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My Journey to J-pouch.. No Colon Still Rollin!

October 24, 2014

Hi All! Earlier this week I went for my 4 month check up with my surgeon and GI doc and they said everything seemed to be going great and I am doing just as expected (I think even better). They also drew blood and I got the perfect results yesterday. All my levels are in the normal range, my inflammation markers and blood count included! Yippy! I have been wanting to share this story for awhile,  and I feel now is the perfect time. So, below is my long journey with graphic, bloody details. So I am warning you in advanced, if you don't want to hear that kind of stuff, do not read. But I felt my story should be out there for anyone who is going through something similar. Also, I didn't want to label this as "My Story" because this isn't that, this is a teeny tiny part of who and what I am. A little journey in my long path I hope to take...

 

In 2005 I started having serious stomach issues that included bloody diarrhea, pain, constantly running to the bathroom, weakness, etc. After being hospitalized and being told I was moments away from cardiac arrest from serious blood loss, I was finally diagnosed with Crohn's disease. Crohn's is a form of Irritable Bowel Disease, it is an auto-immune disorder. The disease is treated with biologic medications that come with cancer warnings and when they stop working you are pretty much screwed. This happened to me and I had to resort to living on different doses of prednisone (steroids) for over three years. During this time I lived my life between the flare ups. In 2010 I became pregnant with my daughter and was finally in remission for 9 months. A month after I gave birth to her, I was flaring and back on steroids. For the next 3 years I was on steroids, trying different medications and even going back to ones that had failed in the past. In one situation, I had an allergic reaction and my throat closed up and I almost passed out. Lucky for me, I was getting the IV in an office where a nurse was standing by. My weight was down to 97 pounds and I didn't recognize myself anymore. I was a shell of a person. On the outside I seemed happy and positive but on the inside I was in horrible pain, constantly worrying about making it to the bathroom, not wanting to leave the house and dealing with horrible side effects of steroids, including a terrible moonface and very thin hair.

 

Finally, in September of 2013, I decided to see a doctor in NYC and see if I could finally get off of these harsh medications. After my new doctor ran many tests, it turned out I had Ulcerative Colitis, the sister disease of Crohn's. Not only had I been misdiagnosed for years, but I also had numerous pre cancer cells all over my colon. My doctor suggested surgery to have my entire colon removed. My small intestine would become what they call a "j-pouch" and act as my colon. The last thing I wanted was surgery, but with the thought of cancer growing inside of me, surgery would help me live a normal life. I would have normal bowel movements and the disease would not return so there would be no need for more surgery. So I decided to go for it.

 

On November 8, 2013 I had my extremely diseased colon removed. I had heard it would be a rough road ahead of me and that I would be in pain for weeks. I prepared for this the best I could. I woke up with my new friend, a stoma along with a bag. I had google the images so I had known what it would look like but there is nothing like seeing your intestines on the outside of your body. I was still too out of it to really look, so I wasn't too upset. The night I was out of surgery, I took two laps around the hospital floor. The nurses were amazed. I was told most don't make it to the door after this surgery. I had barely needed pain medication and did everything for myself in the hospital. The nurses loved me! They told me I was one of the easiest patients they had and I had a positive upbeat attitude. When the stoma nurse came to change my bag, I saw it. Eek! I swore I would never be able to look again, never mind change the bag or even empty it. A few days of watching the nurses empty the bag for me, I wanted to do it myself. I sucked it up and braved my way to the restroom. As horrible as it was, I knew it would help me get to my goal of being free of all my stomach issues. The nurses again were impressed that I was doing it on my own. Changing the appliance was a different story, there were so many steps! How would I ever do it? Especially since I wanted to do it without seeing the little pink intestines sticking out of my body. On a side note, the intestines are the only organ that can live outside your body! My stoma nurse gave me that tidbit and I felt kind of badass. :)

Walking the halls with my daughter. My legs were very bruised from steroids thining my skin. 

The views from my room were beautiful. The floor for stomach surgery is in the penthouse and are all brand new, private rooms. 

