How Did I Get Here?

Damian K fMeet Damian:

My name is Damian, I just recently turned 40 and reside in Los Angeles, California. I used to be an actor/model as well as weightlifter and skydiver. I’ve always had a loving relationship with nature and animals and being in the wilderness is my true passion.

Some more background info:

I’ve died or almost died 3 times in my 40 year existence. Back in 2004, I had an accidental cardiac arrest by combing prescriptions that weren’t supposed to be combined (I didn’t know as they were both filled at the same time at the same pharmacy). In October of 2008, during an icy hike up Mount Whitney (the tallest mountain in the contiguous United States), I nearly slipped of the edge at 14,000 feet near the top. I was only able to hang on at the last second, while dangling over the ledge, and pulled myself back up to safety.

UC Symptoms:

I used to have very severe UC, with daily internal/rectal bleeding and major weight loss from not being able to eat. Suffered severe side-effects from many of the treatments and medications.

Damian’s Story:

Hi,

My name is Damian and after 3 years of battling a very severe form of Ulcerative Colitis, I resorted to having my entire colon removed in late February of this year. The idea is that with two more surgeries, I’ll have a functional J-Pouch (reversal surgery) and no longer need the ileostomy pouch. The unfortunate fact though, is that I am seriously considering taking my life. I see no value in continuing to have my head pushed back down under the water of life every time I try to come up for air. My mother was murdered when I was 3 (I was the one that found her body), my grandmother – who was my legal guardian, died a slow and horrible death from cancer when I was 16. I’ve never met my father as he ran off when I was just a baby. I’m in this world all by myself without the aid of family or loved ones. Yes I have friends, but that’s not the same as having blood relatives that would take you in if needed or help out in times of great duress. You see I develop ed a very severe form of ulcerative colitis 3 years ago. I’ve been in and out of the hospital since. Often times the internal bleeding was so bad that my hemoglobin would plummet to 4 (it should be 14-17 for my age and height). I would often times need blood transfusions and horrible medications like prednisone (it needs no introduction to those of you taking it) to get well enough for discharge and return to work. I tried every treatment available; Remicade, Humira, Azathioprine, Entyvio, etc. etc. It was always the same. Success for a month or two then the UC would come back with a vengeance. In a 7 month period I had to have 10 blood transfusions. There was no doubt I would eventually die from the disease, whether from severe anemia, eventual cancer, or the ridiculous weight loss and malnutrition. I used to be an avid weight lifter and weighed 220 lbs just 2 1/2 years ago. At my recent worse I was down to 145 because eating was too painful. Especially going to the ba throom 4 hours later. I used to love sky-diving, golfing, surfing, jogging, and especially hiking and being in nature. Because of the bleeding and constant need to go to the bathroom, I had resorted to hiking in evening hours once it had gotten dark outside. That way, I could relieve myself almost anywhere and not be seen. I always felt bad for doing that to nature (I always carried out any garbage), but it was all I could do to still try and hike. In a sick sort of way, I guess I always hoped I’d encounter a rabid mountain lion. Usually it was the mountains overlooking downtown Los Angeles. It would be 11pm at night, and I’d be sitting at the top, having just expelled a pile of bloody diarrhea, taken Norco or Dilaudid for the major abdominal pain, and I would be listening to music while watching the city and freeway lights down below. It was a lonely painful existence under the pale moon, but one that I still had some semblance of control over-that is, to know th at one day, probably sooner than later, I’d die from the anemia or the illness itself. I was ok with that though. I’m 40yrs old and was ready and willing to fade off into the celestial sunset. There was something stoic and peaceful about that.

This past February things reached a head and once again I ended up in the hospital. This time was exceptionally bad and the doctors and surgeons really pushed for me to have a colectomy and eventual J-Pouch surgery. Against my better judgment (I was dosed up on morphine and alone, no family at my side to discuss anything with) I relented and had my entire colon removed. It’s now 3 months later and I’m slipping further and further down into severe depression. I’ve read most of the horror stories online about complications from J-Pouch surgery and I hate, hate, HATE, having this ileostomy pouch on my side. I wouldn’t wish this upon anyone. I’m so repulsed by the act if eating and digesting food that I hardly eat. I still weigh around 150-160 as a result. My surgeon is planning to do the 2nd surgery in late July with the final takedown some time in September/October. Is there any hope for me to have successful J-Pouch surgery? All I know is that I can’t continue to live with a sack glued to my side. I know others have tolerated and lived with it for a long time and I marvel at their strength and perseverance, but my bullshit tolerance is almost out. Life has not been fun or enjoyable for me and there’s no reason for me to think it will improve. After all, I just celebrated my 40th birthday by having 7-8 feet of my entrails removed:(

The doctors and friends keep telling me that I needed the surgery to save my life, but it seems of little comfort. What good is living when quality of life sucks? I still try to hike and still have to go at night in the dark like a revenant because I have to empty the “bag” usually at least twice. I still don’t go out to movies or anywhere else because I know my sack will make gross sounds, smell bad (yes people can smell ostomys unlike what you always hear), or need to be emptied many times. How has my life improved? I’m still dealing with a similar situation only now I’m dependent on an external apparatus. I am currently on short-term disability but eventually my job will probably let me go (FMLA has just ran out). I can’t afford Cobra Insurance for very long while on disability and yet I have 2 more major surgeries to go, and that’s if there are no complications to the pouch. I have no one to stay with or help me if problems arise, so things are looking really bleak for me. I don’t see much hope other than to just end a life’s worth of pain and hurt. If I had to do it all over again I would’ve NEVER had the surgery. Yes I would’ve eventually died, but at least I had control over that outcome. Now I have no control and very little means to live. For anyone considering a colectomy, I would urge them not to not just rush into it thinking about immediate relief from the illness, but to also weigh their needs and potential problems over the next couple years after surgery. If a person makes a decision to have their life hinge on needing a piece of plastic constantly glued to their stomach, they’ve already lost the quality of their life in my opinion. Yes some make due and survive. Some even finds ways to smile and push on. It just depends on what they are willing to endure and tolerate. Some would survive and live years longer in an iron lung, or in a protective bubble, or confined to a bed/chair. I am not one of those people. I have no fear of dying and I believe that when the time comes, it’s time to say goodbye with your integrity still intact. We preach about freedom of choice when it comes to women’s bodies and abortion. We preach how inhumane it is to make our pets suffer through illnesses and injuries when they should be put to rest. Would you allow your loved cat or dog to continue struggling with life while having a feces-bag glued to them? I don’t think anyone would. So while I pray that the J-Pouch surgery will be a success story, I’m preparing mentally and emotionally for it to go the way everything in my life has…therefore I see no light at the end of the tunnel. Suicide seems to be the only release from this. I’ve purchased a couple books to help me; “Final Exit” and “The Peaceful Pill Handbook”. I want to reiterate that while I don’t fear death, I don’t want to die. I want to live and enjoy life. But what hope is there in all this? I’m sorry for being long winded and melodramatic, but I felt the need to reach out to those who are suffering and haven’t yet had their colons removed. I pray the surgery will be successful and I can still have a normal life. But that hope is fading and it really feels like I’m hanging on to something that’s just an illusion…

Medications..Diets…Supplements Tried:

I tried every supplement, diet, medication, treatment (even a form of chemo-therapy) and alas the only thing that worked for me was not eating…which can only be sustained for a short time.

written by Damian K

submitted in the colitis venting area




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56 Responses to How Did I Get Here?

