26 Year Old Male 1 day post Ileostomy. Diagnosed at age 24. Two long years, hoping the worst is behind me and my life is infront of me.
We’ll right now, nothing. I guess just pain from the surgery and a bag hanging from my stomach.
So I originally posted a story way back in April/May. At that time I was told by my doctor in two years we had exhausted all our medical options and the only option was phase 2 of a stem cell trial or surgery. The doctor told me surgery was unavoidable. Also at that time I had just been accepted to start my MBA program at a top 25 school… So what happened in between then?
Read more about the stem cell trial and decided it was too early and too risky for me to take. Told my doctor to give me some prednisione and allow me to try the SCD diet. She said ok but asked me to go ahead and at least put the surgery on the calendar just in case something happened, I wouldn’t have to wait to get on the surgery list. I thought it was fair compromise. I also took a month off between work and the start of school just to focus on myself and the diet. And it started to work, I started to see results. I was so proud of myself. It took some time and the blood started to decrease I was enjoying the food I was eating. I was grilling all the time. My stress level was going down. I started pounding VSL3 probiotics. I was never sure if it was the diet or the prednisone but I was hoping for the best…
Then school started, I thought I would be ok, I thought I would be able to handle it, but the first three weeks I couldn’t get a set schedule as with any start of the year, orientation, group meetings, extra curricular beginnings threw off any routine I had built and I might pack food for breakfast and lunch but found myself stuck at school until 9 at night and had to eat non SCD meals. Chicken soup broth was the easiest to take but it couldn’t carry me through the day. And because of that the flair up started to slowly build up. I could see it, and it picked up as the prednisone finished, it was getting bad I could tell. I was getting nauseous. Seeing more blood, I knew it was coming, but I knew week 3 of school was when everything was set in place there would be less fluctuations I just had to make it through the weekend. I went home Friday for a remicade infusion, I threw up that morning. I knew I just had to make it through the weekend, I bought some chicken breast, my mom had made me some stock, I was making SCD yogurt om Saturday it would be done by Monday morning, and I could get going again. I was right there, I just had to hold off. Got back to campus Friday afternoon spend the whole evening throwing up. Sat morning had chicken soup, threw it up. Had a banana threw it up. Had a glass of water threw it up. Sunday I didn’t even eat and was throwing up. My energy was low, I called my parents to tell them, I need to drop out of school and defer my enrollment to next year. I wasn’t doing anybody any favors by staying in. I was losing out on chances to make friends because I couldn’t go out and I can’t focus in class with no energy. I was hoping Monday morning the nausia would stop, but I spent the whole sun night throwing up into Monday morning. Finally I called my gastro in Chicago, she told me to go to the ER immediately to get fluid. They hooked up to an IV. And around 2 in the morning I was in an another ER truc k being transferred from Bloomington, IN to Chicago IL. So now its Tuesday morning in Chicago still throwing up, the docs did a flex sig and I looked pretty inflamed. I am still a whole month out from the scheduled surgery that I was hoping to cancel in the first place. My gastro wanted surgery asap because I was so sick. The gastro surgerons thought we should just put me on prednisone to stop by the vomiting, let the inflammation go down and do surgery in October. And that idea had crossed my mind… Maybe I could have done that, fully focused on the SCD and pulled out a miracle. But I think I panicked. All I could think of was the last two years. In the last two years I had completed my first half marathon, had dropped my weight from 200 to 175 by exercising and eating right. I had my life ahead of me and then it vanished. My weekends were spent curled up in a ball in a bed or on my sofa. Living in downtown Chicago I had no social life because I had to be a 15 sec sprint to t he restroom. I spent every dinner paranoid of what this food would do to me. I lost friends because I made so many excuses for not to hang out with them. I was a 26 year old male who had gone to the bathroom on himself because he was stuck in gridlock traffic. My self esteem was shot. I was missing out chances to meet people at school, to go out to social events. Missing out on chances to try food I loved. Ive spent hours crying not knowing where my life was going. And at that moment as I contemplated both plans whether to have surgery or not, I think I just gave up and said lets do surgery, I don’t know if I can handle it any longer. …
So three days later on Friday, Sept 14th at 7 in the morning, I was being cut up. I woke up in pain but I finally didn’t feel sick. The bag is an adjustment that will take some time to get used to. But as I sit here and type this I don’t know if I made the right decision. Of course its too late now. But what happens if I still can’t eat, what happens if I still have flair ups. How do I deal with pouchitis? To fix one problem, I added 100 more worries to myself and feel terrible about it. I keep hoping I’ll wake up and this will be just a dream. I honestly can’t make up my mind if I gave up, quit, lost, or just played the hand I was dealt.
Where I’d Like To Be in a Year:
I am praying this is the end of my UC.. So I have made a few lists.
Where I want to be in a year:
* Successful j pouch surgery
*working out again
*re training for a half marathon (CCFA rock n roll in Vegas preferably)
*Non online Colitis Crohn’s friends who know exactly what I am going through
*Able to eat without being scared
*Closer to my parents to thank them for everything they have done with me as I have probably distanced myself from them the more sick I got. As hard as this pain has been on me, I know its been 100x harder for them to watch me go through it and I wish I could give them those two years back of their lives that was stressful for them.
Things I am looking forward to:
* Unhealthy foods that I use to do as a treat meal when training for my half( chicken wings, pork tenderlon, ice cream, burgers, ball game hot dogs, pizza)
* Nutrious food that I had to avoid during SCD (chocolate milk, bread, I have a craving for a whole wheat sandwhich with carved turkey, slicked avocado, sliced tomato mustard and a glass of milk), Raw veggies.
Things I wish would happen:
* Public restrooms/restaurants should not lock bathrooms to non customers
* More people were aware of the symptoms of IBD
* Restaurants that had have an SCD menu
* Grocery stores with food market 100% SCD appropriate
* Fast Food Restaurants that were 100% SCD
* Clean public restrooms on the street, something like a quarter you walk in and they are spot less and you can go to the bathroom.
* A future cure…
Finally about the picture I have posted. I tried to highlight my weight flucations. I forgot there was one point in there I was really embarassed about my prednisone face that I deleted most of the pictures in that time period. But Nov 2009 is about 8 months before I was diagnosed. Aug 2012 is a month before I had surgery. I am really hoping and praying this is the end of the line for me and any complications are small and quickly treatable. And I can go back to running and being healthy, and my next post, will have the same exact picture, except after the suit picture, it will be me crossing the finish line at a CCFA half marathon. Fingers crossed
So since, I might be off medicine for a while, I just want to say, I know this post was mainly a self pity type article. And part of it was supposed to be. I was needed to get a lot of my chest. But I am thankful for a lot of things. I am thankful for my familys support and love. Everybody from cousins to aunts and uncles stepped up to help me at different points but I really couldn’t have made it this far without my parents support. Also, I want to give back. Unfortunatly, I haven’t found many people in Indianapolis who I can talk to and provide support and comfort. I am hoping after my MBA program I can be in a bigger city, where I can volunteer to help people in IBD. If this diesease does one positive thing is put things in perspective. I know what is important now and who is important and we should cherish every little thing we can. I still remember the taste of four could blueberries on my mouth after 3 or 4 days of the intro d iet. Or the first meal (while on prednisone) I was able to enjoy with my parents without running to the restroom. I can’t remember what I ate, but I remember being able to just sit with my parents. Its days like that I really need to work on cherishing the most.
written by Rohun
submitted in the colitis venting area