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.
© 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).
m said
Hello, I see you are using my Colostomy Experience video for your blog.
Watch it in better quality over at http://vimeo.com/409849
M
Abbey said
Hi
What an excellent photo diary and very informative. I work in stoma care in the UK and SecuriCare (who I work for) also have a pouch changing video have a look at our website:
http://www.securicaremedical.co.uk/pouch-changing.asp or you can view it on Youtube ‘changing a stoma bag’.
Welland Medical our sister company also manufacture a flushable stoma pouch (both flange and pouch flush) which also maybe of interest
Megan said
To Abbey and our Readers,
We wouldn’t normally allow “spam” like comments on the site, however, we think that new ileostomates could benefit from the 4 short videos that Abbey’s UK based SecuriCare company has designed. The video on What is a Stoma is helpful in explaining the 3 different basic types of stoma.
Please note:
1) We have used any products by SecuriCare or Welland Medical so we do not know the quality of the products. Mark used Convatec products when he had his ileostomy.
2) The video shows someone with what I think is an end colostomy (I think), you’ll see that the stoma shown in the video is long at about 2 inches, longer stomas typically mean it is not a loop ileostomy like what you see both Mark and Carter have. I think the reason that some stomas are longer is that when they are permanent they function better having a longer stoma. We should ask someone with a permanent ostomy to explain this better to us.
Megan
JM said
Megan,
The video shows somebody with an end ileostomy (colostomies are typically on the left side whereas ileostomies are normally on the right, though this is only a general guideline). Not all end ileostomies are permanent, anybody who had their pouch surgery in 3 stages will have had an end stoma after stage 1.
People who have had both types of stoma (loop and end) tell me that loop ileostomies are much harder to deal with. This is largely due to the longer spout on an end ileo, this hangs down into the bag and waste falls straight into it. The much flatter loop stoma has a tendency to allow waste under the flange and thus cause leaks much easier.
One thing I have found is that those who have only ever had a loop never thought it was too bad whereas those who had an end ileo first think they are a real nightmare, I guess the two groups simply have different expectations on how a stoma will behave.
JM
Bill said
Thank you for sharing your experience. I am a nursing student working on a GI floor. I learned a lot from your posts. I wish you many happy years to come. You are a brave man, and I admire you.
Bill
mark said
Hi Bill,
I’m glad to hear that it helped someone in teh medical community, especially a nurse. I am convinced that world would come to an end without nurses. I only had one male nurse during all my surgeries, but I really like having a guy. I noticed he was a lot more comfortable with me and my wounds, where the women tended to be more cautious and gentle he just did his work and left – I preferred that. Good luck with your nursing career and thanks for doing such an important career!
Mark
cindy said
thank you so much 4 being the brave soul you are i am deciding as i read your journey weather 2 get mine or just deal with the bathroom trama all the time i really appreciate you and megan sharing with us what a great couple with a great play by play god bless yall thanks cindy
mark said
Hi Cindy,
It took me nearly 3 years to decide surgery was right for me and when that decision came to pass, it was so easy to make and felt very right. So, you just be patient with your process and let it happen naturally. At some point you’ll know if you can live with UC or want to live without UC.
We have some great resources on here for people who are considering surgery, you should definately check out the two following links:
http://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/
AND
http://ucstory.wordpress.com/2008/06/20/video-uc-to-j-pouch/
Take care,
Mark
cindy said
MY PROBLEM IS THAT MY RECTUM WALLS ARE STIFF AND WONT HOLD POOP SO I HAVE ABOUT A TWO MINIT WINDOW 2 FIND A RESTROOM AND PRAY THERE ARE MORE THAN ONE STALL. SO IM SURE MINE ISNT AS HORRIBLE AS YOU BUT I CAN RELATE 2 THE RESTROOM PHOBIA.I HAVE HAD HEMMOROIDS THAT ALL STARTED MINE HAD SURGERY THEN HAD 2 HAVE A SPHINCTORECTOMY THEN HAD RECTACEAL, THEN A PROLAPSE RECTUM SURGERY NOW THIS HAS ALL BEEN SINCE 94 SO IVE BEEN DEALING WITH THIS WHOLE ISSUE FOR SO LONG IM JUST TIRED OF IT.I APPRECIATE YOU EMAILING ME BACK IM SCARED 2 BUT ALSO NOT TOO. IM JUST WORRIED ILL HAVE TO HAVE THE PERMANENT ONE THEN I WOULD GO INTO A WORSE DEPRESSION DONT WANT THAT.
