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08-23-2013, 09:22 PM   #1
DustyKat
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Location: New South Wales, Australia
Surgery Club

This is a place to provide information for other parents about you and your child's experiences with surgery.

It is also an area to ask questions and please bear in mind that there is no such thing as a dumb question. If you haven't found an answer to what you are seeking then there is every likelihood that it has never been asked and therefore you won't be alone in wanting to know, so ask away!

This is a list of questions for those parent's that have travelled the surgery path and hopefully by answering them newbies to the treatment will have many, if not all, of their questions answered.

1. Why did your child require surgery?

2. When did your child have surgery?

3. Does your child have Crohn's disease or Ulcerative Colitis?

4. If CD where is it located?

5. Prior to surgery at what level of activity was the disease rated: mild, moderate or severe?

6. What surgery did your child have?

7. Was it laparoscopic or open surgery?

8. If open what type of skin closure was used?

9. How long did the surgery take?

10. Did the surgeon find anything unexpected whilst performing the surgery?

11. Did your child require a stoma? Were you expecting this?

12. If yes was it temporary or permanent?

13. Immediately following recovery did your child go to ICU or back to the ward?

14. If they went to ICU how long were they there for?

15. What IV's, drains and/or other catheter/tubes were in place post operatively?

16. How was their pain management delivered and was the regime effective?

17. Were there any post operative complications or set backs?

18. When did they first get out of bed and walk?

19. When were oral fluids recommenced?

20. When did they have their first bowel motion?

21. How long was your child in hospital for?

22. Did your child require any ongoing nursing treatment when they were discharged e.g. wound/drain dressings etc?

23. Did they have a scar and was it bothersome to them?

24. How long after discharge did they recommence normal activities such as attending school and competing in sports?

25. How long after discharge did they have their post op consult with the surgeon.

26. Did the surgery put your child into remission?

27. Was your child commenced on maintenance medication or did their medication not change from what it was pre op?

28. If medication was commenced or changed how long after surgery did this happen and why?

29. Any other tips or information?

Thank you to those that are able to contribute to gathering of this information and if you think of any other questions that would be useful please let me know and I will add them.

For those wishing additional information please have a look at the Surgery Story thread located here in the Surgery Forum and the Questions for your Surgeon thread located here, also in the Surgery Forum.

Thanks.
Dusty
__________________
Mum of 2 kids with Crohn's.

Last edited by DustyKat; 08-25-2013 at 01:31 AM.
08-23-2013, 10:35 PM   #2
DustyKat
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Location: New South Wales, Australia
These answers are in relation to Sarah:

1. Why did your child require surgery?
Sarah was undiagnosed and had been admitted the night before with severe abdo pain and vomiting. The next morning bloods showed she was septic so she was taken to theatre for an emergency laparotomy and appendectomy.

2. When did your child have surgery?
July 10th 2006.

3. Does your child have Crohn's disease or Ulcerative Colitis?
Crohn's disease.

4. If CD where is it located?
Ileum only.

5. Prior to surgery at what level of activity was the disease rated: mild, moderate or severe?
Was undiagnosed.

6. What surgery did your child have?
Went in for an exploratory and appendectomy and came out with a right hemicolectomy. 59cm of ileum and 9cm of caecum resected.

7. Was it laparoscopic or open surgery?
Open, due to it being an emergency.

8. If open what type of skin closure was used?
Continuous dissolvable suture.

9. How long did the surgery take?
4 hours.

10. Did the surgeon find anything unexpected whilst performing the surgery?
Yes. Although they didn't know what to expect they thought they were just going in to take her appendix and have a look around for the cause of her pain and sepsis. When they got in there they found pus throughout her abdominal cavity and a ruptured and infarcted bowel.

11. Did your child require a stoma? Were you expecting this?
No stoma.

12. If yes was it temporary or permanent?
N/A

13. Immediately following recovery did your child go to ICU or back to the ward?
ICU.

14. If they went to ICU how long were they there for?
Spent 24 hours in ICU. The surgeon was looking at 2 days but Sarah really wanted out of there.

15. What IV's, drains and/or other catheter/tubes were in place post operatively?
Two IV's, nasogastric tube, oxygen, two wound drains and a urinary catheter.