 

Once I was released from the hospital, I had a nurse come to show me how to change the bag. She had to show me about 5 times before I finally did it myself. I was pretty freaked out, but I did it. Once I got use to it, it actually wasn't that hard. Now I'm a pro.

A few days after being released from the hospital. Still had the moonface!

 

For 3 months I counted down until I could see my surgeon for my next surgery. I was dealing with leakage, mostly at night, that was horrible. Waking up like that is not fun!  Changing the bag at 2am led to a lot if sleepless, worried nights.

Before my second surgery. Going in with a positive attitude. Always.

 

In February we finally set the date, my next surgery was February 21st. The first surgery they removed my entire colon, this surgery they created the j-pouch from part of my small intestine (the large intestine is actually your colon, most think they are different organs). So lucky enough, my small intestine wasn't diseased so the j-pouch could easily be created. So we thought. My hips were extremely narrow (which explains my previous emergency c section with my daughter). So instead of a simple 3 hour laproscopic surgery, they had to cut my stomach and make the pouch fit in the tiny space they had which ended up taking 9 hours. When I woke up I was in the worst pain I had ever felt. The pain would continues for 2 days until they realized the epidural with the pain meds had moved and one side of my body was feeling EVERYTHING! Once that was fixed, the pain became more bearable. Now I was dealing with breathing issues from being under so long, a collapsed lung and the worry that the pouch wouldn't take and I would get very ill and have to have my surgeon reverse the whole thing. I was in the "step-down unit" for 7 days. When they finally moved me to my real room, the pain was better. Walking was horrible, when I stood up it felt like my insides fell out. But I did it and after walking a few times, it got easier and the pain got better. I was finally released after 10 days in the hospital. This surgery took a little longer to recover from. After the first surgery, I was doing P90x five weeks later. This time around I wasn't even lifting thing until 8 weeks. My surgeon had told me it could be 9 months before my last surgery.

The hardest part was not seeing my daughter for 7 days. She wasn't allowed in the step down unit. 

Hugs heal!

 

 

After a pouchoscopy showed I was healing really well, my surgeon said we could do one more exam in June and then schedule my final surgery for July. I could see the light at the end of the tunnel. During the whole process the hardest part was having a bag hanging off of my body. While sick with colitis I was always worrying about being close to a bathroom, now I was worried about my bag exploding in public. And it happened, several times. The whole thing was very trying on my spirit. I kept telling myself that this was temporary, I would look back one day and think of the whole experience as nothing, but at times it was so hard to see that. I still don't believe I was strong enough to go through it all. I would cry at times, mostly while taking a shower and cleaning my sheets in the middle of the night. I felt so alone. But loneliness was something I had felt for a long time due to colitis. It's very hard to feel like anyone can understand you who hasn't been there.  I have a few friends with IBD, but I have none that have a j-pouch or an ileostomy bag. Did I mentioned it made noises, on it's own, at the most quiet times? I definitely wasn't comfortable in quiet places. I didn't let it consume me though. I was feeling good, the bag was just a temporary annoyance.

 

The day had come when my j-pouch was to be tested to see it's quality. In other words, whether or not it would leak. The test consisted of a doctor doing an enema (while I was awake) and filling the j-pouch with a liquid then taking pictures, like an x-ray of it. I was very happy to hear that it was working great and there shouldn't be any issues with having my last surgery. As excited as I was, I needed to hear that from my surgeon before I could really jump for joy. A day later he called, and he said we could set the surgery up for the following Friday. That turned out to be Friday the 13th so I told him I would wait for the following week... The 20th.

Before surgery #3. No more moonface!

 

The morning of my surgery we woke up at 3 to be in NYC for 5:30 and a 7:30 surgery time. I went with my mother and husband and I think they were more nervous then I was. I was told I wouldn't need an epidural because the pain wouldn't be as bad at the previous surgeries. I was happy not to get a needle in my spine especially since the previous times didn't turn out so well. I came out of surgery singing "Because I'm Happy.."  I was finally bag free! After spending 10 hours in recovery waiting for a room, I finally got a room and I could sleep. The pain was bad, they gave me the usual suspects: Dilaudid and Morphine. Both I can't stand. I don't like anything that makes me feel like I'm not myself or like I have no control. I don't even drink! But I went with the flow and took whatever made the pain go away. I moved on to Vicodin and felt no pain relief. So much for the pain being less with the last surgery. I would say my first surgery was the least painful. My doctor even tells me I have a high tolerance for pain, so if something is painful to me, it really hurt!

