Surgery scheduled.....doing the right thing?

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awmom

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I scheduled the resection surgery for N for mid March. He is not sure he wants to do it and neither am I. We both go from one spectrum to the next.."YES....it makes sense!!" to "NO, what if it doesn't work!!" I am questioning everything we have done for him since his diagnosis and now don't trust that I am doing the right thing. I am worried that after they do the surgery it will be more of the same, and then some. I sometimes have the feeling that we just haven't found the right med or combination of meds. His GI prescribed Flagyl for 10 days to see if it would help in any way, but it hasn't so far. He is not having any symptoms of an obstruction, just this heavy feeling sometimes when he eats too much, and sometimes has to run to the bathroom if he eats too much. Otherwise he feels fine and has a good appetite. The big issue is his weight which is so low it is alarming to me. His GI thinks ithe surgery will help, and the doc in Boston thought so too, so I guess I just have to trust them that taking out a scarred piece of intestine (ICV) will help him thrive. I don't even know how much they will take out because each has said something different. So sorry for venting, but my anxiety levels are out of control....someone mentioned wine...i think I'll hit the tequila (is it too early in the day?)
 
Hi. Tequila sounds good to me. It's night time in China.
You did not mention what kind of meds he is been on. have you tried Enteral feeding? I have read it worked for some. I hope somebody from the forum will post soon. some of the moms that have a lot of information are from Australia so right know is night over there. I wish you and your soon the best outcome.
 
Sending tons of prayers and support your way awmom. I wish we all had that crystal ball to help us see into the future and know which ones are the right choices. Unfortunately we have to make these choices with only the information we have on hand.
I know Dusty's kids have done fabulous since surgery. I know there are others and I just can't think of who they are right now. Who have had great success with surgery and saw a remarkable difference.
 
^^^ ditto to above. It's so hard to make these decisions! :voodoo: I, too, wish for that crystal ball! I'm so sorry you're in this situation... and it's so much tougher when they seem well for the most part!

As Jacqui said, Dusty's kids have done very well after surgery and have been in remission since. I think Mehita's son just had surgery as well??? Perhaps have a look through the Surgery subforum - you may find more info that will bring you some comfort in this decision. :ghug:

Hugs... :ghug: :ghug:
 
It is so hard to know (or even guess) if we're making the right decision for our children.

After the fact, I know now that surgery was the right choice for my son. He had surgery almost 7 months ago to remove a stricture in his terminal ileum. He had about 11 cm removed. It was done laparoscopically through just 1 incision at his belly button. He spent a total of 10 days in the hospital (only about 7 were after surgery, he was admitted through the ER and was in for 3 days before they decided to do the surgery).

Since his surgery, he has gained about 20 pounds and has grown about 3.5 or so inches. He is still getting Remicade every 8 weeks as his maintenance med. I'm sorry this is short and not very detailed, I'm supposed to be working! If you have any specific questions, please let me know!

:hug:
 
THANKS SO MUCH!!!! reading your posts is even better than tequila!!! I know in my heart that surgery is the way to go because for 2-1/2 years in spite of my expressing huge concerns about him not gaining ANY weight, him having done EN, pred, entocort, Pentasa, 6mp, and remicade, and his GI saying "well, he is in remission as per labs and colonoscopy, so that is probably as good as it is going to get with him" we are given another possibility for him doing better!!! Thanks all of you for your support. Tink572 It is amazing that your son has done so well since his surgery....it is music to my ears and gives me hope. I DO have a million questions.....I have to leave right now but will bend you ear this evening....thank you, thank you.
 
Have a feeling we will be having the same thoughts tomorrow, son gets all his results and have appt with the consultant! It is a very difficult decision to make, however when reading how much the kids that have had surgery, have improved, weight gain and grown its very encouraging. My son has lost weight since diagnosed 18 months ago, apart from when on steroids, all that has been lost, and bless his he his still losing weight! Agree with you, lots of questions to be asked, i have notepad in my hand and going to write down everything i want to ask so i dont forgot anything.

Look forward to hearing how things go for you and your son x
 
It certainly does sound like you have tried alot of meds, and as far as our experience goes, docs are very reluctant to do surgery. If two doctors have thought surgery is a good idea, then it is definitely worth a shot. Good luck, I hope it goes really well.
 
