Photos 2: Ileostomy
Life Inbetween Surgery #1 & Surgery #2
(3 months between surgery #1 & #2)
Medicial/Accurate: Surgery explained with text and images
**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.
Picture 1: Stoma and Scars
Here is the stoma (temporary loop ileostomy) after 6 weeks. We put a quarter there so you could see scale. His scars look good, and he has a shaving rash under his belly button. Overall his skin is doing well under the ostomy wafer, but there is some redness, not too bad though.
The south scar is flat and healing well. Look at the scar above in his belly button, it looks pretty good, eh?
Picture 2: Mark and Dad- 9 days after step 1 surgery and 9 days living with new stoma
Mark is reading about how to care for his ostomy shortly after the July surgery. He can’t work but he is there giving his Dad moral support. Ironically he is reading in this picture a SUPER helpful post that was on jpouch.org site. Jason’s Ostomy Instructions taught Mark about how to care for his ostomy, way more helpful than what the ostomy nurse tried to help with. Survival with the appliance is talking with others who have one! Tips for new Ileostomists
Picture 3: Table from the “No Colon” Party – Be Sure to Celebrate!
We threw Mark a small “Welcome home, you have no colon” party, we had friends come into town and suprised Mark. We unfortunately were having so much fun, we didn’t take pictures of the actual party. We HIGHLY recommend that those going through this journey do celebrate the big things (like coming home from the hospital). It is so important to celebrate our friends and family while we have them with us.
We noticed that from having sent out the photo blog as emails and cell phone pictures to our main people while he was still in the hospital, made it easier for people to support him. So, at the party our friends/family were comfortable asking to see the stoma, watching it work. And in turn what this did for Mark was make him feel comfortable with the stoma and the situation.
We learned to celebrate from watching others enjoy their health instead of mourning the changes, for instance, Michelle had this incredible post running about what is your “best day” and she talks about her colon party: http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/1681082832/p/1
Picture 4: 16 hour total stoma blockage (how we handled the blockage)
First, we wrote a post on jpouch.org and received fast responses which you can see here No Stoma output and vomitting Post. What this did for us was allow us to remain calm because we had support online it wasn’t us going through this alone, but below is how we actually dealt with the blockage.
He had his first total blockage of the stoma, for 16 hours he created NO output! He became ill and vomitted 4 times in 4 hours. We tried the blockage remedies of hot compress, walking, shaking hips back and forth, grape juice, hot tea.
It was the ostomy nurse (whom we called) who said for him to take off his bag, take a long hot shower to see if the stoma was swollen and to see if the hot shower would help it settle down. After the shower he drank hot tea/water, we massaged around the stoma, and he finally pooped. He was exhausted and a getting a bit nervous, I sat with him the bathroom and just massaged above the stoma (almost like milking a cow style) to try to gently move whatever along. Whatever was the problem was gone now. He was exhausted all day afterward since he nothing in his system and was only on a soft foods for the rest of day. We were about to take him to the ER to get fluids since that is the biggest concern, but we were saved by the bell so to speak. We were scared some because his surgeon was now eight hours away because by now we had gone back home. The stoma nurse said “YOU DO NOT LET ANYONE ELSE COME NEAR YOU WITH A KNIFE – If this is serious we will fly you down here and get you to your surgeon.” This made us feel better to know there are ways to have surgery in places far from home and get back to the care you had if an emergency happens.
4 days later and Mark is still drained from the effects of the blockage. His body is exhausted and he quickly has reverted back to his UC ways of ‘hating’ food. The lesson in the story is to really be cognizant of the foods you introduce. (Update after takedown – we learned that it was likely not food causing this and his other later blockages, but that he had some scar tissue that the surgeon later found during the “takedown”).
*I have to admit this was a really long, and scary night. It left both of drained emotionally because of the unknown again of what might be happening. Just be prepared to be gentle with yourself and your loved ones helping you through this process — it can be really emotionally draining and you need to give yourself and your family time and room to heal both physically and emotionally.
**As we understand having stoma blockages is not hugely common (but not uncommon either), some people do have them, we think that maybe his blockages were scar tissue (surgeon said he found some scar tissue during his takedown).
***Ostomy bags come in other styles, and they are not all clear so you don’t have to see your output. I’m not sure why but Mark likes the clear ones, he is always checking out his output. I guess it is a good way to learn what foods will do when he starts using his jpouch in a 8 weeks. Also, if you have a stoma, you really need to watch this thing work, it moves around, breathes, sputters, and if you watch Family Guy and you know Chris’s talking pimple Hank you’ll understand the stoma.
Picture 5: Mark 3 Months Post 1st Surgery – Back to Work
Mark at work during week 13 after step 1 lapro surgery, and doing well. Here is at a job, he built some arbors for a client.
After 6 weeks he felt great, and was cleared by the surgeon to get to work (don’t do anything till the surgeon clears you is the most important rule : ). Our biggest concern was him lifting things too heavy. But the surgeon said it would be fine, and he has been back to work for 7 weeks and doing well.
For those going into surgery a big question is ‘how long will I really be out of work’; for Mark the first few weeks after week 6, he was back at work, but he would get tired easily, so he did work half days on and off for about 4 weeks.
Also, no complaints with the ostomy bag, life is more normal with the bag than it has been in years. He is able to lift things and move around without problems. He does not wear the phoenix belt very often anymore, he found the belt was too hot and restraining for him, but others love the belt and we recommend you try it out for yourself because it may be just what works for you.
Picture 6 (series): Ileostomy and wearing ostomy bag using the Phoenix Belt
*For Mark we didn’t document his changing of the appliance, and this is a question we get sometimes. There are great resources for learning how to live with the appliance, however, here is a great photo and text explanation 12 Step Tutorial on Chnaging Ileostomy Bag. Other sources are ostomates.org, and Jason’s Ostomy Instructions (which was really helpful for Mark). More than anything you just need to find what works for you through trial and error, Mark changed his bag every 2-3 days, his skin couldn’t handle 5-7 days. Jpouch.org Ostomy & Skin Forum can help you out as well. Also, here is some info on where to buy ostomy supplies online that we asked on jpouch.org Websites to buy Ostomy Supplies Online.
Here are a series of photos with Mark showing how he wears his bag under the Phoenix Ostomy Support System – Belt. We’ve also heard that you can get this belt covered by your insurance. The belt came highly recommened for comfort and ease of use. It is a little awkward b/c you have to wear the belt on its side so emptying can be tricky, but it does contain that bag which can be helpful. Mark got the smallest belt size they offered (Small) and he had to have it sewn to make it a bit smaller.
Dressed with belt underneath. Getting ready to go to a wedding located 1hour away from home. It was so very very nice to go and not worry about Mark and UC problems. We still aren’t used to the freedom of living without UC. Life with the ostomy is 1000 times better.
To follow up on Mark and his next surgery “Takedown surgery” or getting his jpouch surgery click here:
Also, here is his 9 month update: http://www.jpouch.net/2008/08/08/mark-9-month-jpouch-update/
© 2008 All Rights Reserved
Here is an interesting video Colostomy Bag Change Video (not made by Mark and Megan), but it is a fairly graphic representation of how the stoma and ostomy bag works. Of course, this process varies for everyone but if you are a future ostomate of a temporary ostomy this may help you Visualize how things might work out for you. The man in the video says he changes his bag daily, Mark only changed his every couple of days. And his stool seems a lot thicker than Mark’s was probably because he has an Colostomy (large intestine b/c he only had a piece of his large instentine removed) and not an Ileostomy (small intestine, if you are getting a jpouch then your whole large instentine is gone so you’ll have an ileostomy).