Photos 3: Jpouch
J-pouch “Takedown” Surgery or Mark’s Step 2 surgery
Medicial/Accurate: Surgery explained with text and images
*Time between surgery 1 “total colectomy”and surgery J-pouch “Takedown” Surgery 2 “takedown” was 3 months. Mark could have had the surgery done at 8 weeks but needed an extra 4 weeks to fit his work schedule.
**I tell my story in these photos, the comments were all documented both photos and most the journaling by Megan (my partner of 14 years) during the time because we wanted to capture what was happening and feeling and experiencing at that moment.
Photo 1: X-ray prep and night before takedown
Five days before the scheduled takedownsurgery, he went to have a barium x-ray done of his pouch to make sure there were no leakages. This process was easy, but make sure you STRESS to the x-ray technicians that you have NO COLON and that they must use smaller tubes than they would withothers. Please be very clear about this, that they can not use standard tubes, it isn’t as common for them to do this procedure on people with no colon, so don’t assume they understand. You may have some barium fluid coming out your stoma, and you might be prepared for some barium fluid leakage from your anus on the car ride home.
This is Mark in the hotel the night before the ‘takedown’ surgery. Yesterday Mark started another stoma blockage, this was a full blockage that last 24 hours (Sat into Sunday). After having 3 blockages, he began to think it was maybe scar tissue and not just food like we had initially thought. This blockage left him vomitting and in pain, but luckily he was still able to have the takedown surgery on Monday morning.
Photo 2: Prep for takedown & Supplies Brought
It was really nice that everything was familiar for this surgery. Meaning the rooms were the same, and we dealt overall with the same people. It made it much easier going into this surgery knowing the procedure basically.
What to bring for your takedown:
1. Super soft toilet paper. For a 4 day stay Mark used 1.5 roles.
2. A variety of your preferred creams for skin and/or hemorrhoid (skin tags) treatment. Mark’s favorite cream is Cortizone, Nupercanal and Tucks cream. Other people have mentioned they prefer A & D, Calmoseptine. Just find what creams works best for you.
3. Mark had a spray bottle but didn’t use it b/c his movements went from liquid on day 2 to mashed potato like once he began eating solid foods.
4. Other people have mentioned bringing their preferred garments for leakage. Mark didn’t have any leakage, but you might want to bring some.
Photo 3: Goodbye Stoma
Here we said goodbye to the stoma. He was a good stoma, that did his job really well and was good to Mark. If for some reason Mark would need to go back to temp or end ileostomy we know now that it would be okay.
We saw having this temp stoma inbetween surgeries as a blessing. If this is ‘worst case scenario’ if the jpouch doesn’t work, then we don’t have anything worry about. Life with stoma is a MILLION times better than life with UC.
Photo 4: Takedown day 2, Bandage
Here you can see he is standing in the morning of day 2. He just had the foley cathedar removed (only had the cathedar for 15 hours). He was able to urinate on his own fairly quickly and since this procedure isn’t consider to have trauma near the bladder like the first step, he didn’t need to keep the catheder in long. They put it in for surgery and then the night of surgery to make sure he was urinating enough.
Most exciting, was that 15 hours after surgery, he felt some pressure on his anus and he had his first bowel movement. We listened to the others on the jpouch site and brought him soft soft toliet paper, wipes, and spray bottle, and multiple types of butt care creams (Calmoseptine, A & D).
Since his first BM, he has gone 3 times in 8 hours. He has continence control.
Just this morning was he allowed to start sipping water, no food yet. The doctors want to make sure his bowels are fully awake before they start putting food into him. He is very hungry right now, and he just saw a commercial for pizza and he said, “yumm, pizza”….He is feeling pretty darn good.
Yes, he is swollen in both the pictures here on Day 2 his “surgery” alergy came back. He had some reaction apparently during the 1st in the operating room. Then on the 2nd surgery we thought we knew what he was allergic to, but obviously not. He was all swollen and itchy, and his hand that had the IV was really swollen. He was on benedryl which helped him sleep in the hospital.
Photo 5: Takedownday 2, bath
Just to give you a frame of reference here he is about 24 hours after surgery, and he is up and has the engeryto take a sink bath. I’m sure you are sensing that the physical recovery of this surgery is a lot less than step 1.
Photo 6: Takedown day 2, Walking
Walk, walk, walk and get those fluids moving.