If I heard the same thing from two different doctors I would be very comfortable with the decision.
Some kids need surgery at diagnosis. You have tried quite a few meds without great success, so this too would make me feel like it was time to give surgery a try.
I also think the Dr's are hesitant to tell you how much they will end up removing because they don't really know until they get in there.
My friends son had surgery about a year ago and has been doing great since. He is back on 6mp (which did not work for him pre surgery) and is in remission.
You can go a long time with them not feeling well and it begins to feel normal. But when you get them healthy again, the difference is amazing.
Praying this surgery is what works for your son.:heart:

Let us know how he is getting along. (((hugs)))
 
After reading your posts I am feeling so much better about this surgery. It is scheduled for march 14! My son is very skeptical that it will work but I am trying to encourage him. My main questions are what to expect post surgery interms of eating. I know that everyone is different, but that is what is concerning my son the most. Do they get tube feelings for a few days? How soon to eat solids and a regular diet. Do they have to stay on a low residue for a bit? Tink, what did your son do to gain such nice weight? Did you supplement with anything? And how long before going back to school and to get his energy back. Bubbly, you can chime in with any questions....let us know what the consultant tells you! I am so grateful to all of you...thank you.
 
My 12 year old had his resection 7 weeks ago. Best. Decision. Ever!

He had a 6" stricture in this small intestine that had been causing ongoing issues for over a year. Our old GI kept pushing meds, but after a surgeon and radiologist poured over his two MRE's, a year apart, they determined his stricture was due to scar tissue and things weren't going to improve with meds. He was missing out on life because of that stupid stricture and my instinct kept leaning towards surgery so we scheduled a surgery consult.

Unfortunately, we ended up in the ER due to excessive vomiting, pain and dehydration with an almost fully obstructed bowel. We got that under control and went home with surgery scheduled for two weeks later. After more vomiting that night surgery got rescheduled to the next day. There was no way we were going to make it another two weeks and we felt elective surgery would be way better than emergency surgery. We can't control many things with Crohns, but we could control this.

Surgery took 4 hours and they ended up taking out 10" and his appendix. We were only expecting six inches, but like others have said, they don't always know until they get in there.

Ask about an epidural for pain. It's the latest thing for kids. Unfortunately, my son had an allergic reaction, but his pain was almost non-existent. Never above a two on the ten scale.

We were in the hospital for 6 days and he was back at school on day 11 with lifting and physical activity restrictions.

We seriously have a completely different boy now. He is so happy! He's gained eight pounds in 7 weeks and is about 1/2 inch taller. He's constantly eating and right now I'm just letting him go gangbusters. It's just so good to see him eating!

The way I got my son on board for the surgery was to tell him about all the good stories from this Forum. There are a lot of them out there, especially with kids. In fact, I can't even recall seeing a bad surgery story in the kids forum??

My only regret is not pushing our former (note I keep saying former!) GI harder on referring us to a surgeon sooner. My son pretty much lost a year of his life because of that stupid stricture.

Best. Decision. Ever!
 
And after all that babbling, I didn't even answer the questions you were asking...

L came out of surgery with an NG tube in place to suck out bile from his stomach. That was in for two days and during that time no food or water was allowed. After the NG tube came out on day two, he was allowed liquids that day. Everything stayed down so the next day he got soft solids... pudding, applesauce. That stayed down so on day three he was allowed regular food. I was blown away. No tube feedings, but there will be an NG tube initially to suck things out.

You may want to have a little discussion on Foley catheters too. An evil necessity.

The post-surgery weight gain has all been from eating normal foods plus one Boost Plus a day for extra calories. GI said Boost wasn't necessary, but L likes to take his Pentasa with it so why not? And the low fiber and low residue is no longer an issue... though I'm still not willing to let him have popcorn contrary to all his begging.
 
Wow Mehita, what an outcome for you and your son, sounds like surgery has a very positive outcome, and what a quick recovery, brilliant weight gain, in fact everything positive. My son has strictuplasty last year, successful at the time, the worse thing for him after surgery was the catheter!! couldnt get it out quick enough, also pain relief he had morphine on a pump, click when needed, however it seemed to make him feel spaced out, but again pain wasnt bad, was back at school in 2 weeks, doing well, then pow gone down quickly, and looks like needs the big op, hopefully without a bag, but whatever it takes to have him bag to his usual cheeky self!

Thankyou for sharing, wonderful outcome for surgery, i will see what the consultant says this morning about my son, appt 9am better hurry along. x
 
My son was admitted through the ER with severe vomiting and had an NG tube put in because of the vomiting. It was determined that he had severe narrowing in his terminal ileum so he was admitted. He didn't eat anything leading up to the surgery, so about 3 days. During the surgery they put in a PICC line for feedings and he had that for, I think, 4 days. Once the PICC line came out he was on a "soft diet," liquids and jello were all he had, for a day and a half. After that he could eat whatever he wanted.

His surgery only lasted just under an hour. I couldn't believe how quick it was. They removed about 4 inches of the terminal ileum and the appendix. He didn't have a Foley afterwards and just had the 1 incision at his belly button, which was closed with glue so no sutures to remove. He didn't get out of bed the day of the surgery, but did very early the next morning and started walking just a little then. On about day 3 he was walking all over the place and spent more time out of his room than he spent in it.

