Photos 1: Colectomy
Photos of the first Surgery of 2, The Total Proctocolectomy, with Ileoanal anastomosis formation, and temporary ileostomy
Medicial/Accurate: Surgery explained with text and images
**My story is told 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. We also wanted to show not only my journey, but also how the spouse can help healing through support and acceptance.
Pic1. Stoma Marking shown Night Before Step 1 Surgery
Here is Mark the night before surgery. The blue mark on his belly was done in a pre-op visit a few days before, the stoma nurse selected this location for Mark’s for his temporary loop ileostomy. This is so the surgeon knows where to pull his stoma through.
**We are adding this note after having this picture up for about 10 months and the comments we’ve received about how Mark looks fit in this photo, therefore his UC must not have been bad. This is really complex to address – but at the time of surgery Mark was on prednisone and humira, he was having 12-20 BMs a day, urgent with no control, bleeding, fatigue, etc…He weighed 125 pounds in this photo (post surgery weight 140!). Mark works construction so his body stayed fit most of the time, but his lowest UC weight was 100 pounds, scary times. Also, before the surgery his GI gave him two pieces of advice: (1) Get high cardio before surgery you need to be in good shape and have a strong heart to recovery faster – so every day no matter how exhausted he was after work he would come home and skateboard for atleast an hour to get in cardio. It was almost spooky how driven he was to do the cardio although he was sick and tired. (2) High protein diet. Protein helps the tissue in our body generate so it helps with healing. And yes, we did protein shakes for him and then made sure our diet was high protein.**
Pic 2: Mark with his mom, Carol, right before going into the 1st surgery
He was calm and ready to get rid of his worthless colon! Mark and his Mom prior to surgery, they put Mark under a heated blanket that is why he looks so fluffy. He wasn’t drugged here yet, but he doesn’t remember this photo being taken so the drugs that they soon gave him erased some of the early memories too. I was really happy to have his Mom there, we were able to give each other support and that was really nice. She was nervous, I was nervous so it was good to have the support for each other.
If you are a spouse and you are reading this the following note is Megan’s take on Mark’s Mom in this and what I learned. As the wife I knew that during Mark’s surgeries (especially the 1st) that I needed to leave for good chunks of time so that Mark’s Mom could have him alone. I realized although he was 32 years old, he was still her “boy” and for her to heal, I learned she needed to do the things that the wife is now doing. I found when I left she would fix his sheets, clean up the room, help with stuff, etc….Maybe I’m just be self-gratiutious but I felt it brought us closer and it let them have their bond.
Pic3: Mark just out of surgery
He was in surgery for 4.5 hours, and in recovery for 3 hours, then we were allowed to see him. The surgeon came out and talked with us after the surgery was done, we didn’t have anyone come out in the middle of surgery. And about an hour after we talked with the surgeon the anthesologist came out and told us he was awake and doing well. It was nice that they kept us well informed and everyone greeted us with smiles and warmth.
This first night was really incredible – we have had a long journey to get to the surgery, and there were times that were not so easy (to say the least). On the night right after his surgery, he was awake for about 3 hours, still loopy by not out of his head by any means. He had a private room, and his nurse that night was like a dream, she was so quiet and gentle, the hospital was quiet for nighttime, all the family was gone, and it was just him and me, and that night it was like the past 7 years of UC were gone and we began to heal. All he wanted was to be touched gently, he wanted his feet, legs, arms, head, shoulders rubbed. And together that night we checked out his belly, the incisions, the stoma. It was just a very gentle and healing night that really set the stage for us to embark on our new life. I was so exhausted from the day, and now that it was over, there was sense of calm that felt almost surreal, I’ve not felt that before.
Pic4: Mark’s belly and stoma no bandage
Here is the belly the day after surgery. Let us explain what you see here. His incisions were glued closed, so he doesn’t have to go in for suture removal. There were 5 lapro incisions made:
2 North incisions (one is hidden under stoma bag by belly button).
1 South incision near the pelvic region where the colon and rectum were removed.
1 East where you can see the Jackson Pratt drain tube coming out of his belly with fluid mixed with leftover blood is where his temporary drain was. What you see in this photos is right after surgery and draining lots of fluid out, his isn’t actively bleeding and the fluid in the belly cavity has a name that we can’t remember, he was told this fluid was totally normal and it became much less as the days went on. He had the drain removed on day 5 (not painful to remove and there was a lot of tube in his belly. A resident surgeon just removed it right there in his hospital room bed).
1 West where the temporary stoma is located. The stoma looks like a peeled cherry tomato and it has no feeling since there are no nerve endings in the small intenstine. The stoma is the small intestine that has a slit in it to allow waste to flow into his ostomy bag. We just keep staring at the stoma, it is fascinating.
Pic 5: JP Drain Image
The little bottle on bed is the JP drain bottle that has a tube connecting to the inside the body where the woundcavity is located. The JP Drain catches the left over fluid produced in the area where surgery occured. The nurses empy it out periodically through the day.
