Since I got home from the hospital, my stoma has been somewhat retracted. I have a loop ileostomy now, so I have two pieces of my intestine forming my stoma instead of one. The working part retracted quite a bit, but went to the point of near disappearance a couple of days ago. Because the stoma was flush with the skin and my skin was sort of concave around the stoma, the output started to continually break through the flange (and by continually, I mean it broke twice at work and a total of 8 times in 24 hours). It was an incredibly frustrating and painful day (my skin is a disaster). I used ever flange I had, and had to go to the medical supply store at 8am in desperation to find out what to do. Thankfully, a woman there called Coloplast (I usually wear their products) and got some advice on which products would work.

I thought it might be useful for anyone who has this happen in the future to know that the basic idea of what to do is to use a convex flange and a belt to help keep it in place. It’s working for me now and the stoma is starting to come back out again, it seems. Also, a retracted stoma is not dangerous or any type of emergency. I was pretty panicked when it first happened since I’d never even heard of it happening but my surgeon wasn’t concerned at all. He did arrange for me to meet with a stoma nurse but he didn’t bother changing the appointment that I had already had for week later, which I actually found reassuring (especially since my first concern was that it was going to completely disappear back inside my body somehow!).

These posts might also help out:

• February 10, 2010 -- Making Ostomys HOT! (3)
• June 10, 2009 -- The First Surgery: One Month Later (9)
• March 3, 2010 -- University Research on Jpouch Social Support Sites (7)
• February 25, 2010 -- Commenter with Questions (13)

The Scars:

I’m amazed by how well the laproscopic scars healed up. They look like tiny papercuts. Well, except for one. The largest of the lapro scars (on the left, below the previously existing scar) is still healing and has a long way to go. It might get infected, so to avoid this I have the band-aid on. This particular scar is a jerk when you compare it to the other ones. The large, main scar above the pubic bone is healing up nicely. The small purple spot is where the JP Drain was. Not too shabby, considering they shoved a tube in there. All in all, I welcome the 6 new scars (it will be 7 once the takedown surgery patches up the stoma). I’m still bloated and lost some definition, but I think it’s hilarious that the LoveNox injections I give myself in the love handles (for a tiny blood clot incident) are leaving more marks than a massive surgery. Yay, fear of needles!

1) Lapro: super tiny and disappearing; 2 and 3) Lapro: almost gone; 4) JP-Drain; 5) The Big One; 6) Oh look an intestine sticking out; 7) Lapro: Band-Aid protecting scar

The Stoma:

Do you feel left out for not having an ileostomy? Do you get made fun of for not having a stoma? Well I’m here to help! Simply glue a red Dots candy to your stomach! It’s pretty much the same. Expect my Dots candy likes to poo when startled. And to poo just for fun.

The medical community is telling me that my stoma is fairly tiny. I guess there are varying sizes? It’s between 7/8″ and 1″. The stoma’s opening itself is close to the surface of the skin, so this causes skin irritation close to that area. I haven’t named my stoma yet, although the name Stomie “Squirt” Stoma, P.I. is winning so far. I’m open for suggestions! I do have a character profile in place. Stomie “Squirt” Stoma, P.I. solves mysteries each week with it’s crazy detective and observational skills. Sort of like Murder, She Wrote but with more.. poo. Last week we solved the mystery of the missing Pringles! It turns out I ate all of them.

Left: Eww gross yuck ewww; Right: Yay!

The Ileostomy Bag And J-Pouch:
One month, zero leaks. Yes, I realize the leaks are inevitable and I came close to getting leaks. But I have had no emergency patch jobs yet. To make up for this, my body (who is holding a grudge against me for not enjoying cheese cake during my hospital stay) is sometimes leaking through the bum when I sleep. Apparently when you sleep, your muscles are relaxed and you can have discharge through the J-Pouch. It’s not regular clock-work leakage, and it’s not exactly gallons of fluid, but I play it safe and have a pad thingy available when I go snore away. How common is this for folk with the j-pouch? Will the leakage stop once my bum clenching muscles wake up?