He went home 6 days after surgery, he was riding his bike and skateboard on the 7th day after surgery. I was amazed. He still didn't have great energy, but he would do as much as he could, rest, then go do more. I say it was about 2 weeks after surgery for him to have his energy back plus so much more because he was feeling so good. I don't think we really realized just how bad he was feeling the year leading up to surgery. I think feeling bad became his normal so it was a huge change after surgery.

His surgery was at the very end of summer break, so he didn't miss any school. His surgery was on Aug 9, discharged on the 15th, and started school on the 20th.

We haven't done anything to supplement his calories. He just eats everything! He will sometimes have an Ensure drink just because he likes them.

(Edited to correct the dates. I knew they didn't sound right when I was typing this earlier!!)
 
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If your doctor is saying that he has scarred intestine, all of the medicine in the world won't heal that. Crohn's medicines are good for inflammation but not scarred tissue. I would say to go ahead and get the surgery but pick out the best surgeon in your area.

Hope all goes well.
 
Your stories are amazing! The recouperation time is much shorter than I thought which is great since we are doing the surgery during spring break, which means he won't miss too much school. It will also be helpful to tell my son some of what he might expect, ie foley catheter, eating, etc. Now the day can't come FAST enough! Because I always HAVE to find SOMETHING to worry about,now I'm worried because I have to go away for the weekend to my cousins wedding and my son will be here by himself for the first time. He will spend the night a t a friends house (2nights) though he says he might want to stay at home (I smell a party brewing..hmmm), I'm leaving tons of homemade soft foods for him, but I'm scared he will have an emergency situation or obstruction....oy....I feel like canceling the trip! Well, THAT was completely off the subject....sorry for venting!

Thank you ALL so much for sharing your stories, for your advice and for your support. Bubbly, let us know what they tell you today.
 
Hi, returned from meeting with consultant, slightly shocked, surgery not an option due to inflammation in the colon this time, so wouldnt cure everything. Have been given the choice of steroids (again) or infliximab! Trying to read up on infliximab as havent come across it before, big decission to make, just want whats best for son, went him being a normal 14 year old. The concerns over steroids, is growth, puberty, weight gain and moon face, the last 2 happened when he took them 10 months ago, for approx 14 weeks, he hated the side effects! However he has said he wants the steroids as they are easy to take, fear of the unknown i think!!

The infusions seem to work well what i have managed to read so far, will read some more and make the decision over the weekend.

They have done a chest x ray today and i have signed the consent form so once we say yes to infusions they can go ahead. Need funding approved at apparently very expensive, but here in the uk the trusts pick up the bill not the patient, which is good news, and also told they always get the funding.

So, different route for us this time, will keep you up to date and decissions made, i hope you will keep up up to date with how things go with your son. x
 
infliximab is also known as remicade. Lots of threads on here and there is a whole forum in the treatment section.
 
Hi AWMOM,
Our stories are so similar! My son has terminal ileal resection surgery scheduled for 3/14 at 0600!! He was diagnosed with CD in 2009 at age 6, he will be 10 3/3. He has been through all the meds and EN - he has a g tube and still gets 500-1000 calories per night.
He is allergic to Remicade, and then did 9 months of methotrexate injections, which I believe actually caused the stricture (scar tissue is caused by healing)...as he started getting nausea and vomiting a day or two after his shot last few months. Anyway, Jan 3 he started being too nauseous for school...he started oral prednisone and then was in hospital for IV prednisone for 5 days. His labs indicate he is in remission. He started Humira a month ago, and also l-glutamine as I read that others opened strictures with this.
Today, is the first day, that I actually feel he is improving and MAY NOT NEED the surgery!!
I had resigned myself to thinking it would be so beneficial but every thing I read is that most folks have more issues over the years that follow, they are so young and only have so much small intestine!
Anyway, he may still need the surgery, he is weaning off the oral prednisone and will be done next week...we will have to see how is doing then :)
 
awmom-

My teenage son had surgery this past October. He'd been in the hospital for 2 weeks on TPN when we decided to do it. They removed 45cm of terminal ileum. He was on clear liquids pretty quickly, but could not eat until he had a bowel movement. I think that may have been on post op day 3 or so. He started out slowly but could eat regular food by the time he was discharged. Some things ended up making him feel sick and he just learned the hard way as to what to avoid.

The doc had him on 3 months of Flagyl post-op, but after 2 months he started to get heartburn and some vomiting. They stopped the Flagyl and he was fine the next day!

Best wishes to you--it is hard to see your child go through things like this. Take care of yourself, too!
 
Praying for you and your child! I know how you feel, I went through all those feelings when our only option was to remove my son's colon. We were lucky though that he did not have to have another ilieostomy. But you still wonder about all your decisions and you still worry about their future. My son has felt so much better since surgery though so for him it was worth it.
I hope the best for you and your child.
 