This picture is a donation from another Jpoucher, (RP) she had her surgery in 2006, with some abcess and fistula complications. This is one of her JP Drains she was generous enough to share with us so that we could complete the photos. She had multiple drains through her recovery b/c she had some complications the one not pictured she had for about 3 months – and she explains the one we see in the above photo with her quote below:
“(the left one I only had about 14 days), it got to be really nasty smelling as well and I would use the odor eliminating liquid they give you for the stoma bag sometimes inside the drain which wasnt easy to insert and it was messy. I also tried to wrap the jp in saran wrap, but none of that seemed to work … My Dr seemed to think that was from the infection inside my abdomen that was not standard drainage. The smell lasted about 4 weeks and once I started healing the smell got better.”
Mark’s drain didn’t smell that we noticed, but he did have it only for 5 days so that probably made a difference.
We wanted to add a picture of the JP Drain so that others can understand what is at the end of the mystery tube coming out of Mark’s stomach on the right side of photo image.
Pic 6: 2 piece ostomy bag not attached
Here is the bag prior to being put over his stoma. You can see it is a two piece (there is an option of 1 or 2 piece). Mark’s is two piece b/c his stoma is smallish and so this helps pop it out more. Here you can see the scale as well. Bags come in all different varietis and some are not clear, etc….. The clip on the end (long tan thing at end of bag, he uses this to drain throughout the day, he is draining every 2 hours or so. He only changes the appliance (i.e. the full bag set up) twice a week). There are tons of different bags for different types of stomas, Mark’s stoma is loop ileostomy which means it is smallish since it is temporary.
We’ve recently learned from another jpoucher that there are bag options where there isn’t a clip at the bottom but velcro. If you aren’t happy with your hospital register bag and equipment, do some searching because there are MANY bag options.
Pic 7: ostomy bag with green poop
Here is a fairly graphic photo of Stumpy in action. The bag is located towards the inside of his leg so you can empty the bag in the toilet without hassle. This bag is really full, normally you don’t leave it so full b/c it would be heavy and run the risks of ‘blow out’. Mark’s hand is by the bag to give you an idea of scale. In a moment of comic genius our friends Marianne and George saw this photo while Mark was in the hospital (sending photos to friends via cell phones – we were all curious what this sucker was going to look like). And they sent us a picture back, or Marianne’s hands next to a poopy diaper freshly made by their baby Lil’ G. I wish we still had that photo! You must be able to find humor in this situation if you are going through it.
Pic 8: stoma, green poop and thumb for scale
Mark started creating output from Stumpy the Stoma the following day after surgery. It was pure liquid and green (b/c he was on a liquid diet, not sure why it was green though – I know the drs. explained why but can’t recall now). I put my finger in the picture so you can have an idea of scale.
Pic 9: I’m walking .. yes indeed…Day 2 night
The same advice from other jpouchers was to ‘walk, walk, walk’ to get out of the hospital sooner and speed up the healing process. There were many walks around the surgery/oncology floor. There were even a few late night walks when Mark couldn’t sleep and had ancy legs, those were fun walks b/c the floor was quiet but usually there was someone else up walking too). With a private room, you can have a guest stay the night with you which for this type of surgery is really nice since you are largely unable to take care of yourself easily (can’t put on socks, etc). And the nurses do a great job taking care of you, but you do need someone around to straigthen your gown, sheets, and make sure the cathedar is draining well and not backing up. You know, all the stuff a loved one can help with.
There was another young man on the floor (in his 30s) and he had gone in for an appendectomy (sp?) and found out he had cancer that was hitting part of his colon. Now he has part of his colon missing, and it all happened to him overnight basically. He was having a hard recovery physically and it seemed he had little social support b/c he rarely had visitors (you get to know the others on your floor from doing laps). I was wearing an OSU sweatshirt and he had gone to OSU, and from there he took a shine to us, and us to him. It was a reminder of the awesome support group we have, and how thankful we are for everyone who has supported .
Pic 10: Walking with foley on robe Day 4
Here he is upgraded to walking without the stand since he has no IV but he still has his foley catheder, nevertheless, look at that grin. And the art of getting the catheder to work right, talk about a challenge (his cathedar would not drain into the foley bag and it would get backed up into the tube which made him feel really uncomfortable like he had to pee because the urine was back up, not a big detail but did take time to figure out). He was such a good patient b/c he was so patient with all of it, and he patient with me trying to document the process of surgery, etc. We felt very alone going into the surgery and wanted to document the journey for others in our situation. His positive attitude was incredible during this whole process and made it incredibly easy to care for him through this.
Pic11: Dressed in normal clothesFINALLY!
Finally in regular clothes right after the foley (i.e. catheder) came out! Day 4. He didn’t mind the catheder coming out, it happened quickly and was done by a nurse right there in the hospital room bed. It was explained to us that this surgery can traumatize the bladder since it is near the surgery work area, and it takes time for the bladder to ‘wake up’, so they didn’t want to rush removing the catheder. Mark was lucky b/c his bladder woke right up after the catheder was removed, and he was a peeing machine right away, but it was weird since he hasn’t just pee’d in many years since he always went w/ his frequent BM’s.
