12 Jan < > SURGERY #1 Posted In : Abscess, Crohn's Disease, Fistula, Surgery 12 Jan Ryan 12 Comments EmailLike this:Like Loading... 12 Comments Jeannie Reply I’m so sorry for what you are going through. Crohn’s sucks. When my grown son was diagnosed, I thought–great, they’ll give him a pill and he’ll be back to normal. Back to normal never came. Obviously, I didn’t know much at all about Crohn’s. It’s a day to day existence, hoping that some medication will work for you. It affects your life on every level. I hope and pray that the surgery will be of some benefit to you. I also hope that you have a great support team. I’ll keep you in my prayers and hope your story has a happy ending–many do, so there’s no reason that you can’t be one of those happy ending. Blessing sent you way. Ryan Reply Thank you for your nice comments. Sorry to hear your son is a fellow Crohnie. I am writing my blog well after the fact. This 1st surgery happened back in April of 2009. Unfortunately things only did continue to go down hill from there. Had to have my colon removed in March of 2011 and currently I am on Humira. Kim Pardew Reply Hi! Fellow Crohnnie! I hope your surgery went well and you are starting to feel better! I have had Crohn’s for 35 years now. Since I was 21. I started out with 2 fistulas. I went into our local hospital (at the time) in West Palm Beach, Florida and was immediately rushed to the University of Miami were I was taken right into surgery. My colon had gotten holes in it and my fecal matter had eaten a path through my buttocks. To this day I have a nice, dimplely scar on each of my butt cheeks. Then came the draining. And the STENCH!! Even the nurses had to spray room deodorizer before entering. That was the beginning of 35 years of pills, hospitals, surgeries, and ostomy bags. Things are better now. I’ve been in remission for several years now. One thing about this disease – it turns you into a “survivor”! I wish nothing but the best for you! Ryan Reply Thank you for your nice comments. Sorry to hear you are a fellow Crohnie. It truly is a difficult disease. This post was about that 1st surgery which actually happened back in April of 2009. (One month after diagnosis). I am writing my blog in chronological order from diagnosis to where I am now. On March 3rd, 2011 I had to have my colon removed. Currently I am on Humira and Crohn’s has now spread into my small bowel. Have a scope at the end of this month to see what Humira is doing. So glad to hear you have been in remission for several years! Cheryl Reply Dear Ryan, I read an article about you on aol.com today and just felt compelled to find more about who you were. It was your quote about Crohn’s that really grabbed me – you said “It took away my life without taking my life.” I should tell you, I don’t have Crohns. My particular nightmare is an auto-immune bladder disease called Interstitial Cystitis. And although I had symptoms come and go starting in 2002, my case of IC truly ramped up on Mother’s Day 2006 following a miscarriage. I was 33 years old, the wife of an Army soldier and mother to one young daughter. Almost eight years later, my doctor’s are still struggling with how to best control my bladder symptoms & pain, and I’m still struggling with how to best live with it. Like Crohn’s, there is no cure… Just treatment options, elective surgeries, experimental trials, and the drugs (including prednisone) lined up each day. By the words in the aol.com article, I already knew that you understood this type of journey. The one that takes away your life without taking away your life. But, I was unprepared for the picture that tops your blog. As your page opened up, my eyes darted from the pill bottles, to the snake stealing time, to the couch, and I wept. I wept because of relief. Yes, this is my life! Someone understands! Then, I wept out of sadness. Sadness for your suffering, your fight and for the toll I know it must have on your family. A friend once remarked that I must be so relieved & grateful that at least I didn’t have cancer. I responded no, actually I wasn’t relieved. See, with cancer you can gather all your courage and all your resolve and you can fight towards an achievable end. There exists the possibility of complete physical recovery. And whether you live or die, there is an end to your suffering. With a chronic illnesse like IC, you fight and fight and fight, but there is no end. Hence the term “Chronic.” My response both suprised and confused my friend. I’ve often thought, over the past 8 years, that the word “chronic” really doesn’t do a good job portraying my (and others) situation. The word doesn’t sound greedy enough, insidious enough or lonely enough. I truly want to thank you for telling your story. For finding the right words to convey to readers just what chronic really means. Please consider sharing the artwork at the top of this blog with a larger audience. It, along with your writing, is an amazing account of your struggle and one that so many chronically sick people can relate to. I hope your surgery went well. You are in my prayers. Sincerely, Cheryl Ryan Reply Dear Cheryl, thank you for your nice comments. I am so sorry to hear of your struggles with Interstitial Cystitis. I will pray that you find some relief. Although I know that is easier said than done. I have heard others within the IBD community expressing your same sentiment in regards to cancer and the fact that many truly do not understand what a struggle it is for most with a chronic illness. My blog is being written in chronological order. The surgery mentioned in this post