Not Sure If I Quit, Gave Up, Lost Or Just Played The Hand I Was Dealt

Introduction:

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.

Rohun after UC surgery

My Symptoms:

We’ll right now, nothing. I guess just pain from the surgery and a bag hanging from my stomach.

My Story:

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:
*Social life
*Dating
* 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…

Rohun after UC surgery

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

Colitis Medications:

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




surgery

15 Responses to Not Sure If I Quit, Gave Up, Lost Or Just Played The Hand I Was Dealt

  1. Adam
    Adam September 19, 2012 at 6:05 pm #

    Rohun,

    Thank you so much for sharing. You’re story is amazing, you’re amazing, and I’m sure your family is extremely proud of you as a person! And, I don’t think there’s a single person in the world who has been through the hells of colitis who can say you gave up, lost or anything remotely similar to those thoughts. You’re a true fighter, and now you’re moving forward. That’s the goal.

    I remember very well your original story a few months back (https://ihaveuc.com/just-hoping-for-the-best/) and you’ve come a long way since then. No need to double guess your decision making. Come on man, you’re a smart guy(crap, you got into MBA school), and you’ve got a TON of life waiting for you.

    I’m not positive, but I’d bet that in not too long, you’re gonna be so damn happy with your decision that you’ll be wondering what the heck you went so long with toughing it out with active symptoms.

    Best of luck to you with your recovery, and I sure hope to see you crossing the line in Vegas one year…maybe this december??? :)

    -Adam

  2. Jeanine September 19, 2012 at 6:24 pm #

    Hi,

    I had my surgery almost a year ago now. I remember at first being very scared and freaked out about this new thing attached to me. I had a few days of being sad – almost mourning the death of my old body. BUT, once I started coming around….and it took a while. I had an infection (spleen) and I had a blockage and I had diversion colitis in the remaining rectum..I felt wonderful. Even with all the bumps along the way, I still would not have it any other way. i hated the drugs. Nothing ever worked for me for any length of time. It was a rollercoaster. I look at my ostomy like I look at wearing contacts. It’s a part of me now. Once you accept it – so will everyone else. And you will. I never thought I would accept the ostomy or ever consider keeping it versus Jpouch. But now I wonder if I will ever go for the j pouch surgery. I too would like to get back to running but am waiting a little longer…or maybe start something new that’s easier on my joints after all the prednisone and I had joint pain that came along with the UC. I wish you all the luck and if you ever have any questions, feel free to drop me a line. I’d be happy to help. I was 31 when I had the surgery (married with a now 4 year old little girl). You made the right choice, you’ll see. God Bless. Jeanine (jeaninemaclean@hotmail.com)

  3. Dawn September 19, 2012 at 6:43 pm #

    Let me tell you something, my friend, I woke up from my colectomy amazed at how it felt to not feel sick. That was almost immediately followed by an overwhelming thought of, “what the hell did I do to myself?”. The second guessing is a real and legit thing. The deal is, we will never know and that is really hard to accept. I will never know if a few more months on Prednisone would have meant unreversable diabetes or high blood pressure (my numbers were going crazy toward the end!). I will never know if the next flare might have been the big one that would have forced me into an emergency surgery situation. I will also never know if Remicade might have bought me some time. Who knows, maybe a couple more years would have meant some scientist in a lab someplace could crack the IBD puzzle? It took time to accept all of these answers were things I would never have but, eventually those feelings lessened and became manageable. I learned how to care for my ostomy and manage my appliance and then I got about the business of being well and living life!

    I love hearing about your half marathons! I ran one two or three days before my step 1 surgery and ran another one (with my ileostomy….don’t let it stop you!) a couple of days before my j-pouch creation step 2 surgery. Definitely keep those goals in mind because you can do it once you are well enough!

    Be prepared though…..a lot of the same awful doubt and other feelings slapped me down pretty hard after takedown, too. I was not expecting this! Takedown was supposed to be the end of the road…..mission accomplished. It was really just the beginning of something different as I made the adjustments to life with my j-pouch. In the early days, there is a lot of sitting on the toilet and it is traumatic….kind of sucks you right back to UC days. I remember feeling very depressed and wondering why I had gotten rid of my ileo. Things improved for me really quickly though and now I couldn’t be in a better place (unless it was to never have had UC in the first place but we know how that is). I am very busy, active, healthy, and happy. Yes, things could still go wrong but I don’t dwell on that. I just get out there and enjoy the life I have and try to take as good as care of my body as possible. Those are the things within my control so I focus on them.

    Don’t discount your feelings….they are very real and you have to let yourself experience and process them. There will be grief, regret, doubt, frustration and even out and out rage sometimes…..but those feelings don’t last forever and life moves along if you allow it.

