Take another walk

by on Monday, October 10, 2011 0:23
This entry is filed under: Coping/Support

Hey guys, it’s been a while, and I thought I would update everyone one what has been going on since my last post back in September of

We'er getting married!

last year. At that point I had, had one more surgery in an attempt to fix a persistent leak just below my jpouch. I waited about six months before going back to the hospital for another pouch-o-gram to find out that the leak was finally gone. I scheduled my take down for May 16!
In those six months I feel like my life was moving at the speed of light. In January, Mike and I got engaged, I started back to college, I tried out for the volleyball team, ( and made it), and I was working every chance I got. I was trying to keep myself so busy that the time would seem to go by faster. It worked, it went so fast it seemed like I blinked and May was here. Spring volleyball was over and I finished the semester with a 4.0!!!!
Everything went as good as could be expected with the take down surgery, fast, clean, no problems, ect. I woke up and the bag was freaking gone!!!! I felt amazing , I felt like I was getting my my life back. I had made all kinds of plans, and promises to Mike that the worst would be behind us and we were finally done with this huge mess. We were going to be on easy street, living the life of our dreams.
I Spent only a few days in the hospital and was sent home in under a week. Of course if you have read my other posts you know that it is never that simple or easy for me. Only one day after coming home, I had to call an ambulance to come get me. I was in horrible pain and I couldn’t get out of bed. I went back to Duke and ended up staying for almost another week. The pain I was having was chalked up to some sleepy guts and I was sent home once I was feeling better. After a few days I flew back home to New York with my mom again to do the rest of my recovery there.
I’m not going to lie, recovery was rough! I was in the bathroom ALOT!!!! I didn’t care that I was running to the bathroom all the time, I was just so happy to be using the bathroom like a “normal” person! Now I had some cramping and some other minor pains but I didn’t worry to much, my surgeon told me that things would be tough for the first few weeks, So I kept pushing on.
Now I think that with my tract record you all know that it couldn’t have been this simple for me. By the first week of June I started having some more serious issues. I started having horrible cramps and I was running, literally, to the bathroom every five mins. The cramps continued to get worse and worse, and I was starting to feel terrible. With only a few days until my scheduled flight back down to North Carolina and Mike my mom rushed me to the small ER in the next town over. There I had all the tests done and they thought I had a blockage. They put an NG tube up my nose and into my stomach (loved that) and they had a transport take me back to the hospital in Eire, PA where I was sent for the blockage I had two years ago.
Once I got to that hospital the surgeon who helped me last time came into see me. He wanted to wait before he did anything to crazy, so, we waited a few hours and once he realized that things weren’t getting any better and the pain was only getting worse he rushed me into surgery. The only problem with that was he wasn’t going to able to do the surgery. This general surgeon who I had never seen before showed up. When I first met him I liked him. He seemed really confident and experienced with the situation that I had going on. So into surgery I went.
Now after the surgery I was completely out of it for the next 10 to 15 days, so I only know the rest of this because my mom filled me in. Once the surgeon got inside he found that it wasn’t a blockage but in fact a leak. I had been leaking for who knows how long and I had gross contamination in my abdominal cavity. He fixed the leak and cleaned out the contamination and said that everything looked alright but that I wasn’t out of the woods. During the surgery he ended up having to give me a 6 inch midline incision ( my biggest yet) and (with my crap luck) the ostomy back. Now, almost everyone knows that intestinal leaks mean infections and, I ended up with several of them. I was placed on a few different antibiotics and a week went by, during this time I only continued to get worse. They were trying everything from more medication to blood transfusions. My mom said that I had tubes coming from every where. There was about six machines on my IV poll and there were several IVs hooked to each arm. I was completely out of it and didn’t have a clue what was really happening to me. After about a week with no improvement they brought me back into surgery thinking that I was still contaminated. The surgeon cleaned me out again and stapled me back up. Now as I was right in the thick of things Mike and his parents flew to NY to see me for a weekend, thinking i would be better than i was. I only remember the first moment Mike walked into my room. I instantly fell apart. Shorty after they got there a horrible pain started in my lower back. They took me down to get a CAT scan. Once the results came in, we found out that I not only had one kidney stone but several in each kidney. The rest of that weekend with mike and his family was a blur. A few days later my white blood cell count was still up and even though the kidney stone had calmed down, I was still seriously sick. The doctors started poking around on my stomach and come to find out I had a serious infection in the big midline incision. Once they found it, they opened it up and started giving me the right antibiotics to treat it. In a matter of days I began to do better.