Wow, so many of you have been on similar journeys or are at a point where big decisions need to be taken. Bubbly, I know you were surprised with the recommendation to start Remicade. N started remicade over a year ago and doesn't mind it at all. It's a big gun, but you already tried prednisone and it was a temporary fix, plus it carries all the side effects you mentioned. N's second GI felt that if they had started him on remicade sooner, he might have avoided the stricture. So yes, read up..you will find lots of info on this forum, and the best of luck...keep us posted.

Wow ben's rn, that would be amazing if he didn't need surgery.....how will you know? By all means its a good thing to avoid....they are just SO young and your baby has gone through a lot, and so have YOU. I hope that you are right and he can avoid it.....please let us know. If you do do the surgery on 3/14 we can compare notes!

Habbymomma, and tannersmom, thank you for your support and stories. I'm so glad your kids have done well with their surgerys. I know it must have been so rough on you when you were in the middle of it, so I doubly appreciate your support and it helps to know what to expect. Hope things continue on good track for you and your kids.
 
Hey awmom...:hug:

Both of my children have had ileocaecal resections, also known as right hemicolectomies. They had very different journey's but the outcome was the same, surgery. Following the surgery they have both done wonderfully well, they have grown in both height and weight and it put both of them straight into remission and they have stayed there. So 6.5 years and 22 months respectively. My son was also 17 when he had his surgery. The following is copied from another post. It is an old post hence the differing remission times to what I have stated earlier. They both had open procedures due to complications so if your boy has laparoscopic surgery his recovery time will be quicker:

Sarah:
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.

Matt:
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.
Click to expand...

Also have a read through this article and perhaps show it to your lad, it may help convince that surgery is indeed the right way to go:

• Patients with obstructive symptoms due to a fibrotic terminal ileum are best treated surgically.
Click to expand...

http://www.crohnsforum.com/showthread.php?t=40792

Good luck!

Dusty. :heart:
 
You have gotten fab advice here already...just wanted to pop in to send (((HUGS))) as you and your son face a difficult decision!
 
I'm late to this (as usual for me lately LOL)
However, just want to wish you luck awmom, and others with your decisions !
Gab has had two surgeries, and is possibly facing another; we'll know after tomorrow.
So, I can of course relate to your worries and fears :hug:
 
Like T, awmom, I'm late to the party. First of all, it's never to early for tequila! :)

Second, all this sounds like a plan! My daughter hasn't had to have surgery but in a twist of irony my brother had a resection in January for Diverticulitis. He had lost 25 pounds in two weeks (and didn't have it to lose). He's not a kid so he's less resilient than our children and he bounced back FAST! They weight and energy came back so quickly and he keeps saying "I shouldn't have waited."

We'll be awaiting good news for N (which means good things for mom :ylol2:)

J.
 
Awww...thanks AZMOM.....I was starting to wonder again if I was doing the right thing....you brought me right back to reality and a good place.....thanks.
 
Surgery is scheduled on march 13. He is supposed to see the surgeon on the 12, late afternoon, but now I'm thinking there is something kinda wrong with this scenario. The last time he saw the surgeon was in October when his GI first thought surgery was the way to go, but we haven't talked to him since. I have a bunch of questions (pre surgery prep - seems like it would be too late by THAT time-, if I can stay with him, what kind of anesthesia, time frame, what time to get there.....) so tomorrow I will call and see if we can see the surgeon earlier, or surgery later. Long answer to your question.....anxious as h___!
 
I don't blame you for having those question and they should be answered. Also his nursing staff will be able to answer some of those questions. But still you probably want to meet with him. Hugs
 
Yes, lots of questions for you to ask, and agree a meeting is essential, if possible with surgeon, and nursing staff. When my son had his strictuplasty last year, we met the surgeon, consultant and IBD nurse, have a tour of the ward, spoke in detail about the surgery, and what tubes may be in place when he wakes up, and answered loads of questions. Nurse also went through a day by day plan, eg, when he would be out of bed, eating, etc.

So yes, do ring them and ask to see them.

Good luck and we are all looking forward to hearing great news xx
 
Still facing the surgery decision too...I was told it is 'up to me'! He is technically late for his last dose of humira, as we try and decide about surgery, which is scheduled for 3/14. He is still having nausea, it seems to never really go away with the stricture. I just am so afraid of starting the resection process, he has diffuse small bowel Crohn's - not limited to ilealcecal area. I feel like we will be starting a domino reaction in there. But, he is 10, and it might be best to do this before puberty and he could be in remission for a while? I do appreciate all the information on the topic....but all our crohnies are different...Dusty Cat, was your children's Crohn's limited to the area of the resections? THANKS!
 