    My best to you. You still have a lot of road to travel. It will not be easy but it should be very much worth it.

  4. Blake September 19, 2012 at 7:02 pm #

    Hey Rohun. I know this whole crapping in a bag thing is new to you, but I think you’re going to find life a lot easier with it. No need to second guess yourself. Obviously, if you had surgery, things were’nt going well in the first place. Now things are going to turn around for you. You may have some bumps in the road, we all do, but I’m pretty sure you’ll be able to look back on it and say it was worth it and that you are much better off than you were with UC. I was really happy with my ostomy bag from the beginning of it. Didn’t have to run to the bathroom anymore, could eat whatever, never even had a stomach ache. Now I’m one month into my J Pouch. I have to say I liked the bag a little bit more than the pouch so far, but my J Pouch is working pretty good. It just takes more time to work out the kinks. Rest up bud, you’ll be back to working out in no time!

  5. Livia September 19, 2012 at 7:12 pm #

    Hey Rohun,
    I think that what you are feeling now is very normal and part of the process. You certainly did’nt loose, you won :) It takes a lot of courage to decide to go trough with the surgery, I actually wish I had this courage! Don’t worry about everything that could go wrong, most people are VERY happy with their surgery and only wish they had done it sooner.

  6. Anna Miller September 19, 2012 at 7:38 pm #

    Hi Rohun,
    I’m 4 weeks and 2 days out of surgery. Like you I’ve questioned if I have done the right thing.. I really hoped that I could cancel the scheduled surgery and manage to live my life with an intact colon.

    However my body disagreed with my plan and decided to flare up badly. I couldn’t go out.. I became a prisoner in my own home, I’d only got married a couple of months before and my husband was at his wits end with worry about me. It wasn’t the best way to start married life together that’s for sure.

    Since having the surgery and meeting my stoma (Stimpy) I’ve had a few days where I’ve thought “I could have coped with the UC and once the flare had been dealt with I could get back to living again” but really I’m kidding myself. My colon would have disintegrated sooner rather than later.

    Having Stimpy isn’t so bad, the bags are a bit pesky at times but manageable and as I get used to them it’ll become second nature and lets face it there are plenty of people who are worse off than we are.. that’s how I look at it. I think about my place in the world and look at other people and it humbles me and then everything is alright. (for a while anyways)

    The way you are feeling is perfectly normal and part of the grieving process.. I have more days of that ahead of me too.. you certainly didn’t quit.. you continued the fight and dealt a good hand by decideing to go with the surgery.. Our lives will get better, You’ll be able to finish school and I’ll be able to finish my silversmithing degree and have a family.

    All will be well, you did the right thing Rohun! =D

  7. Laura September 19, 2012 at 8:12 pm #

    Rohun,
    I can relate to you about how traumatic colitis can be, especially as a young adult (I am 24). I also had to drop out of school this year (accounting masters), because my flare up, which had been going on for over a year, had gotten so bad. I was severely anemic, could not keep down any food, and spent most of my days curled around the toilet sobbing because the pain was so intense. This summer, after trying Remicade, Cyclosporine, and spending 40 days in the hospital, my GI doctor referred me to a surgeon. Within 3 days of meeting the surgeon, I was being cut open and had my colon removed. I did not have much choice, my surgery was done on an emergency basis. I currently have the bag, and I am not a huge fan. The only thing that keeps me from losing my mind is knowing that it is temporary. If I was married or older, I can see how the bag would not be an issue, but I can’t imagine dating with this thing. I just don’t like it. I am having my surgery done in three stages, so I am about three weeks away from my second surgery (hopefully). I understand all of your fears, I have the same ones. I worry a lot about what the second and third surgeries might bring, but nothing can be worse than having bloody diarrhea 30 times a day. Hope you are feeling better.

  8. gillian jule September 20, 2012 at 5:58 am #

    I am 29 and got diagnosed about a year and a half ago with UC. right after the birth of my daughter. I’ve been in a constant flare up since then and nothing has worked. currently on Remicade every 4 weeks at the highest dose but thta’s not even doing anything now. going to meet with the surgeon on the 8th and am seriously leaning toward the 3 step jpouch surgery. I am so tired of constantly being sick, had to stop working, can barely care for my own child without family coming over to help as i spend most of my day in the bathroom. I’ve talked to some friends who have had the surgery and that has helped ease my mind about it a little but I could definatly use some advise, support, suggestions about dealing with it and what to expect. would love to make some contacts on here to relate to.

