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.
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.
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…
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