I know that I’m long winded but I need to take you back and tell you about the surgeon who fixed the leak. The only thing he can get credit for was saving my life. Yes that was the most important thing but over all he didn’t really have a clue about what he was doing. After the second surgery, when I was back in reality he came to talk with us about what we were looking at. His whole demeanor had changed. He changed the whole story about where the leak was. He became fidgety, and he wasn’t confident anymore. He couldn’t even look me in the eye. I started to get worried at this point. Later, after talking to my rock star surgeon back at duke I found out that he only spoke to her one time and he had no clue about the jpouch. It turns out that he didn’t know what he was looking at. The worst part is that my surgeon at Duke has no clue what he did to me other than save me life. She couldn’t make scene of anything he said to her over the phone or anything in the surgical notes. Now like I mentioned before, this guy gave me the ostomy back he placed it right back where the old one was. This created a huge problem, the stoma and the open midline incision were only centimeters apart, getting a seal on the bag was just about out of the question. There were days where I would have to change the bag every couple of hours. It was horrible. While I was in the hospital even the two ostomy and wound care nurses couldn’t figure it out. Before they finally sent me home we decided that a wound vac may fix the problem .They were hoping that the vac would allow me to seal the bag while keeping the stool out of the incision. It took for ever to get the paper work done and the insurance company to approve the wound vac. After a whole day of waiting it came, and they put it on. It seemed like it was going to be my saving grace. Well it would have been if I hadn’t waited for it all day and ended up with a broken one. I was still able to go home but I had to track down the company and have them send me a new machine. It finally came the evening of the next day. Now that I had a working vac and it was doing what it was supposed to I figured out fast that this in fact was not going to work for me. It was incredibly painful and difficult to change. Some days I had up to three home care nurses at my house at one time trying to figure it out. I lasted only about two weeks with it. During those two weeks I wasn’t eating and I was hardly drinking anything. All of my waking hours were spent in horrible pain and dealing with the bag/ wound issues, not to mention I was incredibly depressed. Most days I wanted to give up, crawl into that dark whole and stay there. I was speeding down hill both mentally and physically almost at warp speed. It got to the point where I was so weak, I couldn’t hardly walk let alone sit up on the couch. As much as At that point, I would have just rather sat there and withered away my mom forced me to go back to the hospital. Once i got there they said I was severely dehydrated and had extreme malnutrition. It was got bad it got to the point where my other healthy organs began to shut down. They sent me back to the hospital in Erie where they took just over a week to get me back on tract. Lots of fluids and slowly introducing food into my diet.

Now while all of this was going on I thought that I was going to have to give up everything at home, school this semester, volleyball, and work. I didn’t know what I was going to do. I had told my coach I wouldn’t be able to be on the team and that I didn’t think I would even be able to go to school this semester. By this time it was nearing july and It didn’t see like I would be healthy enough for any of the things I loved to do. The only thing I could do was cry, and I did that a lot.I was absolutely devastated. I know that my mom felt so helpless, she couldn’t do anything to make me feel better. She was always the one person who could help pick me up and I was lost to her, to everyone, but mostly myself.
At some point while I was laying in that hospital I found Sara again. I found the strength I needed and I decided again, to stand up and win this fight. Some where in my strength and determination I found the drive I needed. I decided I was absolutely not going to give up not even one more thing because of my medical issues no matter how sever they were or they got. I was going back to NC, back to my life with Mike, back to school and back to the volleyball team!

