weeks and long distances after 6 weeks but he was driving longer distances at 5 weeks. Started soccer training at about 5 weeks as well. He is also in remission.

The life savers in hospital for them were...TV, mobile phone, iPod, laptop with DVD's, ear plugs, comfortable loose fitting pyjamas/clothes, footwear that is easy to slip on an off, like slippers, magazines/books and short visits from friends when they were up to it.

They have both been on maintenance meds (Imuran) following surgery.
Good luck!

Dusty. xxx
Dusty, this is amazing information to have! Thank you so much for taking the time to share.

I'm surprised at the number of days your kids spent inpatient. Our surgeon told us 3-4 days - do you think that's unrealistic??
My daughter also had a resection. For her the epidural was fantastic. She was in the hospital four days after. A lot of it seems a blur now. It seems most of your questions have been answered but if you think of any others let us know. Wishing it all goes smoothly and he recovers quickly!


Super Moderator

No, I don't think it is unrealistic if the surgery is done laparoscopically, the surgery is straightforward and there are no post op complications. 😊

The only thing I would insist upon is that he not be discharged until his bowels are open and he is tolerating food and fluids. That said, in uncomplicated cases these milestones would normally be reached in the 3-4 days that the surgeon is suggesting.

Dusty. xxx