16. How was their pain management delivered and was the regime effective?
Via a PCA (Patient Controlled Analgesia). It was effective.

17. Were there any post operative complications or set backs?
No, all went smoothly.

18. When did they first get out of bed and walk?
Day 2 post op.

19. When were oral fluids recommenced?
Day 3 ice chips and day 4 clear fluids.

20. When did they have their first bowel motion?
Day 4.

21. How long was your child in hospital for?
6 Days.

22. Did your child require any ongoing nursing treatment when they were discharged e.g. wound/drain dressings etc?
No.

23. Did they have a scar and was it bothersome to them?
Sarah has a horizontal scar, much like a caesarian scar. It never bothered her and she did not want to use any products to help heal or fade it, like Bio Oil. Seven years on it is a barely noticeable thin silver line.

24. How long after discharge did they recommence normal activities such as attending school and competing in sports?
Sarah returned to school after 3 weeks. She did not play any sports at that time. She was in very poor condition leading into surgery and I feel that she reached about 80% after a few weeks but her full recovery took about 5/6 months.

25. How long after discharge did they have their post op consult with the surgeon.
3 weeks.

26. Did the surgery put your child into remission?
Yes and she has remained there.

27. Was your child commenced on maintenance medication or did their medication not change from what it was pre op?
She commenced on Imuran about 2 weeks post op.

28. If medication was commenced or changed how long after surgery did this happen and why?
She was undiagnosed at the time of her surgery and had not been seen by a GI. The GP rang the GI two weeks post op and it was prescribed over the phone.

29. Any other tips or information?
If surgery is looming or you are being asked to consider it I know it is a huge step, the consequences of which you can't take back, but don't ever linger so long that the option of planned surgery is taken out of your hands.

Dusty.

Last edited by DustyKat; 08-24-2013 at 02:34 AM.
08-23-2013, 11:14 PM   #3
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
These answers are in relation to Matt:

1. Why did your child require surgery?
He had the complication of a fistula in the terminal ileum that connected to an abscess on the psoas muscle. He had a pigtail drain in for 3 months in the lead up to this surgery and they waited this long to do the surgery as they were waiting for the inflammation to go from acute to chronic.

2. When did your child have surgery?
April 7th 2011.

3. Does your child have Crohn's disease or Ulcerative Colitis?
Crohn's disease.

4. If CD where is it located?
Ileum only.

5. Prior to surgery at what level of activity was the disease rated: mild, moderate or severe?
On diagnosis it was very mild and that very quickly deteriorated to severe with the advent of the complications.

6. What surgery did your child have?
Right hemicolectomy. 20cm of ileum and 8cm of caecum resected.

7. Was it laparoscopic or open surgery?
The surgeon said from the outset that due to the complications he didn't think he would be able to do laparoscopic. He did try but had to resort to open.

8. If open what type of skin closure was used?
Continuous dissolvable suture.

9. How long did the surgery take?
4 hours.

10. Did the surgeon find anything unexpected whilst performing the surgery?
Yes. They found another fistula and a phlegmon (type of abscess/inflammatory mass) attached to his abdominal wall. It was actually the phlegmon they were seeing on scans 3 months earlier and not extensive inflammation throughout the small bowel as they thought.

11. Did your child require a stoma? Were you expecting this?
No, but it was discussed as a very real possibility if they had to operate sooner than they wanted.

12. If yes was it temporary or permanent?
N/A

13. Immediately following recovery did your child go to ICU or back to the ward?
To the ward.

14. If they went to ICU how long were they there for?
N/A

15. What IV's, drains and/or other catheter/tubes were in place post operatively?
One IV, oxygen, one wound drain and a urinary catheter.

16. How was their pain management delivered and was the regime effective?
Via a PCA and it was effective.

17. Were there any post operative complications or set backs?
No.

18. When did they first get out of bed and walk?
Day one post op.

19. When were oral fluids recommenced?
Day 2 commenced clear fluids.

20. When did they have their first bowel motion?
Day 5.

21. How long was your child in hospital for?
Discharged Day 9.

22. Did your child require any ongoing nursing treatment when they were discharged e.g. wound/drain dressings etc?
No.

23. Did they have a scar and was it bothersome to them?
He has a vertical scar that has not bothered him. It has is still a little noticeable and is now a pale pink colour. Hair is now starting to cover it.