  1. Paul Willoughby May 21, 2015 at 4:55 am #

    Damian,
    See the Jpouch operation through. I went through it and it is an ordeal but so worth it. I had my reversal surgery in January and things have been getting better and better – already doing things I would never do when I had UC. From reading your story, I see you’ve had things rough – but that just means you’re tough enough to see this through and get to the other side. Don’t give up.

    best wishes,
    Paul

  2. Melissa Daihl May 21, 2015 at 6:37 am #

    Please try to see this time in your life as a temporary issue that will soon be fixed by the surgeries. I lost my mother five years ago and my father pretty much abandoned his family of 30+ years after she died. I too feel like there is no one left to care about me, or take care of me, but your life is valuable. The despair colitis causes is evident–and you have so many who share your issues on this site. Please take comfort in these people, be open and get your story out there–everyone has so much insight to share. Things will get better for you, Damian

  3. Christine May 21, 2015 at 7:18 am #

    Things will get better. This I can promise you. The group on facebook is a great support system in mean time. Reach out to anyone on there.
    Lookung forward to hearing how you are glad you stayed with us and followed the procedure through!
    Dont give up..

  4. Tasha C
    Tasha May 21, 2015 at 7:35 am #

    Damian,
    I know everyone’s journey is different, however, there are many similarities between ours. I’m 30, struggled with severe UC for 4 years which progressively got worse despite any medication you could think of. I held off on surgery until it almost cost me my life. I have since had all three surgeries, completed with my j pouch created this past October. It took 1 year to complete them all.

    Throughout this whole ordeal I had extremely negative thoughts. I was often angry, depressed, emotional..etc..I will say I had a significant other during this time that helped me along the way but my my father had always been my go to, my everything. (I do have other family but there are “issues” if you will…) Before I had my first surgery, my father, who was struggling with demons of his own, took his own life, which hurt/still hurts more than any pain I ever had in my belly/ass. My point is, I know how dark this time in your life is, and with the person I loved most in the world taking this way out, I can’t say the thought didn’t cross my mind. But I assure you, having the jpouch will change your life!! I’m an active person also, hiking, running, boating, I love being outdoors and always “going” and this surgery has allowed me to enjoy an actual life again. Like someone previously commented, after your surgeries your past struggles will feel like a completely different life to you.

    In conclusion…(feel like I’ve written an essay).. Give the surgeries a chance… See them all through… Yes, having a bag full of feces protruding from your abdomen isn’t ideal… But it is temporary, as is the post-op pain… As was the hundreds of hours you spent hospitalized or getting transfusions…that part is over… Prepare yourself to have an awesome life once this is done.. You can back to doing the things you love and then some… Also, prepare yourself for extreme positivity, it can be nauseating at times! (Jokes)
    You will overcome this! You want to be able to look back and know you made the right decision. Life is good.. And will be amazing..just keep living!!

    • Eileen May 21, 2015 at 3:48 pm #

      Tasha, you are fantastic. Thank you for your positivity……I can’t talk to anyone about my uc which I have had for ten years

  5. Jeff May 21, 2015 at 7:38 am #

    Damian

    What a horrid disease we have! We all get it man just keep talking to people like us and see your surgeries through. Depression is part of our disease. Get some help from a professional. There is no shame in that. Take it one day at a time. You need to find that strength you had on top of that mountain. The will that you had to live. It is still in you. Something like that never leaves. God Bless

  6. Debbie May 21, 2015 at 11:20 am #

    Damian,
    Please hang in there! You will feel better soon! My cousin has lived a fulfilling life with a jpouch for over twenty years. My son is battling U.C. For the past 3 years and he is 24. He also battles depression. I am praying for you.

  7. Lucy May 21, 2015 at 2:07 pm #

    Dearest Damian,

    I wish I didn’t understand what you were talking about but I know it well. Just last night I had a break down and cried until my head felt like it would burst. I was diagnosed 4 years ago. The doctors never explained the hell UC would bring to my life. I wish they had prepared me. It wasn’t until after my diagnoses that I had my first flare-up with all of its incredible symptoms. I just layer in bed and wondered what I had done to deserve such misery. The pressure of having 3 kids and a boss calling every day was almost too much to bear. I pulled through. I had decided at the time of diagnoses that I would not take medication and I have yet to take any. I hired a health coach, changed my diet drastically and slowly regained my strength and my sanity. Two years later I had another flare-up after adding gluten back to my diet. It lasted 21/2 months. I lost close to 40 lbs and could barely walk. If it wasn’t for a friend who gave me marijuana to deal with the pain, I don’t know if I would have made it through. That’s the honest truth because I seriously thought of taking my life, just like you. Yesterday I had terrible abdominal pain and I thought I was on my way to another flare and I lost it. I told my husband that I would take my life but he reminded me that I had felt that way before and then it would pass. Damian, don’t give up. I don’t have an answer as to why we have this condition but there must be some crazy reason. I turned things around and went back to school and become a health coach and now I help others deal with illness and/or avoid it. I have found my purpose.I understand how lonely you must feel not having family around. I am grateful for my husband and my kids as they do help me.Please consider me your family. My cell number is 973 997-7398 and my email is redspot1971@gmail.com. I might not have the answers but I am a great listener. If you can’t make it out to nature then let in come to you. Surround yourself with pictures of beautiful things, listen to recordings of ocean waves, birds singing, the rain & thunder. I have done all of that and it truly helps. Call me whenever you need to or want to. We are not strangers and we already know we have tons of shit in common (stupid joke). Seriously, stay in the game.We never know what tomorrow will bring…it might be great, it might suck but either way stay in and find out. I am sending you my love and a tight hug.

  8. Mirza May 21, 2015 at 3:02 pm #

    Hello Damian,

    Please hang in there give surgeries a chance. I hope and pray you will feel better soon and you will be able to do all you have done in the past and more.

    Regards
    Mirza

  9. Tammy May 21, 2015 at 3:21 pm #

    Hi Damian, I can relate to your story. My husband left me suddenly in 2013 and because of the stress I developed UC. I was all alone and was put on prednisone at very high doses. I lost all my hair and was 95 lbs. After Four hospitalization and many blood transfusions I almost had the surgery. I felt like you did. Pain every day. Depressed every day. I had family but they were so stressed by the disease that it was an added burden in some ways. It was a horrible time and that word does not even come close to the devastation I experienced I hope you don’t find this in anyway preachy in any way, but my relationship with God is what. got me through. I went to many prayer meetings and started to improve. So I pray to my Heavenly Father for you. Dear Papa please help Damian. I don’t know why we have such a horrible disease, but I pray you help him and give him strength like you did me when I wanted to die also. Please help him and bring people in his life to help him. I pray his surgery goes well and you give him his life back. In Your name, Amen. (((((Damian))))))

  10. Bev May 21, 2015 at 4:27 pm #

    Damian…this is the first post that someone has written on here who has had ‘the’ surgery and is telling the hard truth about it. I never want to have the surgery, for a lot of the reasons that you have pointed out. Wow. All of the bad things that I have heard about what can happen really can happen.

    I completely understand why you feel the way that you do. Wow, man, you have been through it, haven’t you? I don’t know how I would feel or what I would do if I had the same things happen to me. Probably feel the same way that you do.

    People who have loved ones and / or family who give a shit about them are truly fortunate. What the hell is one supposed to do when one is alone?