mark said
Hi,
There are so many people out there living happy and healthy with an ostomy. I mean look at Chelsea, just 17 yrs old, sick all her childhood and now she is happy with a perm ileo:
http://ucstory.wordpress.com/2008/06/07/another-inspirational-story/
I know of many others who have found great happiness with the ostomy, so try not to fear this possible step too much – if it means your health and freedom back, you’d be suprised by how adaptable humans can be
Also, if you ever to go perm ileo there are great sources like Shaz’s group here: http://www.ostomates.org/ you wouldn’t be alone while coping with the lifestyle change.
cindy said
thaks again 4 answering my mail yall are so positive it helps as i am 48 and they say the younger you are the better 4 you 2 heal so im still unsure did you have 2 take steriods after surgery or b4 it.and do you have 2 take any med 4 life if so what if you dont mind me asking? thanks again cindy
mark said
Cindy,
Yes, with any major surgery youth is probably in favor for healing, but 48 is still young
Yes, I was on 20mg of pred. before the surgery, I tried to taper off but was too sick. So after the surgery they kept me on the pred for a few weeks and had me do a really slow taper. Now I’m steriod and medicine free. I do take immodium once or twice a day, and I do take metamucil to help me thicken it up. There are others who are 100% medicine free, but for me I need a little help slowing things down and thickening up. Maybe though as my pouch gets older I will be able to stop with my two medicine like treatments.
Ken said
Thanks for all the time spent on this VERY informative story.
Ive suffered from UC on and off sense 1993. A very dormant period from 1994-2003. Ive been on predizone of and on for the last 5 years.I am scheduling my 1st surgery in early oct.
I will DEFINATELY be refering to and using this sight!
Joe said
You guys are doing the community in whole a huge service and deserve to be commended for this. I received a J-Pouch in 2005, and had I known that there were sites like this, I know I would have been a big contributor.
For those of you who are about to undergo the surgeries, rest assured that you will have your life back!
Megan said
Hi Ken,
Yes, living on/off prednisone is a good signal to consider surgery. I know with Mark it was a big thing to accept b/c he was in the cycle of prednisone, taper, get sick, prednisone, taper, get sick….and so it was easy to think “oh, he isn’t living on pred.” but in reality he was totally pred depedent and still not with any quality of life. You’ll do great with your Oct surgery, just do your best to keep a positive attitude, and be sure to read Carter’s page http://ucstory.wordpress.com/carters-surgery-photos/ His positive attitude about the whole surgery and stuff is really incredible. And keep in mind there are many excellent resources out there for you so be sure to utilize the jpouch community, we are fans of http://www.jpouch.org for anything ostomy/jpouch related.
Joe,
Thanks for sharing that you have your life back, it is so important to hear from people with jpouches how they are doing years after the surgery – you sound great!
Megan
mary said
hey very interesting story, i don’t even know how i ended up at this site but i’m glad i did. i’m 35 and have had an illiostomey since i was 16 i had a severe case of chrones and am now just coming out of remission and never knew anybody else with a bag. in the early internet days i looked for groups and stuff but there wasn’t alot out there and what i did find was usually people much older than me with different concerns so its nice to find somthing that i can relate to. i have those blockages a few times a year and they suck. its usually my own fault tho. the last time i had one i was pregnant and was craving dried apricots i ate the whole container not my best idea. i usually just do the grape juice thing and curl up in a ball for 24 – 48 hrs while it works it’s self out. i also wanted to mention somthing else i learned while i was pregnant that waist wrap you use i found those bella belly bands are great at keeping your bag flat and from making crincly noises. any way i’d love to become part of the conversation thanks,and take care, mary
midwifemuse said
Thank you for writing this blog. My son has just had his ileostomy, two days ago, and reading your experiences is a huge help in enabling me to understand what he is going through and what else may be to come.
keith said
mark,
im getting an ileostomy done on the 30th of oct. ive had chrones for since i was 14 years old and now im 26. im very active in sports and actually played a little in college. im so in the dark about this??? ive never seen a stoma our ileostomy before but looking at your pics has been so helpful ! im scared nervious and just angry about all this becuse i think its gonna stop me from doin all the things i love to do . all i ever wanted was a family house and a good dog but with all this goin on i dont see this ever happning for me . it would be awsome if you could just let me know how you delt with all this . and from what the docs are saying to me is that mine cant be reversed ?? and ive never herd of the j bag before this web site . thanks for the pics
- keith
mark said
Hi Keith,
You have had a long journey with Chrons Disease (CD) at such a young age. The surgery should help relieve some of your pain. I had Ulcerative Colitis (UC) which is like CD, but UC only affects the large colon and rectum, whereas, CD can affect anything digestive from mouth to anus.