24. How long after discharge did they recommence normal activities such as attending school and competing in sports?
Went back to school 3 weeks post op. Driving long distances at 5 weeks. Commenced soccer training at 5 weeks. Matt's recovery was much quicker than Sarah's and I would say the 4 week mark post op was the real turn around for him. It was at this stage that he started to move freely again and shades of his old self started to appear.

25. How long after discharge did they have their post op consult with the surgeon.
6 weeks.

26. Did the surgery put your child into remission?
Yes, and he has stayed that way.

27. Was your child commenced on maintenance medication or did their medication not change from what it was pre op?
Medication (Imuran) remained unchanged from his pre op dose. He was also on Flagyl for 3 months pre op and that remained for 3 months post op at half the dose as the Crohn's specialist was of the opinion that it helps establish and maintain a longer remission period.

28. If medication was commenced or changed how long after surgery did this happen and why?
N/A

29. Any other tips or information?
There are some good threads on here about what to take to hospital. Put the underlined words into the search and it will pull up the old threads.

Dusty.

Last edited by DustyKat; 08-24-2013 at 02:35 AM.
08-27-2013, 10:23 PM   #4
Mehita
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Location: Minnesota

My Support Groups:
1. Why did your child require surgery?
-He had a 13cm stricture due to built up scar tissue in his small intestine. The diameter of the strictured area was only 3mm!

2. When did your child have surgery?
-January, 2013

3. Does your child have Crohn's disease or Ulcerative Colitis?
-Crohn's Disease

4. If CD where is it located?
-Stomach, small and large colon

5. Prior to surgery at what level of activity was the disease rated: mild, moderate or severe?
-Mild

6. What surgery did your child have?
-Small bowel resection

7. Was it laparoscopic or open surgery?
-Open

8. If open what type of skin closure was used?
-Super glue

9. How long did the surgery take?
- 4 hours

10. Did the surgeon find anything unexpected whilst performing the surgery?
-No

11. Did your child require a stoma? Were you expecting this?
-No stoma

12. If yes was it temporary or permanent?

13. Immediately following recovery did your child go to ICU or back to the ward?
-Recovery, then ward.

14. If they went to ICU how long were they there for?

15. What IV's, drains and/or other catheter/tubes were in place post operatively?
- NG tube, Foley catheter, epidural in back, IV in arm

16. How was their pain management delivered and was the regime effective?
- via epidural. Overall it was great pain management for his stomach, but he suffered from pain elsewhere not covered by the epidural like his throat (from intubation), referral shoulder pain, etc. He ended up on both narcotics and the epidural.

17. Were there any post operative complications or set backs?
- just related to the epidural. Not sure we'd go that route again.

18. When did they first get out of bed and walk?
-two days post-op

19. When were oral fluids recommenced?
-three days post-op

20. When did they have their first bowel motion?
- not sure... 5 days post-op?

21. How long was your child in hospital for?
- 6 days

22. Did your child require any ongoing nursing treatment when they were discharged e.g. wound/drain dressings etc?
- the super glue on the incision pulled apart and we had to dress that several times a day. This continued at school as well and lasted about three weeks.

23. Did they have a scar and was it bothersome to them?
-Originally the scar was about 3 inches long. It has since shrunk to about 2 inches. It doesn't bother him at all.

24. How long after discharge did they recommence normal activities such as attending school and competing in sports?
- 11 days post-op for school, 6 weeks post-op for sports

25. How long after discharge did they have their post op consult with the surgeon.
- 4 weeks

26. Did the surgery put your child into remission?
- Very briefly.

27. Was your child commenced on maintenance medication or did their medication not change from what it was pre op?
- He stayed on Pentasa.

28. If medication was commenced or changed how long after surgery did this happen and why?
-About 2 1/2 months after surgery, he flared (completely different symptoms and area) and was put on Azathioprine.