    I guess what you have to do is actually change the way that YOU are thinking. There really is no other way. I don’t know how you will do that, but I sincerely hope that you can and will. It will likely be the most difficult thing that you will ever do, but you have to do it, Damian. You really do have to. The alternative isn’t that great.

    I hope the very best for you. You are actually helping a lot of people, telling all of this in such a truthful way. Good on you for that.

    I hope that you will go either through those surgeries…OR NOT. (Remember, that is an option. There are some people on this site, like Tom, who didn’t have any more surgeries…no j-pouch…he seems to be doing fine…right Tom)? Either way, I hope you are around to help other people in crappy situations. We need people like you, who aren’t afraid to tell the harsh truths. No bullshit!

    Cheers, and take care of yourself, because YOU can be there for YOU. Something good might be coming down the pipes for you some day, my friend,

  11. Tom
    Tom May 21, 2015 at 5:19 pm #

    For every 5 people who have problems with a jpouch there will be 50 others doing just fine. You’ll find the same kind of numbers in the permanent ostomy population aswel.

    Yes Bev, while i didn’t go for a jpouch i did still need another op to remove the residual rectum (about 15cms) that is left after step 1 of 3 of a jpouch plan as UC was ravaging that part even though it wasn’t doing anything. As happens in some situations not everything went to plan during 2nd op and 6 weeks ago i had to have my anus removed aswel as blood was still an issue there but doing much better now.

    Damian, ostomy surgery affects everybody in different ways and obviously not everyone takes to having their poo in a bag and you shouldn’t feel down about that as you are not alone. I’d like to point out that other people cant smell the contents of your bag and its mostly always your brain making you think they can, I’ve suffered with this so can relate.

    You’ve come this far and very nearly conquered UC. As you don’t get on with your ostomy then i think going for the jpouch is worth the small risks associated with further surgery. Jpouch surgery is extremely successful overall and there’s plenty of people on Facebook groups and on Twitter that will back me up on that. Sure there’s risks but the chance they will happen to YOU specifically are very low.

    You’ve got everyone from this site all rooting for you and i think i speak for everybody in saying we look forward to future posts from you about your progress.

    All the best

    Tom

    • Bev May 21, 2015 at 9:28 pm #

      Thank you Tom for clarifying that. I wasn’t too sure about all of your particulars.

      Because I dread surgery of any type, I would probably opt for the bag for life as well. Hopefully, I will not have to ever make that decision.

      I admire ALL of us for what we have been through…what we have endured and what we can endure…we were all dealt sort of a shitty deal in this life. I know there are some who have it better, and some who have it worse.

      Life. We only have this one.

      Thank you for posting:)

  12. Mary May 21, 2015 at 7:42 pm #

    Dear Damian,
    I also admire your strength to put the truth and your feelings down for everyone on this site to read. Your days of colitis are over and although there is more to be done through surgery, there is a light at the end of the tunnel for you. This light is your healthy life, which will shine again brightly soon. You live in a part of the world where there is help for you and I advise you to seek the guidance of a professional to help you through the months ahead. There are many people in the world suffering from this dreadful disease and You could help them through their dark days, once you are back to top condition (and you will get there!). I know you believe you are alone, but you are not. We are all just a message away to help and talk to you.

    I have always worked hard to guide my son through his suffering with colitis, which has been going on for the last eight years. He has suffered at the hands of one gastroenterologist and I searched for another one who has given him some hope and has stopped his flares. But, my son has never appreciated me and the work I have put into his care and to this day our relationship is strained. My son wants no part of help from his family, in fact, we can’t really talk to him about it.

    So this disease affects people in many ways including psychology and some feel they need support from family and some of those who have a devoted family, feel they don’t want anyone to help.

    I sense you are an extremely strong man and the world needs people like you. Please try not to dwell on the past and with each breath fill your body with determination and devotion to climb through those rocky patches, which life throws at all of us.

  13. C. Miller May 21, 2015 at 7:55 pm #

    I love you for being so honest. This condition shows no mercy sometimes and takes us further than we think we can possibly go. You have endured and you sound strong in your words. You have already helped so many with your honesty. More people are coming every day who need your help, along with all of us, who have this condition.

    What is wrong with this world when no doctor has any real idea how it happened. to us or what to do about it? It is up to us to help all U.Cers. and ourselves. to live a full life.

  14. oran May 25, 2015 at 7:52 pm #

    The trick to life for me-

    when flaring and when not;

    when sitting at work wondering how-in-the-like- f**k am I’m supposed to care about mapping the reporting work flows of evolving distribution channels when I *literally* *just* sprayed bloody diarrhea all over one of the toilets (not my first time) in a stall next to some guy who is basically a stranger but who always wants to go to happy hour with me for some reason;

    when taking my 20th shit of the day as I throw up into the trash can next to the toilet at a time of the middle morning when the only folks unfortunate enough to remain awake are begging for a mercy suffocatingly all their own;

    …is that I don’t have to live all of the potentials of it right now.

    …is that I don’t have to solve all of my myriad problems- physical, financial, psychological, emotional and otherwise- right this second.

    …and I certainly don’t have to suffer every individual pain and social indignity that may exist at any given time in some imagined future..

    I can just breathe in this moment…I can just breathe in this moment.

    …and I practice remembering that, very very actively and very very purposefully; and it’s impossible at first and difficult after that, but it has kept me off of the proverbial ledge for sure… and more than that, over time, it has brought me not happiness but rather something more interesting; something that is there for me everywhere I go, or don’t go, and doesn’t cost a thing…

    What emerged was a semblance of a peace that is, if nothing else, infinitely available and permanently within my individual control.

    It took all of human history to get to this point. Suffering or not suffering, that’s not nothing :)

    Good luck and much love, Damian and others :)

    As Lily Tomlin said, “we’re all alone in this together”…or something like that :)

  15. k May 31, 2015 at 5:27 pm #

    Damian, I have thought of you often in the last 10 days since you posted. I hope the month of June will be better for you and that you have the j pouch surgery and it goes ok.

    I am not athletic or adventuresome, or even very brave for that matter, but I had emergency surgery for uc in 1975. I have had an ileostomy and the famous “bag” since – 40 years now. (j pouches hadn’t been invented yet.) I was so glad to be done with uc, and life has just gone on from there.

  16. Mary June 4, 2015 at 8:29 pm #

    Damian,

    You posted this a day before I had my second surgery. I have been living with an ostomy since February 2015 (just like you) when I had my first surgery following a two an half year flare. Prior to this flare I had lost a child, gone (and still going through) through an ugly separation/divorce and loss my house following Hurricane Sandy. I have had many similar thoughts and feelings as I had endured many losses and what seemed like unbearable emotional pain as well as physical pain. I felt depleted financially and emotionally and was so worried about how I would continue to work and provide for my children. Right before going into the second surgery I had lost a dear friend who had been so supportive after my first surgery. I felt her absence deeply and it pained me that I was still here and she wasn’t. After the second surgery I returned to a life full of grief and the stress of being a single parent, going on my sixth year of seeking a divorce and facing a foreclosure. Ugh, MERCY!!! I found myself in a dark place too, wondering if I would ever get better, if anything would ever get better. I would dig deep searching for something left in me that still wanted to fight but come up empty. I hear you brother!!

