Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Surgery scheduled.....doing the right thing?


 
02-27-2013, 10:49 AM   #1
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
Surgery scheduled.....doing the right thing?

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?)
02-27-2013, 11:42 AM   #2
araceli
Forum Monitor
 
Join Date: Nov 2012
Location: El paso, Texas

My Support Groups:
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.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
02-27-2013, 11:50 AM   #3
Jmrogers4
Moderator
 
Jmrogers4's Avatar
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.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-27-2013, 12:05 PM   #4
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
^^^ ditto to above. It's so hard to make these decisions! 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.

Hugs...
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-27-2013, 12:57 PM   #5
Tink572
Senior Member
 
Tink572's Avatar
 
Join Date: Mar 2012
Location: Alabama
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!

02-27-2013, 02:38 PM   #6
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
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.
02-27-2013, 02:52 PM   #7
Bubbly
Senior Member
 
Bubbly's Avatar
 
Join Date: Oct 2011
Location: Cambridge, United Kingdom
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
02-27-2013, 04:33 PM   #8
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
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.
02-27-2013, 06:00 PM   #9
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
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.

Let us know how he is getting along. (((hugs)))
__________________
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
02-27-2013, 11:45 PM   #10
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
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.
02-28-2013, 12:24 AM   #11
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
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!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
02-28-2013, 12:36 AM   #12
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
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.
02-28-2013, 02:36 AM   #13
Bubbly
Senior Member
 
Bubbly's Avatar
 
Join Date: Oct 2011
Location: Cambridge, United Kingdom
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
02-28-2013, 07:22 AM   #14
Tink572
Senior Member
 
Tink572's Avatar
 
Join Date: Mar 2012
Location: Alabama
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!!)

Last edited by Tink572; 02-28-2013 at 08:13 AM.
02-28-2013, 07:45 AM   #15
kh216
Forum Monitor
 
Join Date: Jul 2012
Location: Barrington, New Jersey

My Support Groups:
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.
02-28-2013, 10:25 AM   #16
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
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.
02-28-2013, 10:33 AM   #17
Bubbly
Senior Member
 
Bubbly's Avatar
 
Join Date: Oct 2011
Location: Cambridge, United Kingdom
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
02-28-2013, 11:31 AM   #18
Jmrogers4
Moderator
 
Jmrogers4's Avatar
infliximab is also known as remicade. Lots of threads on here and there is a whole forum in the treatment section.
02-28-2013, 11:56 AM   #19
ben's rn
 
ben's rn's Avatar
 
Join Date: Sep 2011
Location: Columbus, Ohio

My Support Groups:
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
02-28-2013, 12:03 PM   #20
habbymomma
 
Join Date: Oct 2012
Location: United States-Ohio

My Support Groups:
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!
02-28-2013, 02:40 PM   #21
tannersmom
 
Join Date: Sep 2010
Location: prestonsburg, Kentucky
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.
02-28-2013, 10:15 PM   #22
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
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.
03-01-2013, 03:51 PM   #23
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Hey awmom...

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

Good luck!

Dusty.
__________________
Mum of 2 kids with Crohn's.
03-01-2013, 04:23 PM   #24
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
You have gotten fab advice here already...just wanted to pop in to send (((HUGS))) as you and your son face a difficult decision!
__________________
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
03-02-2013, 10:04 AM   #25
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-03-2013, 02:03 AM   #26
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
Thanks guys....you are the best!
03-03-2013, 08:05 AM   #27
AZMOM
Moderator
 
AZMOM's Avatar
 
Join Date: Nov 2010

My Support Groups:
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 )

J.
__________________
Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-03-2013, 10:13 PM   #28
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
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.
03-03-2013, 10:24 PM   #29
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
When is surgery scheduled?
03-04-2013, 08:07 PM   #30
awmom
Senior Member
 
Join Date: Sep 2012
Location: College Station, Texas
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___!
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Surgery scheduled.....doing the right thing?
Thread Tools


All times are GMT -5. The time now is 12:11 PM.
Copyright 2006-2017 Crohnsforum.com