I feel your pain ben's rn....what a difficult decision precisely because the inflammation is difuse. Is he well controlled on Humira? where is his stricture? Having constant nausea has to be so difficult for your little boy...and for you!!! I think that if he is having symptoms such as nausea, I would also be more prone to leaning towards surgery, afraid that he might have an actual obstruction. With my son, he has no obstructive symptoms, and actually feels well,but he has not grown in over 2 years and is extremely thin, and he has difficulty eating many foods so cannot really eat away from home much. The GI we went to for a second opinion said he would have done surgery when the stricture was first detected over a year ago especially because it was a critical time for growth. You will get lots of good info here....I find that every time I start getting anxious about my decision I have to read and re-read the posts here and it kind of grounds me and puts things into perspective. Please keep us posted on your decision and on how Ben is doing....sending many warm thoughts.
 
The humira has improved the nausea, but it is still there. He is still out of school. He will be totally off prednisone on Saturday too, so I am wanting to see if that makes a difference. After reading the article that Dusty Cat posted, it made me think again about the timing, he is just 10, and how this could help with starting puberty on time. Ben has had nausea and vomiting for almost 4 years with his flares, so many really sick days and nights, probably all due to this stricture that no amount of med will fix. The Jan. CTE was the first study that he actually kept down the contrast long enough to see the terminal ileum. Even during his surgery just last year, they did not see stricturing. (?)
 
It sounds like you and Ben have been through a lot of rough times for quite a while...hopefully this would bring some relief. Have you had a second opinion? sometimes that helps firming things up in your mind. It's so tough making these decisions!!!

Farmwife and Bubbly, thanks for your posts....I just spoke with the nurse and she said that we can see the surgeon on Tuesday and then reschedule Wednesday's surgery if needed. She did not know what prep would be needed and they usually let you know only a couple of days before the surgery!!! It doesn't sound very organized to me (certainly nothing like what you experienced Bubbly!), but I am sure they know what they are doing. thank goodness for this forum and you guys, from whom we can gather so much information!!!
 
Question for Johnny's Mom - who did your son's surgery??? We see Dr. D in Cincy and Dr. Fal. will do his surgery. 3rd surgery for him by Dr. Fal. (g tube insert, pill cam removal).
I have lots of faith in Cincinnati Children's Hospital Gastro team...they are in top 10 children's hospital always, and always in top 5 for gastroenterology.
 
DustyKat,

Do your children have diffuse small bowel Crohn's or was the inflammation primarily in the places where the resectioning was done?

Still scheduled for surgery 3/14 :(

Thanks!
 
Sorry! Didn't see your question before. :redface:

My daughter was undiagnosed when she had surgery and they resected what could be seen as damaged terminal ileum. She has been in remission since that time so I would have to assume that it was confined to that area only. My son's was confined to the terminal ileum only as well.

My daughter also had major issues with nausea, vomiting and also upper abdominal pain (stomach) plus the extra intestinal manifestation of pancreatitis. These issues resolved with surgery.

I hear you loud and clear with the decision you have to make Mum. You are surely in my thoughts. :hug:

Dusty. xxx
 
We just saw the surgeon. He said "it was reasonable" to do surgery on Nico even tough he does not have any obstructive symptoms, but he said it wasn't absolutely necessary. Said that he was about 75% certain that it would help him with his symptoms so he could eat more variety and more quantity and gain some weight. Nico really wants the surgery in the hopes that he can go out to eat with friends more and have a more normal social life...get.I can't say no to that. Soooooo..the surgery is tomorrow at noon....I go from feeling ok one minute to freaking out a bit the next.
 
Sorry, didn't answer question....his is in the terminal ileum and a little inflammation in his colon.
 
Thinking of you guys and will be sending positive thoughts and prayers your way tomorrow. Hope he gets many many years (actually forever) of symptom free time
 
Sorry I didn't see this earlier.

My son has not had surgery. It was my good friend's son and they live in Grand Rapids Michigan. That is where we just moved from and where my son was diagnosed. She had Dr. Clooney at Helen DeVos.

We see Dr. Saeed at Cincinnati Children's. You are right about the hospital here being rated so highly. I have been impressed with everyone here and would not hesitate to use this hospital for surgery, everything has been excellent as far as care for my son.

Sounds like you are on the right path with the right hospital.

Sorry I couldn't be of more help. Good luck :)
 
Sending lots of hugs and wishes that all goes well tomorrow!!! Hope it brings relief from all his symptoms!

Update when you can! :ghug:
 
Thanks for you thoughts. Nico is getting very nervous/unsure about the surgery and seems kind really down. I'm scared to death but try not to show it. I do hope that this is a game changer for him. Trying to stay positive....you guys have been a great help.
 
Good luck for surgery! It is difficult, but if your son really wants it then it's the right thing to do. 75% is still really good odds.
 