    I hadn’t looked at the website much since I got home. Thought it might help me today and it did. Reading what you wrote and hearing other peoples responses to you restored some hope. That there are people that really get it!! That there are people that are loving and caring even if they never met you before. The best thing for me is to think outside of myself. I don’t know you but reading what you wrote made me feel less alone. I wanted to let you know that. If you can get through this given all that you have gone through, I believe I can too.

    Please do me a favor, and leave a much needed response. I have no choice but to finish what I started now. Let’s keep fighting together!!!

    • Damian K
      Damian June 6, 2015 at 12:56 pm #

      Hi Mary,

      I thank you (and everyone else here) for responding to what I wrote with such heartfelt and sincere thoughts. I had debated for several days whether or not I should respond to any of the messages and especially yours. I am not feeling particularly optimistic at this time. In fact it’s quite the opposite. I awake each and every morning with unearthly dread. All night I suffer from nightmares. Sometimes the dreams are worst than nightmares even. Dreams that I am back to my normal life before the Ulcerative Colitis (and the violating surgery) destroyed everything. Then I wake up in horror to find that reality IS the nightmare…

      I do not feel that I am any source of inspiration and I’m not going to spout out textbook affirmations and phrases of positivity. Everything is NOT rainbows and puppy dogs. Life is fragile. Very fragile. And as a result, as you are well aware, things can take a very dark turn within a heartbeat. Yes I have experienced many trials and tribulations in my 40 years on this planet. It has been a life of heartache and pain. I always hear the saying that we are all extensions of God, but I have a hard time believing or understanding that, for why would God want to experience so much pain?

      When I see an ambulance rushing by me, a blur of lights and sounds, in a life or death dash to the ER, I must admit that I am overtaken with jealousy. Or rather regret. I would trade my life in an instant for someone who could live and make use of their life to help others. My own life has been a waste and that’s truly how I feel. I apologize to God every day for wasting the existence he has given me and falling far short of the person I should’ve been. The person he expected me to be.

      In reading your story and realizing what you also have gone through (and continue to), I marvel at your courage and strength. You have experienced so much pain and heartache as well and I can sense the inner struggle within your spirit. I do not know why life throws so much negativity at some people while others experience so much happiness. It makes no sense but does remind me of a rather appropriate joke:

      “Why do bad things happen to good people?”
      “To balance all the good things that happen to bad people.”

      Of course that is far from reality, but in a sense it actually does make a sinister sort of sense. The Yin Yang of life and nature I suppose. My heart goes out to you for having to experience the loss of a child, a friend, a house, and a marriage. I give you so much credit for getting through all that and STILL having to deal with this horrible health situation we are all in. Is the second surgery your last or do you have one more? Because of the severe condition me and my colon was in when the first surgery was performed, I still have two more to go (3 total). The next is slated for late next month-July. I still have huge regrets for having my colon removed. Everyone keeps telling me that it was life-saving and needed otherwise I wouldn’t be here now. No one can know that for sure. Granted I would end up in the hospital every 2-3 months needing blood transfusions and major medications, but I would usually at least have one or two good weeks following these ER/hospital stays. To me, it was better having those 2 good weeks every three months than where I’m at now, for this is truly the epitome of despair and dread. I often wonder…how many failed skydiving accidents were intentional?

      In closing, I thank you from my very soul, for taking the time to write such a thought provoking response to me. I know that you are strong, very strong. I can sense it. You will make it through this and be inspirational to others. To your children. As evidenced by the responses on this site, people do care. I hate that it takes such pain and suffering to bring out humanity, for very rarely do I see such compassion on the streets of Los Angeles, or in traffic, or in everyday life. But those of us who have experienced such pain and loss, or know others that have, we have received a glimpse behind the veil. We know that the material mundanity of existence really means nothing. It’s love and compassion that makes life worth living. Thank you so much Mary. Keep on keeping on…

  17. Mary June 8, 2015 at 3:58 pm #

    You did make use of your life to help others even if that wasn’t your intent. Just by the sheer fact that you took the time to share your story on here.To me it took courage that I didn’t feel that I had. It did wonders for me because you spoke the truth and you didn’t try to sugar coat this disease in any way. Believe me I try to stay positive but more days than not I haven’t found it possible. I find it difficult to stay mentally strong especially after sustaining so much trauma emotionally and physically. It was like you were putting my own thoughts into words. Although I have some good friends, I don’t feel like they truly understand this plight. The things they talk about sometimes seem mundane and superficial. Nevertheless, I know they care about me. I don’t tend to want to see or talk to people when I’m at my worse.

    I wasn’t sure I would hear back from you either but it means the world to me that you responded and to know that you’re still fighting this disease. I desperately want my quality of life back and I feel we have both endured way too much. Just when I thought my spirit was broken, I found something in your post that restored some fight in me, that something that I couldn’t find in my self. Sometimes you find inspiration where you least expect it. I would say after all that I have gone through I have had a spiritual crisis and I’m not sure where I stand as far as any kind of faith is concerned. I had the surgery because I wanted the suffering to stop, I’m in the midst of it now and have had a very difficult time following the second surgery. In three more weeks I expect to have the last surgery. Almost there and then I’ll see what life is like after that. Even when there are times I don’t want to, I know I have to see it through. I dread going into the hospital again. I also had morphine induced dreams and then I would wake up into a nightmare that I couldn’t wake up from, I had severe panic attacks while in the hospital.

    We will keep on keeping on!!! your show of concern for a fellow uc’er made life worth living today. we all look for something to hold on to. I’m hoping for relief and good health for us in the future and for all others that deal with this disease.

    Thank you Damian! I know it’s not easy to be in this place.

  18. Mary June 8, 2015 at 4:42 pm #

    P.S. We are all perfectly imperfect.I believe we were designed that way. I will think of you fighting your fight when I go ahead with the next surgery. We need to get through this somehow. I don’t claim to know how but I just know we do. Everyday we get through with an ostomy is another day closer to being without it. It felt good to fill up two garbage bags with uc meds after the first surgery. No more steroids!!

    • Damian K
      Damian July 18, 2015 at 4:37 pm #

      Hi Mary,

      By now you must’ve had your third and final surgery and I’m thinking about you and wondering how things are currently. I have the second surgery (of 3) next Wednesday. My friends are concerned for me but I’m actually not. Per my posts, I’ve made up my mind a long time ago that I am unwilling to live my life with an ostomy bag glued to my side. I sincerely hope my surgery is a success, and I can move on to the third and final in a few short months. If things go horribly awry though, I have the means to make this suffering cease. It angers me when the doctors keep saying that I can still live a normal life with a permanent ostomy and enjoy doing the same things I did before. That is complete BS. I sit here watching the rain outside and miss the days when I would hike into the mountains on a misty, rainy day. That is an impossibility now though, because the ostomy requires too much upkeep-nearly an impossibility in rain. I used to enjoy skydiving, but again, because an ostomy is very unpredictable and could require instant maintenance, that won’t happen again. Body surfing and wrestling are now distant memories. I could go on and on and on. The point is that knowing what I know now, I would’ve taken bleeding to death versus having to take matters into my own hands. I don’t want to die…I don’t think anyone really does, but I also won’t live with any more suffereing. I don’t have children or a family that needs me or is dependent on me. If I did, my perspective would perhaps be different.

      • Tom
        Tom July 18, 2015 at 11:03 pm #

        Damian

        Glad you’ve got your surgery soon, im sure it will go well.