The Home Nurses and Costco:
For some magical reason, my insurance covered all of the surgery and hospital bills but won’t cover the actual ileostomy bag supplies. I’ll have to pay out of pocket for these goodies, but until then am blessed with Home Nurses and what I can only describe as the equivalent of Costco’s sample stations, but it’s Ileostomy Bag samples. They bring in all of these samples for me to try. I’m still finding out what works best for me (a convex two piece velcro baggy seems ok so far), and I’m enjoying the free samples while I can. When I’m going to buy the supplies, I’l be dang sure it’s the kind of supplies I like. I have a belt strap thing that helps keep the bag hugged to the body, but are there any other crazy goodies I should know of? Any hot tips? These bags don’t seem to hold their shape, so I’m always cautious about half holding the bag when I walk around. And for those with ileo bag experience, how did you uh… exactly empty it? If you’re too high up from the toilet bowl, it will splash toilet bowl water everywhere. In order to get close to the bowl, you have to kneel or aim veeerryyyy carefully. What gives?

Left: Newly changed bag with the awesome strap/belt thing; Right: My interpretation of 30 minutes later

Diet
Oh Bratwurst. I miss you. And any sausage with casing, for that matter, which just happens to be my favorite food. But nay, I shall not become depressed! Instead, I’ll drown my sorrow in meatloaf. I’m still having inconsistencies with my poo. Sometimes it’s thick-ish, sometimes it’s pretty liquidy. I’m still finding that balance as to what works, but out of curiosity, what fiber supplement works best? BeneFiber? MetaMucil? Colon-Blow?

The healing process is an amazing thing. I can’t wait to see what my progress is a month from now.

These posts might also help out:

• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)
• February 25, 2010 -- Commenter with Questions (13)
• December 21, 2009 -- Update (6)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)

He asked about the output from my rectum and said that I only had mild colitis in my rectum at the checkup but that it could have been healed over by now. I was starting to get excited, because this procedure seemed like it was going to be easier. An ileo-rectal anastamosis is where they just connect your small intestine to your rectum. With the J-pouch procedure, they take the rectum out, so it can’t be done that way. But few people are able to keep their rectum and so a IRA would seem like a good option for them. Since I had dysplasia in my rectum, I would normally not be a good candidate, but since he said I was young and had good overall health, he didn’t see the dysplasia coming back very likely. Plus, he knew I was gay and was worried about my lifestyle, so with IRA, I would still be able to have sexual intercourse. This was like a dream and I started to cry in his office, because I couldn’t believe that this was an option for me and that I would be able to feel 99% normal and not lose any part of my gay identity.

He did say that if the colitis came back bad in my rectum or if I kept getting dysplasia, that I might have to get the J-pouch in the future, but since I was young it could buy me 5, 10, or 20 years. I was totally fine with this and just relieved at the opportunity. Also, you can start using the IRA right away, so they were going to take down my stoma and let my bowels start working again. So, one day before my planned J-pouch procedure, we changed everything and set up to do a totally different surgery. It was a little un-nerving at first since I had prepared myself for the J-pouch but was exciting to know that this would be my last surgery and I wouldn’t have to get a third one!

So the next morning came and I got myself ready and said goodbye to my stoma. We checked in for surgery and did the usual IV setup and heparin shot and all that good stuff. I was wheeled outside the operating room and asked the usual questions about allergies and anesthesia problems. But when they asked me what procedure I was getting, I wasn’t totally sure which one they were doing, so I had to list both just in case. I was brought it and laid on the table. That brought about my favorite part of surgery, which is right before they give you anesthesia, because you are still conscious, but you know that any second you are going to feel extremely relaxed, then unconscious, and then wake up what feels like two seconds later and everything that you’ve stressed about for the past several months is over with. To me, it’s a great feeling.

And that’s what happened. I woke up in post-op and immediately felt my stomach, because I wasn’t sure which procedure they were able to do, so I wasn’t sure if I still had my stoma or not. When my hand landed on the area, it felt smooth……it was gone!!! That means they were able to do the IRA and it was successful enough that I didn’t need to stoma anymore. This was the best result I could ask for! My mother came in with my aunt that we were staying with in Ohio. She came up to me and said “I got bad news…..you’re gonna have to go to the bathroom again!” Haha, it was her crazy sense of humor trying to tell me the surgery was a success.

My mom with me in the hospital room.