Wishing you both well for today, really hope all goes well, and yes it is a tough decision, and as above, your son really wants it and for all the right reasons. Look forward to hearing how things have gone x
 
Thinking of you guys today. Lots of hugs and prayers. Let us know how he's doing when you get a chance.
 
Thinking of you guys today. Sending lots of support and ((HUGS)) and prayers that all goes well and he has many years of symptom free.
 
Yes thinking of you, let us know how everything goes!! We are still on for Ben's resection surgery tomorrow ...nervous :( Have to get up at 3am to get to Cincy on time!! Hoping this is a disease changing day for him - he so deserves to have relief from this :(
 
ben's rn

Good luck! I hope he gets great results from the surgery!

Lots of :ghug:

Let us know how it goes... :hug:
 
Thanks all.....he's in now.....I'm freaking out one minute, fine the next...just normal for me these days. My biggest fear is that we should have done one more thing before doing surgery, tried something else, given it more time. And I feel bad that we didn't take a week or so after talking to the surgeon to be absolutely sure (if that is possible). On the other hand, we have thought about surgery since October, and both his gi's recommended it. Sometimes though, I don't believe his gi's really heard everything we had to say and they made their decisions in part based on more occasional symptoms, and perhaps his weight.mabe that's enough. I so hope this is a game changer for him...that he can eat out with his friends, that he can gain weight, that he doesn't have to think about this anymore.Sorry for the long ramble.......thanks for all of your well wishes.
Ben'srn, good,good luck tomorrow....please keep us posted throughout.
 
I know EXACTLY what you are going through, and I will be the same way tomorrow AM. You are doing the right thing, it is scar tissue, no med can fix it. He is going to feel SO much better. HUGS and hang in there!! Prayers for you and your son. Keep us posted!!
 
Ramble away if it gets you through this time. If we're good at anything, we good at wasting time talking about....nothing.:dance:
 
Breathe, awmom!! He's in good hands!!

My son had his Remicade appointment last week, 7 months after his surgery. He was up 25 pounds since surgery! Now weighs 100 pounds. He eats everything (well, no popcorn, nuts, things like that). He even commented a couple of nights ago that his tummy doesn't hurt anymore. Hoping and praying your son has the same outcome!
 
Thanks guys.....you made me laugh Farmwife. Tink572.....I think you sons improvement is remarkable and you give me so much hope....i DO have to remember to breathe! Ben'srn......I will be thinking of you. I wish you were at the same hospital as us. Please keep us updated.
 
Prayers for you and your son. I don't think it is possible to have any clear cut answers with this disease. When there feeling ok and you live with it so long you forget how good they can feel when they are well.

(((((Hugs)))))) and hang in there mom!
 
Just want to add that my son, aged 21 who has has suffered with Crohns since around 11 yrs old, has a bowel resection on 21st Jan (his 21st birthday :( ). He had had increasingly painful stomach, passing lots of blood, loosing loads of weight and missing important time of his apprenticeship job and was really worried there was more to his symptoms.
Anyway, he had the surgery and it has been the very best thing for him. Painfree pretty much, put on a stone in weight and looking and feeling so much better.
Hopefully this will be the end of a long road
Best of luck to you all in a similar position.
Stuarts mum
 
I hope all has gone well awmom...:ghug:

You are not alone in your guessing Mum...:hug:...even when the decision has been taken out of your hands it doesn't stop the questioning so please know that you not alone. It often is not clear to us how we find ourselves at a certain place in this journey called Crohn's as it more often than not is a nightmarish blur but we get there for a reason and that reason is that no decision you make for your child is ever done flippantly. Every decision is borne out of love and no decision made on that basis is ever wrong. :)

Thinking of you and your boy and wishing you all the luck in the world!

Dusty. :heart:
 
Thanks for you support, stories and words of wisdom. Today is the first day post op. yesterday was a little rough....but the surgery went well."I think they removed 12cms. They took the cath out before he woke up, which was a problem because then he had to keep getting up to pee (no down time for him!) No NG tubes, only IV's. Today they have him walking the floors and eating ice chips. So.....now time will tell, and I'm still a little heavy hearted and have to keep reminding myself that this needed to be done to give him the best chance to continue his development (if we are not too late), and to give him a chance at normalcy in his everyday life. And you are right Dusty, that these decisions are never arrived at easily or taken lightly....thanks for the reminder.

Bens'rn....how did it go for you and your son today? I'm sure you have your hands full at the moment but I was thinking of you and wondering. Sending you only the warmest thoughts for you and your son...please let us know whats up!
 
Hope things went well. I know surgery is tough, but hopefully he will recover quickly. Kids often surprise us with how well they do with these things. Keep us posted sending healing thoughts!
 
I am not a kid but I just had my first surgery ever. It was a major deal for my husband and I. We talked and researched and spoke to 2 different surgeons as well as my GI. It took me 6 months to decide it was the right thing to do. If you and your son do not feel comfortable then I say see another surgeon for second/third opinion.Good luck in what you decide and hope for the best.
 