Right after i got out of the hospital the last time

After I finally recovered enough to head back home with my mom, we left the hospital. I was still struggling emotionally with all the changes that had happened. It was almost like I was morning the loss of something. I could see myself passing through the stages of grief which was incredibly odd. The doctors gave me pills to help me deal with things and they helped only a tiny bit.
I bought another plane ticket back to NC. The day before I was to leave, I woke up with a partial blockage and my mom had to yet again take me back to the hospital. They wanted to send me directly back to Eire but i asked that they hold off. I did not want to go back there! It turned out that waiting was the best think I could have done, the blockage cleared and I was able to walk myself put of the ER!
One week later I finally made it back to NC. A few days after I got home Mike and I went to see my surgeon at Duke. There I found out that

The volleyball team

the surgeon up in Erie didn’t really know what was going on when he opened me up and my surgeon is lost as far as what he did to me. Other than that she thought I was doing incredibly well with all things considered. We talked about volleyball and settled that I could play with some restrictions. At this point I was still having some serious problems but I felt like there was still some hope. I felt like i wasn’t going to lose everything again. I couldn’t have any thing done to change the situation any time soon so I figured going back to school would be the best thing for me, and going back to school would let me play volleyball. So with only being out of the hospital for two weeks I went to our first practice! Now I’m not going to lie, coming back after everything I had gone through was one of the hardest things I’v done. It was hard for a lot of reasons but the two that stick out in my mind now were how incredibly weak I was and having the restrictions. My body just didn’t do what I wanted it to. We are three months into the season and it’s still hard everyday but the positives out weigh the negatives by enormous amounts. Today, I am stronger than I would have been if I hadn’t played. Playing pushed my body to come back faster.
Now, my last surgery was around the middle of June as of right now I still have an open mid dine incision. Because of this my bags don’t seal right and I am having to change the bag sometimes up to three times a day. On top of that for some reason my out put is so watery and so fast. When I eat something it takes 30 minutes to an hour for it to come out in the bag. Its horrible! My skin is extremely raw and sore. I have seen several wound care and ostomy specialists and no one can come up with a better solution. I’m just not sure what to do.
On top of everything that is going on, my teeth have become incredibly week. I am breaking a tooth at least once a week, they are literally falling apart. I recently went to the dentist and in the next month they have to pull out 5 of my back teeth. They want to do this all at the same time to save me pain and to get it over with. I was told that to fix the damage that has occurred it’s going to cost in the realm of 18,0000 dollars. I don’t even have 1% of that. I have dental insurance but it doesn’t cover hardly anything. Im at the point now that eating is becoming hazardous to my health. I can’t chew anything right now and I am terrified to eat. I have been to several dentist and I have been unable to find one with enough commission to help. I can’t afford the help I need and the help I need won’t come without money. I just don’t know what to do anymore. So while everything on the outside seems to the heading in the right direction my body just can’t seem to get it right.

I really want to thank my family for all the support they have given me through all of this. I would not have made it without my mom! She is the most amazing person I know and will ever know! There aren’t enough great words to say about Mike! I am by far the luckiest lady in the world to be marrying such an awesome guy!  My Dad spent so many hours at the hospital with me, watching movies and just holding my hand! I can’t express how grateful I am to have Mikes family in my life. They are so supportive and helpful. I’m so glad they were able to come visit! My wolf pack girls, we can get through anything together! I love you all! Last but never least my best friend, my wife,  Michelle! I

My wife and I!

could not ask for a better soul mate! You will never know how much you really helped me though all of this. I am a better, stronger person because of you! I love you!

The Wolf Pack

I know that this too shall pass and some day all of this will be behind me. So I’m going to keep doing what I do best and keep on going. I know that there is a light at the end of this tunnel and I’m going to find it! Besides, I have a freaking wedding to plan!!!!!!!!!