Photo 7: Up-Close staple suture Day 3
Here is the stoma suture on day 3. His stoma site was stapled closed with three staples. The closure of the stoma site is about an inch and half long.
He doesn’t appear to have any infection in the area. The surgeon said that nearly 50% of the stapled sutures need to be opened up because of infection. The infection is common since this was an area exposed to stool. They said they do their best to clean the area in surgery but that waste is sometimes left behind.
The surgeon took off the bandage this morning, and it was totally clean, there was no oozing or anything. The surgeon did not cover the wound back with gauze, so now Mark has no bandage.
In this photo you can see all 5 incisions from the lapro surgery from step 1 (done 3 months prior to ‘takedown’ surgery)
1. The north incision is doing well a little red but no pain.
2. The middle incision right in/above his belly button is almost gone.
3. The east incision (east in photo) where the JP drain was during step 1 surgery recovery is a divit but healing well.
4. The south incision looks good, it is smooth to the touch, but still has some purple/redness. No real pain, but his underwear band does irritate it at time.
5. The west site where the stoma was that is now sutured with staples. This was the only site on his belly that the doctors worked on during the ‘takedown’ procedure.
*STAPLES REMOVED ON DAY 4 WHEN RELEASED FROM HOSPITAL. Staple removal did NOT hurt, and was done right there in his room totally casual and easy.
Photo 8: Staple Suture
Just a far away shot for you to see how it looks. On day 3 he is sitting up and feeling good.
Photo 9: Day 3 first time with clear fluids
Day 3 and he is having his first all clear fluid meal. Surgeons are being very cautious about giving him food. His bowels woke up on day 2, and he is having BM’s every few hours. No pain, no butt burn, but he hasn’t eaten anything yet either so we will update as his movements change.
On the night 3 into day 4, he was on clear liquids and he went to the bathroom 3 times during the night. His hinny skin is starting to feel a bit raw so he is tapping into the calmoseptine. He will start soft foods today, so we’ll see if ‘butt burn’ occurs or not. Cross fingers for no butt burn
Photo 10: Day 4 Staples removed and glued shut
On Day 4 before leaving the hospital the staples were removed by the resident surgeon. All he has now is the strips of tape covering the wound that are glued on the top and the bottom. Mark will have this stuck on there for a few weeks (2.5 weeks). He can shower and everything, no baths though that come over the old stoma site. He can take baths to soothe his behind but not the wound.
Update on this: Those strips of tape the resident surgeon put on only last 1 day and then they were coming off, so Mark made his own tape coverage for a few days, then he just went bare after about 3 days.
Photo 11: Going Home Day 4
On Day 3 he started solid foods. And so far, so good. When he was eating full liquids he was having fairly thick movements. On day 3 he had 6 BM’s, and 2 night BM’s. He wants me to mention that he thinks he would have had less than 6 BM’s had he been able to fully empty his bowels, but the nurses wanted him to save his urine (to prove he wasn’t dehydrated so he could be released), and having to save the urine broke up the ability to fully empty his bowels at one shot.
Today, on Day 4 (released from hospital). He is now on a full day of solids, and his movements are not so liquidy, and farther apart in time. Movements every 3 hours or so, and he has no urgency and can hold them till he reaches the bathroom.
No night leaking, and moderate pain from hemorrhoid tissue..
He is thrilled to be out of the hospital and will keep ya’ll posted about movement frequency.
Day 5 Update: After being on solid foods 2 days, he had night frequency about 6-8 times. Butt burn of some sort is starting, and there is some pain around the suture site (not on any pain meds now). He is going to start playing around with his metamucial amount.
Photo 12: Day 7 up-close, Fiber & Imodium
Day 7, and he is having about 6 movements during the day. He has ranged from 2 to 4 movements the last few nights. Various issues are not relating to butt burn that we’d heard so much about, but trouble with existing hemorrhoid skin tags. The tags are swelling and causing severe discomfort that no over the counter cream is helping.
There is still much to learn about his new ‘plumbing’ but it is gong as expected. The emotional transition is a lot considering the 3 months with the temporary ileostomy allowed great freedom for living away from UC.