29. Any other tips or information?
-Be sure that your GI and the surgeon actually talk to one another! There was much controversy on whether my son needed this surgery. We finally requested a group meeting with surgery, gastro, and radiology. As a group they poured over his MRE and finally came to a consensus that he needed this surgery to get his life back. We have no regrets and even though he was only 12 at the time, feel that this was a good decision.
__________________
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
08-31-2013, 11:44 AM   #5
QueenGothel
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Join Date: Oct 2011
Location: Michigan, USA
1. Why did your child require surgery? Refractory to Steroids/ Pancolitis

2. When did your child have surgery? April 2012, June 2012 X2, Dec 2012, Aug 2013

3. Does your child have Crohn's disease or Ulcerative Colitis? UC

4. If CD where is it located?

5. Prior to surgery at what level of activity was the disease rated: mild, moderate or severe? Severe

6. What surgery did your child have? Proctocolectomy w/ Ileal Anal Pull through, mucosectomy and ileostomy, 4 Ex-Laps one for take down, one for hernia, one for blockage and omentumectomy, and one unknown possibly failed J-Pouch w/ ileostomy

7. Was it laparoscopic or open surgery? Both

8. If open what type of skin closure was used? Dissolvable sutures, wound vac, dissolvable sutures and surgical glue twice.

9. How long did the surgery take? 6 hours, 4 hours, 2 hours, 3 hours, 3 hours.

10. Did the surgeon find anything unexpected whilst performing the surgery? Omentum strangling the entire small intestines like a spider. The last one the failed pouch is of unknown reasons. Still waiting to test the pouch to diagnose.

With every ex-lap her reproductive organs were being strangled by adhesions.

11. Did your child require a stoma? Were you expecting this? The first one yes. The second one they told us it was more than likely she would have one.

12. If yes was it temporary or permanent? Both temporary

13. Immediately following recovery did your child go to ICU or back to the ward? Back to ward for all 5 surgeries.

14. If they went to ICU how long were they there for? N/A

15. What IV's, drains and/or other catheter/tubes were in place post operatively? Penrose rectal drain, epidrual catheter, foley catheter, NG tubes for suction, PICC lines for most last one was just an IV.

16. How was their pain management delivered and was the regime effective? Epidural worked great after two days removed epidural always controlled with IV a Tylenol and IV Tordol PRN. Once had a PCA hated it the morphine gave her a terrible Ileus.

17. Were there any post operative complications or set backs? The second surgery was not scheduled and she had steroids in the OR this impeded her healing and the ex-Lap needed to be opened again for drainage. She came close to herniating, so went back into OR to repair and have wound vac placed.

18. When did they first get out of bed and walk? 1st surgery she was walking the next morning, her pain might have been a little too well managed. 2nd she didn't walk for days because of the hernia and the fear of intestines spilling out onto the floor. All others were in chair on day 2 and walking by day 3. She would never walk beyond that first surgery with a catheder in.

19. When were oral fluids recommenced? After gas was passed and or BM occurred, usually 48 hours later.

20. When did they have their first bowel motion? 48 hours for most the second surgery she got an ileus from too much morphine it was 4 days.

21. How long was your child in hospital for? 6 days, 28 days, 5 days, 5 day.

22. Did your child require any ongoing nursing treatment when they were discharged e.g. wound/drain dressings etc? Yes wound vac changes were every 3 days for 2 weeks with a home care nurse.

23. Did they have a scar and was it bothersome to them? Yes they always have went in the same scar with each new surgery. It was not bothersome beyond that second surgery with the wound vac.

24. How long after discharge did they recommence normal activities such as attending school and competing in sports? 2 weeks or later when she felt like she could do it. School ASAP. Sports not recommended.

25. How long after discharge did they have their post op consult with the surgeon. 2 weeks each time.

26. Did the surgery put your child into remission? Yes

27. Was your child commenced on maintenance medication or did their medication not change from what it was pre op? Med free ever since beyond some antibiotic use.

28. If medication was commenced or changed how long after surgery did this happen and why?

29. Any other tips or information? Make sure if your kid ever has j-pouch surgery that you have a skilled surgeon that does J-pouches all the time. Many doctor should not even be doing this surgery according to Cincy Colorectal Center. Travel if needed, not worth the pain and suffering if it is not right. My DDs hospital does these all the time and are endorsed by the Cincy Colorectal Center and they had a heck of a time troubleshooting my DD so a lot can go wrong. Be selective! Get the mucosectomy, otherwise expect UC symptoms afterwards.
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