        I find it interesting the different experiences people have with ostomies. I’m not sure sure what the instant maintenance you refer to is? I’ve carried a spare bag and wipes with me everywhere for the last 2 years and only ever had to use them once. Despite cycling, hiking and swimming in all different temperatures.

        It’s a shame you haven’t had the same kind of experience as me and others. Ostomy care and supplies are excellent here in the uk, and i read all too often the problems in the US with insurance not paying for enough supplies etc.

        Good luck with your op and stay in touch

  19. Mary NY July 19, 2015 at 2:59 pm #

    Hi Damian!!

    Thanks for thinking of me. There is no one who understands this struggle more than others that are going through it.

    Well, I did have my last surgery on June 22nd. This was a week earlier than I had expected. The week prior I wound up in my local er and from there into NYC to spend three days in Mount Sinai because I experienced a blockage. They discharged me Thursday evening and I returned to the city three days later to prepare for the last surgery. I believed I would be home four to five days after the surgery. However, I didn’t get discharged until July 2nd. I wound up developing a high fever for a couple of days and still had a blockage as the results of swelling or twisting of the small intestine. I had to have ct scans to examine my j-pouch, and also needed a ng tube put up my nose and down my throat to drain my stomach, and they sustained me by putting me on iv nutrition. On the bright side, I did have a room with a window view this time and I amazingly didn’t have any panic attacks. Also, the nurses and personal care assistants there treated me really well. It was that compassionate care that helped me get through this incredibly difficult time. My surgeon said to me at one point, that I was one of the unlucky ones. Tell me about it! Story of my life!

    So I’ve been home for about two and a half weeks now and haven’t been feeling marvelous. It’s definitely better being home than in the hospital though. I have had to go to the bathroom so much and have been pretty uncomfortable. I’m feeling very exhausted and my body is going to need plenty of time to recover. My doctor suggested doubling up on the lomotil. So since we are honest with each other, it’s been a real struggle. I’m hoping things will in improve in time and that I’ll start getting back out there again. For now, I’m in bed mostly and I have gone out a few times for a short bit for walks, or to the grocery store but then I generally need to come home and rest. I’ll tell you it has been frustrating and I have been dealing with depression and suicidal thoughts. If I fight the good fight my children will know that I did that for them. I want to get better for their sake and mine. However they are young and I think they are losing patience with me, while I’m feeling worn out from fighting so long and am losing patience with this disease. It has taken so much from me, even being the kind of mother I want to be. You’re right, because I have kids I have to suffer through this. This disease or something else is going to have to take me out of this world because no matter how much pain I’m in I’m a mother. Maybe not the way I want to be but the way I am. I don’t want to be in this condition or experience so much pain and suffering but even more so I don’t want to cause it.

    You may not have children but there are people who care about you deeply. Believe me I have also thought this would have been so much easier if I had just died when I was in the hospital but I didn’t. I wake up everyday and don’t want to get out of bed and say to myself, “here we go again.”

    I’m thinking of you and I’m hopeful that your surgery will go well. I often say I do everything the hard way. I know that living is the harder choice right now. I’m asking you to choose the hard way with me for now. I’m hoping for simpler choices for us in the future and for peace for us both.

    Please be in touch with me after your surgery and remember you are not alone. I often have to remind myself of this because I’m surrounded by people but yet feel so alone at times. Best of luck on Wednesday! sending positive vibes from NY to Cali for you.

  20. Mary August 15, 2015 at 11:55 am #

    Hi Damian!!

    You are in my thoughts. Please reach out and let me know how you are.
    Are you doing ok?

    • Damian K
      Damian August 15, 2015 at 4:39 pm #

      Hi Mary,

      You have been in my thoughts and prayers also. I truly hope you are healing well from your final surgery; mentally, physically, emotionally, and spiritually. How has the recovery process been?

      I had my second surgery (abdominal reconstruction) a little over 3 weeks ago on July 22nd. Because it’s the most difficult of the 3 surgeries, my surgeon had told me to expect to remain in the hospital for 2-3 weeks, and he went over a list of the possible horrific complications that could result. The surgery itself lasted 7 hours, but amazingly I felt great almost immediately after. It’s quite bizarre. Because I was healing and adjusting so well, I was actually discharged from the hospital only 5 days after this major surgery! The doctors and nurses said they had never seen anything like it. I firmly attribute this to God, and I’m so grateful for how he’s guided me through this process. That and all the thoughts and prayers of members of this site as well as others. I’m not delusional though, in understanding that anything can still happen. Things could take a turn for the worse and I’m always trying to mentally prepare for such a scenario. I am thankful to have made it this far though. Despite still taking pain meds for stomach pain, I’m feeling really decent and for the first time in a long, arduous journey, I’m feeling optimistic about the future and can see a light at the end of the tunnel. I’m about 4-8 weeks away from having the 3rd and final surgery to reconnect everything and remove this ostomy. I have such profound respect for those who have a permanent ostomy. Their ability to cope and adapt just leaves me in awe.

      I truly and sincerely pray that everything goes smoothly and my final surgery is a success. If things go horribly wrong, I’ve set March 25th, 2016 as the day I retire from this world. It’s a day before my birthday and Good Friday. I feel that it’s a perfect day to go out and in doing so pay reverence to Christ, on the anniversary of his murder. Regardless of which faith a person follows, or which God they believe in, I find that most people believe in some sort of Divine Intelligence. Even Athiests aren’t so athiest when one starts to peel the onion, so to speak. I have great comfort of the thought of one day reuniting with the Creator, and this is but one reason that death does not frighten me.

      Please do let me know how things have progressed Mary. I wish you nothing but happiness and freedom from this horrible situation that so many of us find ourselves in.

      -Damian

  21. k August 15, 2015 at 3:42 pm #

    Mary and Damian,
    I have thought of you both in the last month and hope that things have gone as well as one could hope after such major surgery. Knowing what you and others have gone through makes me realize how easy I really have had it with my ileostomy for 40 years now.

    • Damian K
      Damian August 15, 2015 at 4:43 pm #

      Thank you so much K. It means more than I can articulate in words, to know that you and so many on this site have us in their thoughts and prayers. I truly wish I could take all our sadness and despair away. Much love,

      -Damian

  22. Damian K
    Damian September 26, 2015 at 10:07 pm #

    Hi Mary,

    I’ve been thinking of you a lot. Please let me know how you are doing and how things are progressing in your recovery. I have my 3rd and final surgery date in 2 weeks. Taking care of my ostomy (since the second surgery) has been a living nightmare. Because it’s higher up than the first one, it’s constantly active, constantly causing leaks or blowouts in my bag, constantly keeping me stressed out beyond belief. I’ve been taking limotil but it only slows things down enough to quickly change bags then right back to the headache. I’ve lost a lot of weight because I don’t want to eat and deal with any of this. I’m pretty much at the end of my rope. The last surgery being in sight gives me a little hope but how can I be optimistic when I just keep getting beat down repeatedly? I just have no interest in anything anymore. Tomorrow I’m getting rope. I want it handy in case things don’t go as planned. I just want peace…

  23. mary NY September 27, 2015 at 4:10 am #

    Dear Damian,

    Thank you for reaching out. I’m sorry for my delayed response. I had a very difficult time after my second and final surgeries. I wound up being in the hospital a lot longer than I expected. Yes, all of this has been a living nightmare and I keep holding on hoping things will get better. I had lost hope for awhile and I was feeling like things would never get better. I was very frustrated as I thought I would be doing and feeling a lot better than I did after the final surgery. I was going to the bathroom constantly, it seemed like that’s all I could do. My butt was raw and on fire. Meanwhile, I was thinking being able to poop out my butt again was going to be such a glorious event. During my recovery I stopped eating because I did not want to go to the bathroom one more time. It didn’t feel like my body could handle it and I just wanted it all to end. This was new pain and discomfort I was experiencing. We are certainly no strangers to pain and discomfort but there was no mercy. To me it was like living life with u.c., I was still a slave to the bathroom and had all the same psychological issues around food and eating. I doubled up on limotil but even then it seems like all I ever did was go to the bathroom and I couldn’t see beyond the pain and discomfort I was in. It felt like there was no end in sight. I now take something called tincture of opium which has helped to slow things down.