Pic 13: Stoma, Incisions, Day 8
Here is a shot of the belly and stoma on Day 8. You can see he has a bit of irration from the adhesive of the bag wafer (not sure how to treat that, any suggestions are welcome 🙂
Oh, the question we asked was how much does the large intestine and rectum weigh? Only a few pounds is the answer, it is about 5 feet long but light weight. And no, after the colon is removed the stomach does not collapse and fall in, a person without their colon does not look like they have no colon!
Again, these are his 5 incisions, and his stoma will change size b/c it is swollen right now. Apparently stomas change size as your weight fluctuates. Stomas bleed some when you clean them or touch them, but it doesn’t hurt since it has no nerve endings.
At the south incision in the pelvic region there is some swelling on the left side around the incision, that is fluid left over that was once draining from the drain tube. It makes a funny hollow sound when he taps on it. The doctors said if the incision becomes red or painful to come in and have it drained, so far not red or painful.
Pic 14: Clean bag and dressed, Day 8
Spending some time recovering, he is clean out of the shower and doing well on Day 8. He has lost 7 pounds since he entered the hospital, so he is a bit thinner than what he was in the first picture. In the hospital his first poop output was green, now it is brownin’ up, but seems to change color with the food. And the smell when he empties the bag is something special, it has to do with the waste coming straight from the small intenstine and the digestive enzymes. Now, you must understand that the stoma is a living thing, it is his insides now on the outside, and this sucker breathes, moves around and really has its own identity. This is a unique experience gettting to see how our bodies constantly our creating waste, but also the meaning of ‘alive on the inside’ has new meaning when you see our insides working.
Learning to change the bag at home after surgery was interesting and was definately a team effort. Mark did it on his own but until he was better at the whole changing thing, I would help to try to get the flange on before the stoma spit up. We learned from Jason PA (see Photo Set 2) that you can wrap the stoma in a wet cold paper towel that will hold any poop while you clean the skin, etc..Also, have you heard about the marshmellow trick? (Marks favorite part of the stoma was that before bag change outs he would 3-5 big marshmellows they stop you up for about a half hour. He didn’t do this till a few weeks after surgery though and he was eating more normal. JUST DON’T GO THROUGH THIS ALONE – Let someone you love help you with this transition, its a big deal and easier to handle if you can share the surrealness of the situation with someone you love.
If you are so curious we do have a live action photo of the poop machine in action that I recorded on the cell phone, very ;ow resolution but if you gotta see how the things moves and works before you are proud owner of your own you can watch this very short video of stumpy pooping at around 20 seconds.
Update day 9: I feel exhausted still, today was the first day I took a short drive in the car (someone else drove) and was exhausted and uncomfortable. My lower back hurts from laying down since my sleeping positions are limited still. I’ve been walking and walking but still get tired. My poop is thickening up, but it is really a reflection of what I eat. I changed from a 2 piece bag to a 1 piece bag and that is working better for me now.
Update day 16: No complications, and I am so thankful, and I attribute this to my awesome surgeon and his possee. I’m not needing to nap, and I’m interested in going and being busy. It is a new concept to leave the house without worrying about ‘bathroom’ needs. And I did my first drain of the bag while out running errands, it wasn’t too bad, only took 2 minutes or so, I’m sorry to have unleased the stench on the general public. I do feel like I’m in ‘recovery’ where I don’t feel UC anymore but I do get worn out, and the reality of living with my stoma has kicked in. At first, I was free of the disease which is/was incredible, but now, there is the stoma. And as thankful as I am for my new renewed health, this will take some getting used to, I mean, my small instetine is hanging OUTSIDE my body and I’m pooping off my belly. Takes some getting used to, but UC was much much worse.
**A common question that we were worried about and is often asked is about Mark’s ability to obtain/maintain an erection or issues with ED. Mark hasn’t had any issues with erections be it getting them or maintaining them. In fact still in the hospital all bits were wanting to work even though the catheder was in the way (that was a good sign, we cheered – even the surgeon asked in a follow up about erections). We loosely recall talking with the surgeon that often issues with ED are emotional in nature more than physical after this type of surgery. Although the surgeon does have to be careful not to cause damage. I haven’t had my sperm count tested yet but was told it should refresh itself to healthy sperm count (hopefully) 2 months after surgery or so.
Next step in recovery process:
Step 2 surgery is pending until his jpouch heals, the doctors will decide around week 10 in recovery if he is ready for Step 2 or not. Once he has step 2, the stoma will be pulled back into his body (so no more external bag) and he will begin using his jpouch (small intestine reconstructed and connected to anus for draining of waste). Here is the link for the next set of photos of living with the ileostomy (the 3 months between his step 1 & 2 surgery https://ucstory.wordpress.com/surgery-2-inbetween-surgeries/ and here is the link to the takedown photos: https://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/
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