I was brought to my hospital room about an hour later and setup with the usual things I need. Ice chips, the breather that you have to breath in 10 times every hour to keep your lungs clear. It was harder this time, since the lapryscopic pain was in my chest and diaphragm. The first surgery gave me muscle pain in the shoulders, but I guess most of it was in my diaphragm now and that made the breathing apparatus harder to do. I also got the heparin shots twice a day as well.

Using the breathing apparatus to keep my lungs clear.

Walking around the halls with all the machines and tubes connected to me.

I was dying to look at the new scars, so when they changed my bandage, I got my first glance. It was weird looking. The doctor told me, they couldn’t sew it shut, since it’s a high-risk of infection area, so they had to sew the underlying muslces, but the skin was left open. So it was like a hole in my stomach. It was about the size of my belly button and looked like a gunshot wound. I was really worried that it was going to leave a big scar, but the doctor said it would heal up pretty well.

The hole in my stomach.

One of my least favorite things was that I had both a catheter and a rectal tube. The catheter was fine, but the rectal tube was a little uncomfortable. I had thought that it was taped to my butt, because I felt a little tug,  so when I went to adjust it, I found that it was sewn in! Not sewn into the anus, but the tube was looped onto a stitch that went into my butt cheek to keep it in place. Haha, that made me very nervous to move. On the 3rd day, I got the catheter removed, but the rectal tube stayed in. I noticed that day that I was feeling a little bloated and asked for the rectal tube to be removed. They told me it would help pass things and should be kept in until I was on semi-solid food. I had that feeling all day and was not even hungry. I started feeling really tired and randomly slept all afternoon, which was not like me at all. By the time I woke up, I knew I reallllly had to go to the bathroom and so I got up and went to the bathroom, thinking I was going to need to do something about this tube. I barely made it to the bathroom in time (all that darn equipment and tubes you’ve got to take with you) and I just started going to the bathroom around the tube. It was like it was blocked and coming out anyways. Nothing was even going through the tube. I felt a little bit of relief and told my mom to get a nurse to take the tube out. Someone came in and snipped the suture and pulled the tube out, which made me have to go to the bathroom again. I went right back in and ALOT of stuff came out. It was a major relief and felt like I lost 2 pounds. It was mostly liquid, but no blood or anything.

With all that done and with me off the morphine and on solid foods and going to the bathroom fine, I was cleared to go home the next day, which was Saturday. I had really bad sleep Friday night since it was my first night without the tube, I was going to the bathroom like every hour. My new digestive tract was trying to get itself adjusted and just wanted to keep being used! It was kind of annoying, but I knew to expect it and I also knew it was going to get better. They said I should erratic bowel movements for about the next six months.

Home from the hospital with my bandage still on.

The next week was me going to the bathroom about 10-20 times a day, but it progressivley got slower and once I started experimenting with imodium, it helped alot. As for the scar, it formed a membrane within a couple days and then just was healing faster than I thought it could. It eventually became a scab and thats when I could stop wearing the bandages. There were no other cuts from the surgery besides the belly button, so it was a much easier recovery than the first one. I was pretty much able to get up and walk around from the time I got home from the hospital. And there were no blockages or problems with food, so I was happy with that. I would say my recovery time was really only about 2 weeks this time. I was still on a weight restriction, and couldn’t start work for 4 weeks.

As I write this, almost 7 weeks posts-surgery, my scab is gone, I go to the bathroom about 4-8 times a day, I’m back at work, and feeling better than ever. I had my follow-up appointment last week and the doctor said everything seems fine. I need to get annual scopes to make sure everything is still good that there is no colitis or dysplasia, but other than that, I can finally say that my life is normal. At least me health is, I can’t account for the rest of my life! Haha.

One week post-surgery.

One month post-surgery.

Seven weeks post-surgery.

Seven weeks post-surgery. Mostly healed!

These posts might also help out:

• December 20, 2009 -- New website for gay people who are affected! (5)
• July 15, 2009 -- Don’t Ask, Don’t Tell (12)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)
• June 19, 2009 -- Colitis to Dysplasia Surgery (1)

Surgery day, March 27th, seemed like torture as I laid in my hospital bed with the clock on the wall across from me. I watched the minute hand tick as I waited for my 3pm surgery. I was finally taken from my room and wheeled down to the basement where I would have my 6 hour surgery. My doctors told me that I would feel better almost immediately, and I really did. The day after surgery I felt a different kind of pain. It wasn’t my usual sharp pain that made me sit in the fetal position, but just normal pain from just having surgery. My colon was sent to pathology because it still had to be determined whether it was definitely Colitis or Crohn’s. My colon was diseased at the sigmoid colon and then it skipped a large part that was “healthy” and the colitis showed up again at the ascending colon. This is uncommon in Colitis which led to the possibility of Crohn’s. I was relieved when the results came back as Colitis. I think for a split second it was the only time I was happy to have Colitis.