    I know how you feel. I had never been in so much pain as I was when I was in the hospital last. I remember wishing someone would just say take these pills and it will all be over. For some reason I endured the pain and I’m still here. I feel like I owe it to those around me that I have loved and cared for that have struggled and fought the good fight to keep fighting myself. I don’t think I’m any stronger than the next person, but for some reason I’m still here. Maybe I’m here for you and you are here for me and many others as well. Well I’m counting on you to continue to be here. Trust me when I tell you this is a temporary condition. It’s so hard to see the light when it’s clouded by the darkness of depression. We have not gone through this for nothing!!! We have lost days, months and years of our lives to this disease and the depression that is the result of it. You will return to doing the things that you love doing. Yesterday, I went to a conference, and danced in front of hundreds of people. That’s the thing when you lose everything and then start to get it back you enjoy everything that much more. Two months ago I could barely walk. Now it has been three months since my surgery. I returned to work at the end of August although it has been difficult it gave me back some normalcy and has been good for me mentally.

    You need to dig deep and find that strength that you don’t think you have but you absolutely do. It may even get more frustrating before it gets better but you will make it through. Your story is not over yet!!

  24. Angela January 9, 2016 at 7:56 am #

    Dear Damian and Mary,
    My 20 year old daughter has been diagnosed with ulcerative colitis. Her life is pretty much at a stand still. I read through your posts this morning. I am seriously considering surgery for her since all these meds are not working. The two of you have been so honest and inspiring. Would you please post updates as to how you are doing? I have to be honest Damian, your posts broke my heart and I am hoping you are doing better.
    Angela

  25. Mary January 10, 2016 at 3:13 pm #

    Hi Angela!

    I’m so sorry your daughter is enduring this disease. I was originally diagnosed in my twenties and lived with the disease for twenty years until I finally insisted on getting the surgery because I was so fed up with the various meds.

    All I knew is that I couldn’t continue living the way I was. My colon is now gone and there is no turning back. Surgeries were scary but I was running out of patience after a two year flare. I felt like surgery would release me from this disease but what I now know is sometimes your just trading one set of problems for another. I think people’s experiences really vary so much but this is true with meds as well. I wish I had explored fecal transplant more. I actually found a doctor that said they would do it as I was not willing to administer it myself, as I saw some people with uc were doing. It seems to be getting more and more attention these days and I think it is a matter of time before it will be approved by the fda for patients with uc. I almost faded away from an infection following the last surgery which turned out to be Pouchitis. I had lost the little weight I had gained after surgery. I’m on steroids again to treat the inflammation of the pouch. For me it has not been an easy road but many have faired much better. I just think there are no guarantees. I’m not sure where I stand yet whether I’m happy or not with my decision but I had to do something. Please look into fmt.
    Where do you live?

  26. Angela January 10, 2016 at 3:51 pm #

    Hi Damian,
    Thanks for getting back to me. I never even considered fecal transplant. I have to research it. My poor daughter is in so much pain. You have had such a long painful journey and I wish you only good things from now on. I live on Long Island in New York. I’m going to do some research right now. Thanks for the information and let’s keep in touch.
    Angela

  27. Mary January 10, 2016 at 6:00 pm #

    Hi Angela!

    I also live on Long Island. We need to find out a way to talk. I have a lot of resources. Some of which I came across after my surgery. There are some things I wish I knew before surgery.

    Mary

  28. Angela January 10, 2016 at 7:56 pm #

    I would love to talk. Where are you on Long Island? I am in Floral Park.

  29. Mary January 10, 2016 at 8:39 pm #

    I’m in Suffolk county. I started seeing a g.i. in Lynbrook after my surgery because I was not improving. I wish I had gone to see him before I had the surgeries. Have you gone to any of the support groups in Garden City? I’m wondering what her doctors are advising you do to at this point. Is your daughter able to eat at all? Even if she is she’s probably suffering from malnutrition. I survived on liquid nutrition for awhile.

  30. Mary January 10, 2016 at 8:41 pm #

    Damian,

    Happy New year!!! Give us a shout out.

    Mary

  31. Angela January 11, 2016 at 6:34 am #

    Hi Mary,

    Damian has given me the idea of perhaps going the route of a fecal transplant. (Thanks Damian!) Michelle is not able to tolerate the meds they put her on. I’m afraid her next step may be Humira but I hate the risk of lymphoma so I have been resisting this. As of now there is no quality of life. She is not able to return to college this semester and basically sits home. I have an appointment with Dr. Vrabue Raluca next Tuesday. She is in Mineola. This is our third doctor since September. What is the name of the dr. in Lynbrook and would you know if he does fecal transplants. I know it is still in trials so it may be difficult to find a dr. Also any other resources you are willing to share would be wonderful!
    Thanks,
    Angela

  32. Mary January 11, 2016 at 8:32 am #

    Hi Angela!!

    I don’t think Damian has weighed in yet. Although, I’m wondering how his experience has been and what he would say after completing all three surgeries. My hope is that he fared better than I did following his surgeries. I know he did well after the first one. I sent you the message about the fecal transplant. There are a lot of comments about that on the ihaveuc website. Adam, also recently sent me a link to an article about a clinical trial that is being done with uc patients.

    I tried Humira and it didn’t work for me. Although some people claim it works wonders for them, I developed another auto immune disease after only taking it for three months and also had a full flare of uc. I want to scream every time I see the commercials for Humira. Humira was the last straw for me, although an immunologist was pushing Remicade infusions I was not willing to experiment any more. I didn’t feel like it was harmless to give it a try. I feared the side effects and I hadn’t had any luck with other meds so I didn’t see why that would be any different. My own mother has been by my side through this, I know how painful it has been for her to see me go through this and to feel so helpless at times. Most of my family was behind my decision to have my colon removed especially since my Dad died of colon cancer.

    The doctors name is Dr. Good (I’m not kidding) and he lives up to his name. He is extremely knowledgeable and is up on the most recent treatments for IBD including fecal transplants. Part of the problem is without FDA approval it is still considered an experimental treatment. I worked in Mineola/Hempstead area for many years. Let me know if you would like to meet and I could go into much more detail. Sounds like you will have to make a crucial decision very soon. Arm yourself with as much information as possible.

    I’m here for you.

    Mary

  33. Damian K
    Damian January 11, 2016 at 4:37 pm #

    Well I’m going to leave a reply and I’ll be as honest and nonbiased as I possibly can. This is to help and provide insight into the experience I had. I most certainly wasn’t alright after the first surgery-although admittedly 99.9% of my issues were psychological. After finally having all three surgeries and speaking to several people “in the know”, I now believe that I was suffering from severe post-traumatic stress disorder as a direct result of the procedures-not necessarily the illness itself, in which I had battled the severe UC for nearly 3 years (and almost died from it in February of 2015).