took place in 2009. Since then I have lost my colon, had a temporary ileostomy and then a third surgery to reverse that. And I am one of the LUCKY ones with this disease. Not sure where the Cleveland Clinic ranks for Interstitial Cystitis. For IBD they are 2nd in the nation. I had my colon removed there and while that is not a cure it was a state of the art surgery. For that I am very thankful. Keep up the good fight. I truly believe that one day all will be explained to us. Juliet Reply Hi Ryan: I am sorry to hear about you having Crohn’s disease. My mother is 96 and she was diagnosed with this disease 55 years ago.She was about 41 years old She had about the same length removed from her colon and she has a permanent morning diarrhea and a diet to follow. She is tiny and weighs 37 kilos. Her diet has consisted mostly of carbs: rice, pasta, white bread,potatoes, tea, baked sea bass, baked beef, grilled chicken. No condiments except for diet salt. No pepper etc. No vegetables and no fruits. BUT: her spirit, is something to admire. She goes to dinners (without being able to eat there), parties, danced, invites people over, is sociable, funny, intelligent, goes out anywhere because she says: I can’t leave life pass me by just because I got Crohn’s!. She says, people have diabetes or cancer and I got Crohn’s so what. She takes an Imodium and off she goes to teas, dinners, volunteering at a hospital, playing the piano for a charity benefit, dancing, always asking first where is the restroom! We ate at home what she ate. Hospital food. jello, mashed potatoes, mashed cooked cowliflower and carrots (the only veggies she can eat, boiled), hard boiled eggs, boiled meat, boiled rice, pasta, white bread. Nothing fried. Everything boiled and broiled, grilled or baked. No cigarette smoking, and no drinking any alcohol. And we grew healthy. My sister and my dad and I are all healthy. There is a great happiness at home. We watch movies, go dancing, cook, have many friends. In all these years, I have not changed eating what my mom has been eating for 55 years. Only we added fruits and more vegetables to our diets. And she can only take baked apples. But we never ate any fried food. You have not missed not eating at McDonalds or at the Olive Garden. We always eat home cooked meals. We don’t go to restaurants. We organized cooking with friends, a cooking group. We go to watch what our friends are cooking and they come to our house to watch and pitch in with the cooking. Doing this my whole life ( I am 60 ) I am healthy, and our friends are healthy. We are thin and fit and we do aerobics and dance. And I wanted to share the history of my mom with you because you are so much like her. You want to do things and having Crohn’s will not stop you for living a full life. Go out and make it stand out! swim, dance, golf, play tennis, do aerobics. There is nothing you can’t do. And on those bad days, read or watch a movie or write a book about your life, or just sit there and meditate. You will be alright. You are much loved by your family and friends, so love yourself more and enjoy your life. Kudos to you! Juliet Ryan Reply Your family and mother sound incredible. I really enjoyed reading about her. Your advice is absolutely correct. There will be bad days. Mostly though I have good ones. And I cherish those. Gregg Reply Ryan, Did you have all of your colon removed or just part of it? Ryan Reply Hi, I had all of my colon removed on 3/3/2011. Chuck Reply Dear Ryan, I am a 61 yr old man who 7 months ago had a 2 1/2 week bought with diarrhea. My Primary Dr treated me with Pepto Bismol until I decided to take myself to a Gastro- Dr. I was given an expensive suppository then a expensive perscription of Budesinide. I was then given a colonoscopy and a biopsy. The Biopsy came back as crohn’s desease. I haven’t had another bought of diarrhea in 7 months and my Dr wants to load me up with Vaccines then start a Remacade infusion treatment to lower my immune system. My bowels have been operating perfectly and I have no trouble with any kind of food I eat. I am suppose to begin treatment in 2 weeks and have decided to not go through with it unless I have a repeat of the diarrhea I had 7 months ago. I don’t know what to expect going forward and am just having this gut feeling to I should wait and see. I am reading what ever I find on the desease and was especially glad to learn of your site. I am so sorry you have had to endure this desease and have to believe you are a hero for the great challenges you have accepted and your success’s at coming back on top of your game. Even an older person like myself can believe it is possible to make the best of what is left of a lifetime. Your story can only help give courage to those of us just learning about the desease and educating ourselves better understand what to do. I am happy your surgery gave you your life back and can only pray that your life continues to be fullfilled. I feel truly blessed that I have made it 61 years soon to be 62 before the desease showed its ugly head. Again I thank you for your bravery and supporting Crohn’s awareness and for being the role model for us all. God Bless, Chuck Ryan Reply Hi Chuck, Thank you for your kind words. So sorry to hear of your diagnosis. I too feel lucky that it waited until I was older before rearing its ugly head. I hope things continue to go as well as they can for you. Please keep in touch. Regards, Ryan Post a Comment Click here to cancel reply. Your Name Your Email Address Your Message Notify me of follow-up comments by email. Notify me of new posts by email.