Sorry my comp. Only showed up to the post on the fourth. I hope for the best in all his healing.
 
awmom - glad to hear Nico's already up and walking! Hope all went well and that he begins to recover as quickly as possible!

Ben's rn - thinking of you! Hope all went well! :ghug:
 
Thinking of both of you with your boys. I hope all went well for Ben and wish speedy healing for both the boys and Shalin.
 
Update on Ben: it is a bit weird, I am still confused, as the CTE showed terminal illeal stricture so the plan was to resection there. At our immediate post-op conference with the surgeon yesterday, it was explained that 22 cm in the jejenum part of small bowel was resected instead...? Not sure still but he said there were several strictures there and outpouching where food was getting trapped, hopefully that explains all the nausea. No ostomy and at least there is lots of jejunum remaining. He is on a PCA pump and has continuous pain med running. Foley catheter, g-tube is draining to gravity. 2 IVs. He feels better already he says...but of course has not been out of bed yet! Hopefully all is well with awmom and the post-op days will soon be behind us!!
 
Just spoke with the surgical NP and she said it was actually 55 cm out of jejunum!! Now I feel woozy :( Guess the surgeon meant 22 INCHES when he said cms.
 
awmom - how is Nico doing today? thanks for all the words of support, wish we were in the same hospital too!!:ghug:
 
Ben's rn - glad he's feeling better already! :thumright: Kids' recovery abilities are amazing!

Sorry the amount removed was a bit of a surprise to you but, at least, all the damaged area has been removed! :( I'm sure you'll get more clarity re the TI vs jejenum once you have a chance to speak with the surgeon/GI. As great as scans/images are, it seems the 'picture' they offer is not always 100% accurate or complete.

But, just so glad it's behind you and he's feeling as good as can be expected! :)
 
Thanks for all the healing thoughts. Nico has had it a bit rough with headaches and nausea. I think part of it is that he hasn't eaten since Sunday!! Is starting clear liquids today if he can tolerate them.

Ben'srn, I am so thrilled that Ben is feeling well.....that is amazing! That is really something about his surgery, and I can imagine you we're a bit shocked. It sounds like they were very thorough in their inspection of the troubled area though and this will hopefully bring him lots of relief for many,many years to come. I hope he continues to recuperate so nicely!
Keep us updated.
 
Awmom and ben's rn, glad the surgeries went well and hope they are both up soon and acting and feeling like healthy, happy children and are symptom free forever!
 
So happy to hear both kids are doing well post-op. We are two months post-op here and every day I just stare at my son in amazement at how much his life has changed for the better. No more nausea, no more vomiting, not even a tummy ache yet. I truly hope you get to experience the same!
 
I'm glad he is out now and doing well. I would be confused and a little upset at that kind of change, but I'm sure the decision wasn't changed lightly as to where and how much to take out. I am wishing for complete recovery for both of the boys now...
 
Thanks all. He's doing better this afternoon so started on some clear liquids. He looks thinner, but hope he will start eating and gaining weight soon. If he can't eat soon they will start TPN. Still find myself questioning our decision to go with surgery (heave-hearted sigh)...I hope he thrives as so many kids have. Good night to all.
 
Glad the operation is done and he is on the road to recovery. I believe the first couple days are the worst, but I'm sure once he is eating a little, things will start to feel more normal. Hope the transition to food goes well and he feels better and better.
 
Hey Mum's...:ghug:

So fab to hear your boys are doing well, bless them...:heart:

@ben's m - I know a little of how you feel. Sarah went into surgery undiagnosed and for an appendectomy came out with a diagnosis and 68cm less bowel. She has never looked back and has only gone from strength to strength. It is true too that the surgeon never really knows what he/she will be presented with until they actually get in there. Even Matt, with all the tests and imaging possible had more complications than were realised but again he is doing fab! :)

:hang: Mum's! You are both doing great and so are your boys!

Onwards and Upwards!
Dusty. xxx
 
On the mend! Feeling much better today and tolerating some clear liquids. Looks like he Has lost a lot of weight.....hasn't eaten since last Sunday! Hopefully they will discharge him soon an I can fatten him up a bit I will probably take it slowly and supplement with a lot of peptamen.

Ben'srn, how's Ben doing?
 
Hi All, Glad to hear Nico is starting clears and tolerating. Ben started a tiny bit of clears yesterday and then jumped to regular today...guess his bowel sounds are really active, and he is passing gas too.

He is starting to get out of bed more quickly, and without help. He ate some eggs this morning and some chicken for lunch! He says because the nausea is gone now, he just feels so much better....I am feeling really good about the decision now :)

Thanks everyone for the much needed support from the only people who know what it is like living the Crohn's roller coaster! :ghug:
 
So glad to hear both boys are doing so good!! Kids are amazing with how quick they heal and are ready to move on. Hope they both continue doing better and better!
 