 

Now I was dealing with a new issue, a hole in my stomach. That's right.. They don't stitch up the part of your body that the intestine was once sticking out of, they leave a deep hole (like a gun shot wound) to heal with gauze being stuffed in it and taped over it. The gauze burned and I cried every time they changed the dressing which was twice a day. Looking in the mirror now I saw a big chunk of my stomach missing. I looked like I belonged in a sci-fi movie.

So happy to be done with all my surgeries!

Pretty views from my room!

 

 

When I got home, the pain continued and now I needed to clean the hole myself and shower with the bandage off. Blech! After I was home for 10 days, I started to notice some blood from the hole. I went for a CT scan which showed nothing going on internally. As soon as I stepped off the train home from NYC blood started pouring out of the hole. I stopped it with pressure but once I stood up the blood would start coming again. I was staying at my parents at the time so we all rushed to the ER. The blood was non stop. I finally got on a stretcher and held my hand over it to stop the bleeding. I was covered in my own blood and in shock at what was happening to me. The doctors in the ER had no idea what to do. I was at the local hospital to my parents, not in NYC where I felt comfortable with my own doctors. They stuck me in a room and told me to just hold pressure over the hole. But that wasn't working anymore, now the blood was coming even with pressure and bleeding through thick towels and blankets. After hours of this going on (and scaring all the poor nurses), a doctor showed up and said they would explore the area and see why it was bleeding. Turned out there was a blood vessel sticking out! They could visually see it. They stitched it up, while I was awake and I felt it all. Even though they numbed it. I passed out a few times and just remember them suctioning all the blood out. My husband said they filled 2 buckets with blood. Needless to say, I needed 3 blood transfusions over the following week. I was held in ICU for 5 days and on the 4th day the blood started again. At this point I was pretty sure I was going to die. They couldn't figure out the problem and they wouldn't let me leave to get to NYC because of the risk of me bleeding again. I agreed with this choice since it was very risky and I had no idea when and if I would bleed out again. I finally agreed to go into the OR for the doctors to explore the area. They found another artery sticking out after they had to cut in a little more. They gave me more stitches. 8 long stitches to be exact and I stayed another two nights in the hospital. My surgeon and the doctors at the ER still aren't sure exactly why this happened to me. Could of been a cough I let out that I actually felt a pull. Who knows? I really don't care anymore. I am fixed and it's all behind me.

My husband was mentally exhausted and tired of seeing me in so much pain.

Having family and friends visit made all the difference.

 

 

Right now the hole is closed but still isn't even with the rest of my stomach. I'm guessing once it fully heals it will look more normal. I have lots of scars on my stomach now and I don't really mind. They remind me of how far I have come and how strong I am. I haven't been on any meds for IBD since before my first surgery, last November. Besides the pain following the surgeries, I haven't had any stomach issues. I believe this was the best decision I have ever made. I am extremely happy with life with a jpouch. I am totally normal now and feel so amazing!

 

Living for with pain from ibd for 8 years, surviving 3 hard surgeries and recovery has taught me a lot about myself. I've taken a few things away from my ordeal and this is what they are...

 

-Life is precious and so is health.. Don't ever take either of them for granted.

 

-Family is a beautiful thing. I couldn't of done any of this without my friends and family that helped me. Even the littlest things were huge for me. I appreciate everyone that sent love and prayers from a far too!

 

-I am stronger then I ever could of imagined. I am so proud of myself and my body. I am proud to call myself a survivor. My body is kicking ass now, I'm working out, I have tons of energy, I have an actual life! I never could of imagined this years ago. It feels amazing!

 

-Having a bag attached to my body for 7 months taught me to never judge a person. You have no idea what someone could be going through or dealing with. Be kind to everyone. 

 

 

I hope you all enjoyed this very personal account. So much love and health to you all! XO

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