I must confess when I found out I was going to have a temporary ostomy, I did not take it well. I thought I was going to look like a freak and everyone would be able to notice. I told my parents I wasn’t going to leave my house the entire time I had it, I wasn’t going to do anything and just sit at home. The first time I saw my stoma, I didn’t know how to feel. I couldn’t handle the fact that part of my small intestine was now sticking out of my skin, this is not how it’s supposed to be. I eventually got better with it and with the help of amazing ostomy nurses I learned how I would take care of it for the next couple of months. I remember seeing my doctors for the first time after my surgery and asking when I could eat, it was the first time in months that I actually had an appetite. My doctors told me I had to name my stoma, I told them I didn’t plan on getting that attached. Little did I know how attached I would really get to it. I eventually gave him a name, yes somehow I decided it was a male entity and his name was Jeffrey. I was finally released from the hospital and returned home where I had a home nurse for a few weeks. After a month or so I finally returned to school and was able to finish the semester only having to drop 2 classes and miraculously achieved a 3.75. My biggest fear of not being able to stay on track with school was over, it was now summer and I was in the clear, or so I thought.

My next surgery was scheduled for July 23rd. I figured this gave me 6 weeks of recovery to start school again in the fall. Everything looked good, my health was up, and I felt like a new person. I must say that though I thought I would never leave my house with an ostomy I did everything I would have done without having one. I went camping, went on a road trip to Ohio, swam, went to amusement parks and went on rollercoaster’s, went tubing on the lake, lived a normal life. My friends made living with Jeffrey so much easier. We joked about it and by having a common name like Jeffrey made it possible to talk about it no matter where we were. My friends never treated me differently and I appreciated that the most throughout my whole ordeal

I went in the morning of my surgery; everything went as planned though they were unable to connect everything in one surgery, so I still had Jeffrey which was a disappointment. I would continue to be let down when I found out I had gotten an infection inside near my pouch and another one in my incision. On the plus side, due to my infection I received a private room which made it easier for my mom to stay the night. I must mention the hospital I had my surgeries done at was an hour from my home so my mom stayed with me every day and night. I am thankful to have a mom who stuck by my side as much as she did, I don’t know how I would have gotten through it all without her. Due to the infection in my incision I had all my staples removed and the incision was wide open and it was packed. Doctors would come in daily to check and see how the infection was. When I say doctors I mean many doctors, there were like eight of them standing all around my bed and they would lean in to see my huge incision. I felt like I was a patient on Grey’s Anatomy.

I was finally released from the hospital 17 days after my surgery to go home on antibiotics for my infections. Once I returned home, my home nurse was re-instated and things seemed to be going ok. That all went downhill really fast. I was vomiting and became really dehydrated. After 8 days of being home, I returned to the hospital to get liquids and was admitted once again to keep an eye on me. After being in the hospital for 8 days I went home with my second picc line for antibiotics, my first one was taken out after a few days because I developed a blood clot in my arm. Things seemed to be going well and after a CT scan showed the infection near my pouch was gone I had my picc line removed. I returned to classes but my health started deteriorating again. The second week of classes I found myself back in the hospital due to dehydration. After finding out that the infection had come back I had a third picc line put in. I also had a tube placed through the top part of my butt and placed near my pouch where the infection was to hopefully help drain it. Now I really looked like a freak. I had a tube attached to a bag coming out of my back that I had to pin to the inside of my sweatpants, a picc line hanging out of my left arm, Jeffrey was still there and I had lost about 50 pounds since the whole thing started which meant all my clothes were falling off of me. Still I was determined to go to school and with the help of family they drove me the 45 minutes from home to St. John Fisher College. Things definitely started to look up, I had my tube removed, then eventually my picc line and I felt fantastic. My third and final surgery was scheduled for December 10th, the day after I finished my finals.