Glad Nico is feeling better and Bend en Vlad your son is doing better a well.surgery is scary but it sounds like you both made the right choice.hopefully they will have many years of health after this!
 
Well, while nico is feeling much better, he has no appetite and ate maybe 20% of what was on his tray. He is weighing 87 pounds now and it's kinda scary that he is not eating much......the hospital food leaves a lot to be desired so I know that is part of the problem, and I can't bring him restaurant food cause he hasn't eaten that for a couple of years and doesn't think it will sit well. So I got some progreso chicken and rice soup will I will try to give him Ina while. His diet has been so limited for so long (no dairy,no fruit,no gluten) and it will take some time for me to reintroduce these foods I guess. I am hoping the doc will order some peptamin for him to have between "meals".

What have your kids eaten right after their surgeries? Did they have an appetite? How long before they started to gain weight (if needed?). Any advice is really appreciated!!
 
After his surgery, once all the big pain meds cleared his system, L was hungry all the time. So much so that he would overindulge and threw up once. I think there is some mental anxiety as well though. Food has been a trigger to feeling miserable for some of these kids, so it might take some time to get over that.

I don't know if I'd be too concerned this early on. See how things go at home for a week or so.

I'm so glad the boys are doing well. Just take one day at a time.
 
Yup, got the peptamen, and am glad they gave us some to take with us....came in handy. On our drive home from Houston yesterday, the car broke down in the middle of nowhere and it was several hours before we were able to get a tow truck to drive us home (1+ hours). Nico had to hold a pillow to his stomach as the tow truck bounced along the highway!!! Anyways, at least he had a little something to eat!!

His appetite hasn't kicked in, but I know I have to be patient....like you said Mehita, one day at a time.
 
Hi All,

I have my First surgery scheduled for today.. I am affraid and praying it would relieve me of my systoms for at least a good periods of years...

Any advice on the aftermath? What should I do, or not do?
How long is the recovery process?

Wish me luck guys..
:ybatty:
 
Hi Zahid, sorry you are having to have surgery, but like you said, the hope is that you will befell much better for many years to come. My son did quite well with the surgery las wednesday. The first two days he had some pain but it was well controlled with meds. Each day he was a bit better, and by the third day after surgery he was wanting to come home. Discharged 5 days after surgery. One problem he had was that they did NOT leave the catheter in after the surgery. This meant that he had to get up several times almost immediately after the surgery and it was really difficult. From all the posts I've read the always left the cath in at leas 24 hours so I never thought to ask. It is almost a week and he is eating regular (soft) foods and hardly no pain, but is a little tired toward the end of the day. The only limitation the gave him was on lifting.

I wish you the best of luck with your surgery and many years of remission. Let us know how it goes.
 
Good luck, Zahid! My son was also discharged after 5 days. The first couple of days are a little rough as with any surgery, but by day 3 he was ready to move on and start enjoying life. He was off all pain meds by day 10.

My only advice would be to walk a lot after to help the healing process and to go slow with food. Just because they tell you that you can eat anything doesn't mean your body will be able to handle it. Slow and steady and each day will get a little easier and better.

Let us know how it goes!
 
I have missed a lot!!!

So glad both surgeries went well.

awmom, maybe the lack of appetite is just from the pain meds?? I know I have zero appetite when I take any pain medication. Hopefully he will let you fatten him up soon!!!

Zahid- good luck with surgery and let us know how you are doing. (((((hugs)))))
 
Appetite is improving and now off pain meds! Thanks to ALL OF YOU for being there throoug this time and always, through thick and thin.
 
Hey awmom,

My two were very underweight post surgery. Their appetite was alright by the time they were discharged but it did take some time for them to tolerate decent sized meals. For us small frequent meals was the key. :)

I hope the boys are continuing to go from strength to strength! :):):)

Dusty. :heart:
 
Awmom, I just now came across this thread, and I wish I had found it sooner. We are essentially next door neighbors given the global scope of this forum, and I was in the medical center in Houston with my daughter while you were there with your son. Did he have his surgery in the medical center? Wouldn't it be so crazy if we had been in the same hospital at the same time? I haven't seen anywhere if you mentioned the age of your son. Is he a teen?

Anyway, I wanted to just say hi and thanks for posting the story about Nico. My daughter is 10, and I had a conversation with her GI this morning on the phone for an hour that leads me to think that surgery is going to be happening, and sooner than I ever thought.

I look forward to reading more about how your son is progressing. I just told my daughter about him, and she actually said she would be okay considering surgery after hearing it. Otherwise, I know her, and she would have absolutely refused. Not that she gets the final say, but she would have refused.

Can I say, Hook Em! and keep us posted.

Stacey
 

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