    I pose two questions to anyone who is looking to have the surgery or knows of a loved one considering the J-pouch surgery. First, is quantity of life more important than quality of life? Basically, most doctors and surgeons will tell you that they will do anything possible to prolong a life. Often times, a person will do anything possible to prolong their own life (or the life of a loved one). But you have to consider the quality of the remaining days that are in fact being extended. After having the first surgery and dealing with a colostomy bag for numerous months, I found that I actually regretted having the surgery in the first place. Why? Well despite what many on this site will tell you, I started to fall into a severe downward spiral of depression. Not only was my self esteem mortally crushed but I literally couldn’t do a lot of the outdoors type things I once loved doing (surfing, snow skiing, skydiving, rock climbing). The apparatus was just way to finicky to risk certain things. I had come to terms with my severe UC and knew that it was more than likely going to cause the end to my life sooner than later as I had become severely malnourished and deathly anemic. I was at peace with that though and considered myself to have a very close relationship with God. After the surgery, I felt like I avoided the natural course of my life’s path in order to “survive at any cost” and really was depressed. It was hard to envision a time when all that I was dealing with would be in the past. I only agreed to having a colectomy in the first place because I was told it was “reversible”. Well that was somewhat of a lie. There is no reversal to having a major organ removed. All you are doing is trading one set of circumstances for another-hopefully better option. But it wasn’t as easy and manageable as all the doctors had glossily implied. The second question is whether or not you have a family or people that depend on you? In my case I do not. I’ve never had children. I’m not married. And I have no living relatives. It’s just basically me and my close friends. This is perhaps another reason why I was more resigned to my terminal fate from severe Ulcerative Colitis than most might be. Going through multiple surgeries along with dealing with follow up appointments, hospital visits, Disability forms (they don’t make it easy at all), etc. all requires help. If you don’t have help that is readily available, it’s just going to make the difficult even more arduous.

    So after 5 brutally long months of dealing not so well with a colostomy bag, I had surgery number 2. This was basically the abdominal reconstruction needed to create the J-pouch itself. This is the big one because the pouch surgery needed to go successfully in order to have the 3rd and final surgery. If it didn’t, I had already decided a peaceful way out of the misery. Dealing with things after surgery #2 was more difficult mainly because the colostomy acted totally different since it was a new location of the small intestines. It produced more output and way more often. My depression or PTSD only increased and things were getting worse. It seemed like the 3rd and final operation would never arrive. Finally, 3 months after surgery #2 (so 8 months of hell in total) I was cleared for the 3rd and final surgery. I was nervous as hell because I wasn’t sure of anything, much less the success of the J-pouch or even the reconnection. Even if those went well what was the recovery going to be like? There’s a veritable grocery list of possible horrible outcomes but one has to try and remain as positive as possible at this point since you’ve already committed to the procedures. Fortunately the surgery went well but I developed postoperative Ileus. This can be a potentially life-threatening complication in which the stomach hasn’t woken up from the surgery. If it lasts long enough it can result in organ necrosis or organ death. I was vomiting nonstop for 2 days and had to be intubated. Finally my insides woke up and the ileus slowly went away…I was lucky.

    It has now been 3 months to the day of my 3rd and final surgery. Things are somewhat alright. I’m blessed in that I haven’t developed any complications from the surgery or pouchitis and I was able to return to work. I definitely don’t feel normal though, or like I did 3 years ago-before I developed the severe UC. I still have to closely monitor what I eat, I still have to go to the bathroom frequently which does inhibit some activities (long hikes for example), I still have abdominal pains and rectal pain/bleeding depending on certain circumstances, etc. All in all I’m still alive and a lot better mentally as I no longer have a colostomy bad to deal with. No one should ever have to witness the body functions of what happen internally. I’m happy that I’m still alive but I do question how much longer all this pain and suffering has bought me. The medical procedures alone (during the 8 months of 3 surgeries) were more of an ordeal that I never care to repeat (some of the worst experiences of my life) and there’s always the chance that some issue could arise. People with J-pouches are at high risk of developing cancer because of all the stress and manipulation done to their insides. Was it worth it? If I had a family=absolutely. As I am=I’m just not sure. Death is an inevitable outcome for all of us. Some die young and some die early but we all die eventually. It’s a fact of life. Nearly 2 people in the world die every second. It really boils down to how happy you are with your current life as it is. I thank God that I made it through the past year without giving up (I was very VERY close) and that I’ve been able to return to a somewhat normal existence if you can call it that. I do have lot to be thankful for and I count my blessings every single day. I would’ve preferred to never have developed UC in the first place. In retrospect I do wish that I would’ve waited. I had tried every medicine, biologic, injectable, and even chemotherapy and none of it lasted more than a week or two before the UC would come back with a vengeance. I just can’t help but feel like I was forced into the colectomy surgery when there still may have been another possibility.

    • noelgallagirl January 11, 2016 at 5:52 pm #

      Wow. Great post Damian.

      Thank you for being so honest.

      I have always tried to avoid surgery for all of the reasons that you state. The elusive other possibility.

      It drives me crazy to think that a cure will come along and I had my colon removed.

      Cheers to you and all of us. Choices that nobody should have to make.

  34. Angela January 22, 2016 at 4:20 am #

    Hi everyone,
    Since my last post my daughter had had a blood transfusion and now needs an iron infusion. Her new dr. says she is severely I’ll and we need to act quickly. She says the latest treatment is entyvio. We are in the process of trying to get our insurance company to approve it. At this point I have no idea what to do. I just know I am tired of seeing her so ill. I can’t imagine what she is feeling.

  35. Damian K
    Damian January 22, 2016 at 7:26 pm #

    Hello,
    I’m very sorry to hear what your daughter is going through. I sincerely hope the insurance approves the Entyvio and it helps her condition. I remember all the blood and iron transfusions I used to have to get (usually on my lunch breaks from work) and they certainly weren’t pleasant. I too had tried Entyvio along with Remicaid, Humira, azathioprine, etc, etc, etc. None of it worked for me. I took every medicine and biologic made and I would be back to my old self maybe a week or two before my UC would return with a vengeance. I believe, however, that it’s worth trying everything/anything before resorting to surgery. Once something is taken away it cannot be replaced. And there is no such thing as a “reversal”. Just keep supporting your daughter and keeping hope alive. She needs, above all else, your love and company. She is lucky to have that and it’s worth its weight in gold. I will send my thoughts and prayers to you both and I truly hope you find something that works and puts her illness in remission. No one but her can truly understand the magnitude of what she is going through. Just try to be patient and understanding -which isn’t always easy. God bless you both and take care.

  36. Angela January 23, 2016 at 3:35 am #

    Thanks Damian. My daughter and I have a very close relationship. In that regard we are blessed. We got the approval from the insurance company yesterday. I am having very mixed feelings about the entyvio but at this point there really seems to be no other options. Thank you for all of your prayers and good wishes. I will let you know how it goes. Try to stay positive. I will keep you in my prayers.

  37. Mary January 24, 2016 at 6:56 am #

    Hi Angela!