My third surgery went so well, better than I could have guessed. I went in on Wednesday and returned home on Friday, my shortest stay yet! It’s been almost a month since my surgery, my incision isn’t completely healed but I feel great. I feel like I’ve been given a second chance, I feel like I’ve started a new life. When I was going through it I would sometimes find myself asking “why me” but feeling bad for myself wasn’t going to get me anywhere so I sucked it up, dealt with it, put my best foot forward and kept going on with my life, trying not to let it take over me. So many people have said, “You’re too young to go through something like that”. I feel it was the best time. I was at the age where I could understand what was going on, research stuff on my own, had the ambition to go on and achieve all that I wanted, and had the great support of amazing friends to help me through it all. I think surgery was the best thing that has ever happened to me, my best decision (not that I really had a choice). Now that it’s just about a month since takedown I find myself going to the bathroom about 6 times a day with the help of Imodium. This seems like nothing compared to the 20 or more times before my surgeries. What doesn’t break us makes us stronger, and I feel like I have grown a lot as a person since all of this has happened.

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 27, 2010 -- Colston Thomas Mills (4)
• February 25, 2010 -- Commenter with Questions (13)
• January 4, 2009 -- Boots’ UC Journey (0)

Over the next 5 years I tried multiple medications, Prednisone, Immuran, Asacol, Lomitil, Rowasa enemas, nothing gave me relief. Also over those 5 years I had a child, though advised not to, and continued working, I run a group home caring for developmentally disabled adults. But pooping my pants in public and paranoia that surrounded being in public and begun to take their toll, I was not the happy person I once was, the UC was controlling my life, as much as I tried not to let it, I had become it’s prisoner.

In June of 2004 I had another Colonoscopy, I had been doing some research and had learned about j-pouches. In my groggy state during the colonoscopy I remember looking on the monitor and seeing my colon, it was a bloody, pus filled ulcerated mess, my insides were rotting inside of me, I told my GI right then and there that it needed to come out. I found a CR surgeon that I liked and scheduled a 3 step, possible 2 step j-pouch surgery for September 24, 2004. I woke up with a total proctocolectomy, rectum and colon removed, no j-pouch formed, my rectal stump (anus) intact, and an end ileostomy…A BAG!

I never went back and had the j-pouch done, as I came to the realization as I lay in Hospital recovering, I was laying in the Hospital recovering, I was not jumping up to use the bathroom. My recovery was not easy, I had some complications, but once I got back on track, I felt my old self, my true self returning. I was able to be the Mother my son deserved and needed, and the Woman my Husband had married in the first place. Yeah, I had a bag hanging from my belly…so what? At least I could sit through a movie, wait in a line, and hold my sleeping child in my arms, things that were not possible for me before.

One of the things that also has helped me on my journey has been my involvement with the UOAA, it started when I heard about the 2005 National Conference to be held in Anaheim, CA. Since Anaheim is only about 90 minutes from our front door, I decided that my Husband and I should attend, it will be good for us I thought, and we would probably never go again.  Well that Conference was a life changer for me, I already was confident and secure with my ostomy, but did feel alone.  Walking into a room with hundreds of other ostomates, and specifically about 75 other Young Adults with ostomies was one of the most empowering moments of my life, and really changed the course of my life, it gave me a new focus.

Since then I have become the Vice President of the Ostomy Association of San Diego, and continue to serve in that position, traveled to Irvine, CA, Chicago, IL and Cleveland, OH twice for UOAA (United Ostomy Associations of America; www.uoaa.org) and YODAA (Young Ostomate and diversion Alliance of America; www.yodaa.org) Conferences, and plan on attending the UOAA’s 2009 National Conference in New Orleans, LA. This past summer I was a volunteer Counselor for Youth Rally (www.rally4youth.org) a Summer camp for kids 11-17 with ostomies, diversions, IBD and bowel and bladder incontinence. I always look forward to spending time with my “second family” the people that I have met along my journey. We all share an instant bond and connection, we have walked similar roads and understand what the other has been though, you won’t find pity, but you will receive support, love and understanding.

Looking back, of course I wish I never got sick and would never want to have an ostomy, but this is the path my life has taken. I choose to find positives and lessons in everything, and make it my mission to reach out to other people helping them find acceptance and happiness with their ostomies just as I have.