    • Jeanine September 20, 2012 at 9:24 am #

      Gillian I was also diagnosed when my daughter was about a year and a half. I spent two years being sick. Always in bed or in the bathroom. She didn’t know who I really was. When I had surgery when she was 3.5 she got to know the real me. Finally. I never thought I would keep the ostomy long. Now I don’t know if I’ll have the jpouch surgery. Because I am healthy and feel like me. I don’t know if I am willing to go down the road of having symtoms again that seem like UC with the pouch…recovery, surgery. Maybe someday I will but a year after surgery, I am just about back to full time work. I had a few complications – diversion colitis – in remission with Salofalk suppositories. An abscess on my spleen – treated with antibiotics for a month. And a blockage – which is parr for the course I hear. But none of those things were anything compared to the UC. The dispair of not know when it was going to end. I look at the surgery in a positive light. I have a very positive outcome. I wish you all the best. And if I can help in any way, feel free to contact me (jeaninemaclean@hotmail.com). Take care.

  9. shelly September 20, 2012 at 1:38 pm #

    Hi Rohun

    You’ve been through so much and like others have said, everything you are experiencing is normal. Perhaps it might help to speak to someone who specializes in medical trauma. I have had family members with serious medical issues seek help through such specialists and it has helped them immensely.
    As for the SCD, yes it does work for many but not for all by any means. Neither do probiotics, supplements, meds, fecal transplants, ldn etc. You perhaps could have waited longer trying different things but is i most likely that you would have had to have surgery anyway. Some people just have very severe refractory disease so please try not to think of “what if” or compare yourselves to others.
    Please do not think of yourself as a failure who have up. Surgery is a very difficult decision and I think you have to be very strong to go ahead with it. I have to say, I know many people who have gone ahead with colectomy ranging in ages from 1 to their 60s and really no one regrets it and many are thrilled with the outcome after the first year or two. I’m sure you will be too.
    Please keep us posted.
    Sherry.

  10. Sandy September 21, 2012 at 8:23 am #

    Hello Rohun,

    One winter day in the 1970s I had to choose between death and an ileostomy. (The jpouch had not been “invented” yet.) I chose the ileostomy. I was completely cured of uc.

    Sure it’s a nuisance to empty the appliance/bag 8 or so times a day and change it every 4th morning, but, hey, I am alive.

    You have already suffered more than I ever did. You are in a geat deal of physical and emotional pain right now. The physical pain will soon go away and you will be left with your life and your future. Then go for it, get that MBA.

  11. Bev September 21, 2012 at 2:55 pm #

    Rohun…

    You know that things always get better…always. They always improve.

    You’ll see. Just hang on in there.

    Your life is just beginning…again!!

    Cheers:)

  12. Randy miller November 22, 2012 at 11:48 am #

    Rohun,

    I just had surgery 8 days ago, and life is already better… 16 days in the hospital, and remicade. I had no choice.
    But each day is 10% better.. You are in my prayers. Get with a good et nurse, it helps greatly! I don’t know
    What I would do without Katie! You can do this… We are all here for you!

    I also want to thank all of you here, I have read all your post. And it gave me hope, when i needed it.So thank you again!
    Happy thanksgiving to all of you!!!!!!

    • gillian November 22, 2012 at 4:14 pm #

      hey, i see you just had the surgery recently. are you going for the whole jpouch surgery or just sticking with the bag? if you are going for the eventual jpouch, check on line for all different ostomy supply companies and contact all of them to get as many free samples as you can, Convatec, Coloplast, and Hollister all send you samples with nice little travel bag kits, mirrors, scissors, and stuff. and the supplies can get pricy so load up on the free samples, all the places want your buisness so they are happy so send you free start up stuff!
      I had my surgery in the beginning of Oct and am prob going for round 2 of 3 in mid-Jan. already sooooo sooo much better. it was the first thanksgiving in a long time that i could actually eat and enjoy it worry free! such an amazing feeling that most people take for granted.
      hope you are feeling great and feel free to post back :)

  13. Jimmie August 19, 2013 at 4:09 am #

    I have had UC for almost 30 years.Hasn’t been as bad as alot of peoples.When I stay on Meds.
    I have a yearly colonostomy.last year Dr. found dysplasia,and still there on repeat one.
    So he is sending me to see a surgeon before turns to cancer.Anyway I have question to those who have had surgery.Everyone says they feel better right away.After you heal up is all the bloating
    and gas relieved?thats what really has been bothering me latey.And do you feel empty?like your missing something?I don’t know why I feel so sad about losing my colon.you know I didn’t get
    upset about having to have my gall bladder out.You know its making me sick take it out of there
    who cares.but I really feel grief and like its a big deal with the colon I guess because of the
    ilostomy and having to deal with that seems like make you feel abnormal.Just wondering.Thanks to anyone who wants to answer.

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