Mark is using a fiber supplement in the morning to help thicken up his movements. He was given fiber in the hospital right when he started eating solid foods. Also, around week 2 he started trying imodium to see if that would help slow the night movements. Here was a great post where Jan explains in the 3-4th post down How imodium works explained – understanding how the medicine works helps Mark use it better. He also uses the generic brand from Costco it is so much cheaper than imodium and comes in a bottle so you don’t have to open up those wasteful individual packages 4 times a day.
Mark is also slowly trying to hold his movements and not rush to bathroom every time he feels some pressure. It was mentioned to Mark to try to slowly hold going to bathroom to help, but to only do this in little bits as the pouch adjusts.
Photo 13: No Suture Day 7 Full shot- Grumpy Moods
Mark is tired and a little grumpy. He isn’t sleeping at night due to BM frequency, and it seems the emotional of reverting backward to some familiar UC ways is challenging.
We were prepared for this as much as coud be but the emotional aspect of seeing symptoms like UC, is hard. It has made Mark quiet (an old habit), and it has made me (Megan) irritable and I feel like screaming at times. I know this disease is about Mark and his recovery, but it does take it toll on immediate loved ones who provide the emotional support. I just want to preach to anyone who is dealing withdisease like this that the sick person must always treat their loved ones with respect, you can be grumpy, scared, quiet, remove affection, etc…but you must do it in a way that doesn’t punish your carers or make it harder on us than it already is, and please know we aren’t sick like you are but we do ache inside because we love someone who we watch struggle to be healthy. Okay, I’m done preaching now.
Nevertheless, recovery takes time, time, and time. And we were prepared that this recovery would take time and have many ups and downs. But it is one thing to be prepared and then it is another to experience it.
Photo 14_stoma site healing Week 3
Here is the stoma site healing up after 3 weeks since take down. Isn’t that strange how the stoma ghost is still around the suture. Anywho, the wound is healing well, no infection and just itches at times.
Photo 15_3 weeks past_stacking wood
Hello Winter! We had two cords of wood sitting there waiting to be stacked that arrived prior to takedown and it sat there through surgery. The good news is that 3 weeks after takedown Mark felt great and was stacking wood. He is going back to work on week 4 (surgeon approved him to do his type of work after 4 weeks). However, he has been doing office type work since early week 2.
At the end of Week 4 after takedown, all is going really well. Mark went back to physical work this week on an interior remodel. He was able to work full days and felt good. He was surely tired at the end of the day and is resting this weekend. His moods are much improved now since we are getting back to living a “normal” life. His movements are about 2 at night and 4-6 during the day. He is on 2 immodium in morning and glass of metamucil, 2 immodium at night before dinner and glass of metamucil. He thinks the fiber is helping thicken him enough so he can fully evacuate. And the immodium he thinks is helping his frequency decrease.
No complaints, 5 weeks in jpouch life and is going well!
Photo 16_And Life Goes On.
Okay, so here is Mark after 10 Weeks Post Takedown. As you can see he is coming to life. It has been years since he snowboarded as his UC did not allow board sports easily (ski lift, bathroom, urgency…not a good mix).
He is actually volunteering to help a program that takes kids snowboarding who use modified board equipment due to movement paralysis of some sorts. He is really excited about this and he can’t wait to snowboard again.
Photo 17_ Healing 10 wks post takedown
Here are the scars after 10 wks past takedown, and for the other 4 scars it is now 5 months! And his scars are looking really good.
He is still taking 2 immodium in morning and cup of metamucil. And he takes that same “cocktail” in the evening before dinner. A few weeks ago he didn’t take the immodium or metamucial, and he was in the bathroom a lot more. Made him realize that those are necessary for him to regulate his movements. He is averaging about 6 times in a 24 hour period. Some days are more/less than others. He does have some butt burn, but comes and goes, I’m sure it has to do with his food. We eat tons of tomato based sauce/foods and maybe those are the issue but he still eats them!
No photos to show right now, but all is going well. About 4-8 BMs per day. 1-2 per night. He sleeps deeper than he ever has, he feels good, doesn’t stress about going out. It is like a whole new life. We will post some new scar updates in a couple months.
You can click here to follow the most recent posts of “Living with a J pouch” Life most definately improved after j pouch surgery and recovery :) http://ucstory.wordpress.com/2008/06/02/veracruz-mexico-photos/
9 Month Jpouch Update: Doing great, here is a link to some updated info and some 9 months after takedown photos: http://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/
15 Month Jpouch update: Still doing great, here is a linke to 15 months living with jpouch and photos http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/
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