I feel that support is very important, when it comes to ostomies you have to seek it out, you would never know another person on the street has an ostomy or diversion, so using the internet and support groups is a wonderful resource and I encourage everyone to learn more, whether at a local support group meeting or online on the wonderful discussions boards available, especially at www.uoaa.org.

As for me, I continue to run the group home, my son, Hendrix just started Kindergarten, and my Husband and I are about to celebrate our 10 year wedding anniversary. I continue to have great adventures and good times, we have traveled, my son and I take Kung-fu, I swim, snorkel, ride my bike and live a happy and active life. My ostomy does not hold me back; it has given me back the life I always wanted.

Hiking with my Family on the Road to Hana

Me, swimming in Maui, HI

These posts might also help out:

• November 23, 2008 -- HI EVERYONE! (3)
• May 11, 2008 -- UC to J-Pouch Surgery (24)
• January 25, 2009 -- Jessalynn (10)
• July 20, 2011 -- 2 Years Post TakeDown (6)

My incision and stoma after step one

During the second of three surgeries (I had a three-step surgery, instead of a two-step surgery) a complication occurred where my small bowel was perforated. Here’s what I can remember of the occurrence. Everything was fine, I even asked the surgeon to sew up my incision instead of having staples (this is usually a choice, ask for it if you want it!). The first surgery left a huge scar, and by sewing it up I could minimize the scar the second time around since they use the same incision point for surgery #2 of a three step process.

Everything was great for a day or so; I had a nice, clean incision, I felt fine. Somewhere during the second day, I remember now that it was a Thursday, I started feeling cramps — well cramps are hard to imagine considering I had my stomach slit open. Maybe “crampy” is a better way to put it. After a while, it felt as though I couldn’t relax my abdominal muscles, then I couldn’t relax almost any muscle in my body. I tried to sleep after a dose of morphine (which gives me terrible dreams by the way). My wife was sleeping on a cot in the hospital room (something she always does when I have complications). Around three am I awoke and could no longer sleep: my muscles were tense, my mind was racing, I could not relax any part of my body. I was concerned about this tensing because I didn’t want to reopen the incision that was not healed yet. My wife tried to comfort me, told me to relax, but relaxing was impossible. I can’t recall the next few hours but I went into emergency surgery early Friday morning.

My incision after step 2's emergency reopening

Because they had to reopen an incision that was just closed not more than two days ago, the manner in which they closed the incision looks a little different than most people’s. See how it curves left and right (the picture is sideways: feet to the right, head to the left). I’ve posted a photo here with the hopes that it will help others. My takedown, or step three of the three-part surgery, was on 11/4/2008. I’ll post a photo of the current scar in a few days. It really isn’t that bad despite the way it looks here.

Sure, it took a little longer than most for me to recover from having two fully invasive surgeries on almost adjacent days. I was in the hospital for two weeks instead of one, and for a week or two out of the hospital I was very weak and still somewhat nauseous, but I held in there.

Hang in there everyone!

These posts might also help out:

• January 25, 2009 -- Jessalynn (10)
• May 11, 2008 -- UC to J-Pouch Surgery (24)
• April 5, 2010 -- Home from Surgery #1 (1)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)

Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments! my email is yesac87@hotmail.com

sick times

I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.

big face

Casey’s Blog and Photos Here

These posts might also help out:

• December 28, 2008 -- Sarah’s Permanent Ileostomy (8)
• May 11, 2008 -- UC to J-Pouch Surgery (24)
• February 13, 2010 -- Take a walk in my shoes (93)
• February 10, 2010 -- Making Ostomys HOT! (3)

Mark had Ulcerative Colitis (pan colitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to commit to the surgery.  Many dietary and herbal options were tried as well.  Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets.  It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted.  The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy.  This has been the best decision for his health and quality of life.   Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..

In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency.  Then the related symptoms from those main symptoms were of both physical and emotional in nature.  The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch).  Go to this site here if you want more info:  J-Pouch Illustrated.  And  Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.

These posts might also help out:

• January 25, 2009 -- Jessalynn (10)
• December 28, 2008 -- Sarah’s Permanent Ileostomy (8)
• November 23, 2008 -- HI EVERYONE! (3)
• June 17, 2008 -- Getting Healthy Story #3 – Jeff (0)