Thanks for reading guys, I hope that your all doing well and staying positive!!! You are all such a great support team!!!!

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10 Responses to “Take another walk”

  1. avatar

    Brevin says:

    October 10th, 2011 at 2:43 pm



  2. avatar

    Amy says:

    October 11th, 2011 at 8:54 am

    Hello Sara, I just finished reading all of your posts,and found them very helpful.Thanks for sharing your life with all of us.Iam actually doing research on this subject for my husband who was diagnosed with UC 5 years ago and just recently had his colon removed resulting in a temperary ostomy.We went to his Dr. yesterday and he said that he is shooting for January to do his take down surgery.I was very concerned to see that the one surgen who didnt really know what he was doin was located in Erie,Pa because that is where my husbands surgen is from,and he will be the one to do the take down surgery.I was interested to see if it was the same surgen?? I dont really want to piss anyone off or distroy anyones practice, but this is my husbands life we are talking about ,and I dont take that lightly.He is only 32 years old and has been through alot.I would really appriciate it if you could email me with some info….amysee31@yahoo.com. Thanks so much.You sound like you have struggled so much,and Iam so glad that your life is getting back to normal.God bless you,


  3. avatar

    Sara says:

    October 11th, 2011 at 7:45 pm

    I emailed you the info!


  4. avatar

    Jeremy says:

    October 16th, 2011 at 12:31 pm

    To Sara: Great story. I had some of the same complications and went through the same type of torment for over six mths with my first j-pouch attempt. I’m working with my original surgeon who is very well reputed at Ochsners in New Orleans. He’s the head surgeon there. I’m looking at reconnecting again after five years of having a temp to let everything heal. Your story sounds like it’s worth it in the end. Thanks for sharing your experience.

    To Amy: Check your surgeon out. It would be worth going to a great surgeon (Cleveland Clinic) for this operation. It’s a very delicate procedure.


  5. avatar

    Michelle G says:

    November 15th, 2011 at 7:53 pm

    Hi… Ive been searching for answers.. Im 22 now and had the Jpouch surgery done at Mayo clinic when I was 18… Like you I had so many complications and was so disappointed because I was told this surgery would be the answer to all my problems…. But yet created numerous other complications… It is helpful to see someone young like I am who has had the surgery and complications and come out strong and healthy… I am now trying to find a good gastro in central flordia and it seems impossible… Here hoping! Thank you!


  6. avatar

    j says:

    January 30th, 2012 at 7:21 am

    avoid sugar totally and that solves tooth related problems and infections/ itches related around the pouch.
    My experience.


  7. avatar

    John says:

    October 12th, 2012 at 9:14 am


    I was just wondering how you are doing these days, and what the name of your rock star surgeon at Duke is?


  8. avatar

    lisa says:

    January 4th, 2013 at 10:27 pm

    Your story shows me how fortunate I have been, despite a liver transplant 9 years post J pouch surgery and now CKD facing a kidney transplant. You survived a horrible ordeal. You are a rock star!


  9. avatar

    Amy Green says:

    February 13th, 2013 at 9:11 pm

    Hey girl :))
    Just read your blog, I’m 23 i live in Atlanta and have done the whole UC >totalcolectomey > (for 2 yrs) an illeostomy >j pouch thing to. :(( currently I have not had an ostomy for 2&1/2 yrs!! But my j pouch is giving me trouble now :(( I can handle pouchitis compared to this hole I have in my pouch now which is causing discharge as u prolly kno. It’s so scary and frustrating and I’ve been on Flagyl for 20 days. I hope you can contact me and hopefully we can help each other :)


  10. avatar

    Sharon Sokoloff Moran says:

    August 4th, 2014 at 9:40 am

    Sarah, I cried reading your blog. You are a strong incredible person. I just moved to NC and i am in need of the surgeon for my son at duke. Can you provide me with that, he was in duke for a week with dr mcgreal and on humira not working and tried it all. Thanks 


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