    You and your daughter have been on my mind. Yes, that is the latest treatment. It certainly has fewer side effects than the biologics (Humira and remicade). I think you should consult a surgeon asap because of the severity of the disease. Sometimes people with uc find themselves in situations where the colon needs to be removed immediately. If that occurs you find yourself with no time to weigh out your options. Did your doctor recommend a surgeon or discuss the possibility of surgery with you? I hope that will not be necessary but you have to be prepared. I hope she responds well to the new med. My dad use to say, hope for the best but prepare for the worst.

    I’m still here for and and your daughter. I will assist you in any way I can. I know what a scary time this is.

  38. Angela January 24, 2016 at 8:17 am #

    Thanks Mary. She did say that the entyvio has to work fast because she is so ill. I have a feeling she will mention surgery on Tuesday. I agree we need to prepare. Who did you use?

  39. Mary January 24, 2016 at 8:36 am #

    Damian,

    It so good to hear you weigh in and that you continue to persevere despite all the hardships you have gone through. I’m six months post my final surgery now and have been fighting new battles like you. It was very frustrating to have doctors tell me I needed to be patient and that the way I was feeling was normal. I struggled to eat, gain weight and to return to work when I was so weak and on so much medication. I was struggling mentally and physically. Prior to finally getting yet another ct scan and the proper diagnosis, I admitted myself for psychiatric care because I felt like I was losing my mind. I’m now being treated for depression and anxiety. It’s no wonder that anyone going through this experience would need intervention for the emotional impact. Since most of the body’s serotonin is stored in the gut, it goes with out saying that depression will surely follow after surgery to remove it.

    What was the other possibility you referred to? I’m wondering if you also thought of fmt.

  40. Mary January 24, 2016 at 12:06 pm #

    Angela,

    I had my surgeries at mount Sinai in NYC. I had both good and bad experiences there. The nurses after my first and third surgeries provided such excellent care, really going above and beyond to keep me going.

    A friend at work who had colon cancer and my neighbor who had jpouch surgeries also, saw Dr. Procaccino at north shore university hospital. You can check him out online. He has extensive experience in the area of colorectal surgery. In hind sight I would have gone to north shore. It was not easy to get in and out of the city and I needed to go into the er there because I had a blockage. I just think it makes better sense to be closer to home because there is so much back and forth and you just happen to have one of the top doctors in the field right at north shore.

  41. Mary March 25, 2016 at 9:44 am #

    Damian,

    I’m thinking of you today, tears running down my face. I know what a struggle this has been. I hope we can start anew with the spring upon us and continue to press on and find joy in living life again.

    I hope this message finds you well.
    Mary

    • Damian K
      Damian March 25, 2016 at 11:42 am #

      Thank you Mary. I think of you often, along with all the other amazing individuals that have contributed replies or posts on this subject. I’ve been having a very difficult time finding joy in much these days-which in turn makes me feel even sadder. I should be elated to still be alive. I should be grateful to God and the universe for being able to watch another sunset, but instead I feel like a revenant. I did find out that around 90% of Serotonin is produced in the stomach-primarily the large intestine. Well with half of my insides gone, it’s no wonder that elevated moods have been sparse. Also, because of being on heavy doses of morphine and especially dilaudid for 2 years, there’s precedence that the serotonin channels in the brain could’ve been damaged. This will require more research but I’m still trying to push forward anyway. One day at a time right? Thank you Mary. I have so much compassion and respect for everyone on this site and those around the world dealing with such a horrible disease and circumstances.

  42. Mary March 25, 2016 at 12:23 pm #

    Damian,

    Every day I wake up and start a battle with my body and with severe depression. Some days are ok. Today was hard to get out of bed. It feels like happiness is out of my grasp. I was just trying to explain to a friend the effect the surgery has had on my emotional state and that there has been a significant and I imagine long lasting impact on my mental health. Sometimes I feel like I’m a shell of a person. I have sought out treatment and take an anti depressant but yet still feel depressed. I feel exhausted from fighting. I’m trying so hard to get somewhere and to gain and hold onto a positive state of mind.

    Glad your here! We share a struggle in common.

    Mary

    • Damian K
      Damian March 25, 2016 at 2:11 pm #

      I completely understand Mary. More than you could possibly imagine. I too have tried anti-depressants and no luck. In fact they rather make me feel worse. I believe now I’m in the bracket of “treatment resistant” people in which meds just do not help. We have to keep finding a way to push forward though.

      Rage against the dying of the light, as the Dylan Thomas poem goes. Do not go gentle into that good night.

  43. Keyla October 25, 2016 at 6:19 pm #

    Damian, I read your post and it broke my heart. Keep fighting because you are not alone in this fight! I hope to know you are okay. I fear you may have given up and would love to make sure your ok. Sending love and healing vibes from Massachusetts.

    #youareNEVERalone

  44. Mary October 26, 2016 at 6:00 am #

    Hi Keyla! I would also like to know that Damian is ok. Following my surgery, I have fought two bouts of pouchitis. I had about half of a summer which was an improvement from the previous summer which I spent the entirety recovering from my final surgery. I now have full body psoriasis again following the round of antibiotics and steroids I took to get rid of the initial infection following the reversal. Sometimes it feels like we have been dealt with way more than we can handle. Some days we just are hanging on by a thread.

    On a positive note, I was able to complete a 30 mile cycle event in May. I know that Damian also loves the outdoors and it was hard not to be able to enjoy the things we loved for so long. My hope is that Damian has been able to enjoy some of those things again. I have never been sky diving but I hope to soon.

    Damian, please give us an update. I too, would like to hear something from you.

    • Keyla October 26, 2016 at 12:09 pm #

      Ugh it sounds rough Mary, but glad to hear you are not letting it stop you from going out and getting around! Sending healing vibes your way too fellow UC fighter!

  45. Damian K
    Damian October 26, 2016 at 1:19 pm #

    Keyla and Mary: I’m am so completely touched by your kind words and interest/concern in my well-being. I too have been thinking of you and everyone else that is forced (I use the word forced specifically because I feel like there really isn’t a choice) to go through such an arduous process as we have or suffering from similar illnesses. It’s been almost exactly one year since my 3rd and final surgery and it has definitely been an interesting and challenging year to say the least. I returned to work (after an 8 month medical hiatus) only 2 weeks after the last procedure. I definitely feel like that was rushing things but I didn’t have any say in the matter. Perhaps in retrospect that was a good thing though as it forced me to hasten the recovery and served as a good mental distraction. I started going back to the gym full-time in January and have been able to gain 60lbs back (going from 145 up to 205) so that has also been a change for the better. It’s been a slow process as we all know we will never fully be “normal” again and I’ve had to adjust my diet several times to find what works best. I usually eat as much as I can before noon and nothing the rest of the day. It’s a unique diet but one of the only ways to prevent abdominal pain/discomfort at night. But at least I can eat large breakfasts and lunch. I try to hike up the mountains nightly and I’ve been able to condition myself to where I’m up to 2000 sit-ups a day. I fully understand that doing all this probably isn’t the greatest for someone that has had half their insides removed and 3 abdominal surgeries, but ultimately I’m going to live the rest of my life on my terms now. I surrendered everything to the disease AND the surgeries and I feel now that I have control back (and not in the doctor’s hands), I will live what’s left of my life to the fullest possible and I won’t go through what I did again. No more surgeries, no more procedures, no more medications. My heart goes out to those who are still dealing with all of these things and I send my thoughts and prayers. Only someone who has gone through this and reached the bottom of the line can fully understand. Please take care and if interested you can follow me on Instagram under “Easterfields”. God bless to all of you.

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