You’ll want to get more accurate medical info on this and below I’ll give you some links, etc…but as far as I understand CD people don’t often get the jpouch like I have because the jpouch is created from the small intestine that in UC isn’t sick, whereas, with CD the small intesntine may also be sick – therefore, the jpouch wouldn’t work as well for CD. (sorry if that is confusing)
It is more common for CD people to have a permanent ostomy, and then people like me with UC to have temporary ostomy then jpouch. You’ll want to find the right sources of support for CD and Ostomy, and I recommend the following pages for you:
1) /www.healingwell.com/community/
They have an OSTOMY and Chrons forum board, use these for support and find people who are dealing with same thing as you.
2) http://www.uoaa.org/ United ostomy organization has an active forum for people living with ostomies but it won’t be people with just CD.
3) On this page you’ll find great links to videos about living with an ostomy that you may want to watch…
http://www.wrongdiagnosis.com/u/ulcerative_colitis/video.htm Be sure to watch the video on this page titled “Living with an Ostomy” it is a true story of a young woman about your age dealing with the same thing as you.
To answer your question, I have dealt with all this through seeking, reaching out and asking for support like you are now. I used the online support groups (still do), my friends and family know my story, seen my photos, I just tried to make this best I could by not being embarrassed and doing what I could to help others like me. You know, if you ever need to tell your story, we’d be happy to share it on our blog – you’d be suprised how good it feels to get it off your chest.
Most importantly, throughout the years I’ve also sought professional therapy to learn how to cope with chronic illness, fear, anger. You’ll need to learn to cope because you’ll have a better life if you can find ways to be positive not negative in this. You will need to find ways to make the best of the sitaution no matter how dark it seems at times – the goal is get your life back and to be healthy and young.
Keep us posted!
Mark
Shirley St.John said
My son has been going thru all these familiar problems for over a year now. He has finally decided his best bet is to go for the surgery. He plans on discussing this with his Doctor at M.G.H. in Boston very soon and hopes to have the surgery done just after the first of the year. He is married with three small children (1- 8 yr. old daughter and twins 5 yrs. old- boy & girl). His wife cannot take any more time off from work, so he has asked me to stay with him to assist him in the hospital and at home, until he is comfortable doing things himself. He is 44 yrs old and is trying to plan this so they have enough money to live on while he is out of work for an extended time. His boss has told him he will help as much as possible, so this will take some of the pressure off. This is a wonderful site for someone like me to know what will be expected of me in helping my son. I have five other children and this son is one of twins. I, myself am about to turn 76 yrs of age in November, so this will be a challenge. I’m saying my prayers that my health holds out in order for me to assist my son as long as possible. Thanks for all your wonderful info on this subject. Sincerely, Shirley
Megan said
Hi Shirley,
Your family is being challenged now, but you are all so lucky that you have the ability to support each other through this.
We planned Mark’s surgery for about 9 months before we did it because we needed it to work with my schedule and his, we had to get our finances settled to have him out of work that long, etc…It was a really difficult time, but between support from family and planning as best we could, we made it through and did well.
You will definately be invaluable to your son during his recovery. More than the physical help, he’ll just need the emotional support from you and his wife. I know with Mark, his Mom and myself were a huge part of helping him heal. Also, we were so good and supporting each other. You make sure that you and the wife give each other support to get through this. We always said his disease was “our family disease” because it took so many people to support the healing process.
There are WONDERFUL resources for making this transition. Especially the wonderful http://www.jpouch.org support forum. It will likely be your lifeline through the journey b/c there you can ask and learn all the stuff you need to manuevre the changes. Most importantly, it is crucial to realize you and your family ARE NOT ALONE in the difficulties you face. Use your resources like our site or jpouch.org and get the support needed to go through the journey.
Take care and feel free to write us if you need anything, our email is mdhilton@gmail.com
Megan
courtney said
What a great documentary. I have had UC for 2 years now and I am dealing with flare ups that cannot be controlled unless I use steroids. I have also been on Imuran which is an immunosupressant drug for 2 years. I have started my research into the total colectomy surgery. I am a registered nurse/supervisor, so I have taken care of a lot of colon surgery patients, but when you deal with your self; you feel very uneducated. I appreciate the step-by step journal that you have placed on the internet. I hope that you are doing well, I a just want to say that I commend your strenght and dedication.
Maud Gerritsen said
Hi Mark,
Thank you for sharing your experiences via your blog. I’ve had UC for about 6 years now and after the initial courses of steroids, tried Imuran and Infliximab. However after yet another relapse I have now made the decision I am sick of the drugs (particularly the steroids) the moodiness and the moonface!
So I’m counting down until 19 January when part one of my surgery process will happen.
Fingers crossed it will all go well, your story and pictures have made me a lot less afraid (as the unknown is half the battle).
So thank you very much.
Maud