My Story-How I healed from Crohn's
I get asked this question a lot, and quite frankly I would say it is the most difficult question for me to answer because of the emotional charge. As a speaker, it is easy for me to talk about anything. Growing I would talk about anything and most would come to me for guidance in areas they could not openly talk about. My father said I was a natural born teacher.
Recently I recorded my story for my website, but I have yet to put it up because...well..I do not know really; maybe it is fear of ridicule, fear of being accepted, fear of being dragged through the mud...I really do not know. The funny thing is I see hundreds of you Crohnie's out there blogging about yourself and your journey and I admire everyone of you for your courage.
I wanted to share my story here, because I have to admit this is one of the best community sites out there that promotes and encourages a positive environment-I'm grateful for that.
When I turned 19 years old I was excited because I was now considered an adult! I was old enough to vote, drive and drink alcohol..wahooo life was great! It was the summer and my best friend and I had just graduated from High school. Her Mum had a cottage up in Kingston and we were on our way to party! Like silly young adults we drank way too much and I was sick as a dog! I figured it was a hangover and that in a couple of days it would pass! It never did!
I spent that summer not being able to eat very much, and pooping like crazy! I tried every diarrhea remedy out there and was drinking Kaopeptate (anit-diarrhea) with a straw! There were tons of changes going on in my life good and bad and coupled with my ailing health it was not looking good. Of course I was in and out of doctor’s offices, something I had been doing my whole entire life and there were no answers.
I was given a slew of drugs and nothing helped. Week before I was to start College I was at my boyfriend’s house and ran to the washroom and vomited up blood. Now it was getting serious. I checked myself into the hospital and spent the next month there scared to death and pretty much alone. I had borage of tests and still no answers. Finally the doctor came in and said I had Crohn’s disease. I misunderstood because I latched on to the word disease and my heart sank, and my world went terribly fuzzy and the word disease echoed over and over. I cried a lot. You see when I was younger I decided after seeing others suffer from disease that if I ever got a disease I would kill myself. Now suddenly I have a disease and obviously I was not going to kill myself… but now what?
They continued to do tests on me and I started to have symptoms I had never had before and I cried out for the doctor who told me it was all in my head. Now let me get this straight you have just diagnosed me with a disease and it is all in my head? I went from “why me” to really angry! I was angry, confused, sad beyond belief and nothing was making any sense.
When I got out of the hospital I was armed with an $800.00 monthly prescription fill, living on my own, attending college and worried about my future! I remember sitting on a park bench outside the pharmacy and crying. I cried a lot. I was overwhelmed, alone and did not know what to do.
My college years were filled with hospital stays, aches, pain and many bathroom trips. At that time and I don’t know how I ever managed I had three jobs, school, placement and rent to pay. I learned very quickly that if I did not eat or drink anything all day long that I could get through my days pretty much washroom free! This was not good although I could maintain control of bathroom trips, I could not manage the pain and I had a lot of cramping and a painful stomach most of the time and anal abscesses over and over that required painful surgeries and VON nurses coming to my home. I was a horrible person, not very friendly and cheeky with Nurses to the point no one would come to my home to help with the daily packing to allow the abscesses and fistulas to heal. No one suspected anything because the prednisone kept me plump and my moods were to the point of euphoria most of the time. But I was an emotional ticking time bomb because of my own fears and stress and the combination of drugs, especially prednisone. One little thing would set me off. It was horrible. By the time 2nd year of college hit I had lost most of my friends.
Although it took me 4 years instead of 2 to finish college, I did it and no one could take that away from me. From there I took on a full time job during the day and was a successful DJ at night. Now you are probably asking yourself how the heck could I do that; a full time day job and a part time night job? Back then when the urge would strike I had long playing records (oh did I say that? I am so aging myself) and would run to the loo. Again it was not too often as I would not eat or drink on the days I worked evenings to ensure no issues.
During that time I met my first life-partner and had to go through the emotions of sharing my disease with him. There really was not much involved other than pain, gas, and bathroom trips. The drugs I was on at the time gave me false energy and weight so I did not look that sick. I remember one of the first times I was explaining my disease to him, he went and got me a pillow to sit on.. so cute.
We were together for 11 years and in that time we had a beautiful daughter and a disease that would not allow it’s clutches to loosen. I was in and out the hospitals and on so many different drugs and nothing was working. I remember when I was pregnant I was deathly afraid my daughter would be born deaf because my stomach was so loud with grumbling and gas all the time. I had a pretty good pregnancy with no flare ups, except for one scare; I had low amniotic fluid, which I corrected by taking a multivitamin drink at the time I think It was Ensure. When it was time to give birth, I was induced due to a condition of preeclampsia but everything went ok and I gave birth to a beautiful baby girl who was not deaf.
I would have to say that this is when most of my troubles began. I suffered with postpartum depression although I did not know what that was at the time, and my family life was falling apart and all I could think about was how to kill myself and the guilt I felt wanting to do this and leave a child behind. I had a part time job at the time and I used to pass by this bridge every night, and tried to calculate how fast I would have to go to hit the bridge and never wake up again. As my thoughts were focused on a failing relationship my intestines were becoming more and more agitated I was sick all the time, lost so much weight that it was beyond flattering. Drugs were not working and I could not take prednisone any more due to the constant uncontrollable anger; my daughter called them grumpy pills.
It did not matter what the drug was I always seemed to suffer unbearable side effects. I remember one time I was at the hospital in pain screaming for anything to stop the pain and the Doctor on call was my Gastro’s partner. He suggested Budesonide, claiming I would not have the adverse effects and would do really well on it. When I went into the hospital I was 130 lbs, when I went in for a checkup a week later I was 155 lbs and my face was so puffy I looked like the elephant man, and the doctor had no idea who I was. I said to him do you remember a week ago in the hospital you told me there would be no side effects? I wish I could have recorded the shocked look on his face!
It all came to a head with my first bowel resection. I was so scared and truly thought I was going to die. I remember that just before I went to the doctors my stomach on my right side was so huge that it protruded through my shirt and I had a wet spot from the heat. I was so sick that when I went into to see my GP he called over to the hospital and had me admitted over the phone. Most of it is a blurr but to this day I still remember the pain. The pain from being moved from the O.R. to my room and trying to somehow relax my abdominal that had been sliced open from pelvic bone to just below my breast bone. This type of surgery is so painful to the point of losing your breath when you try to move.
As I improved and was finally released from the hospital I was told that I could eat anything I want and life would be good and I was put on methotrexate. I would get weekly injections in my butt and I was so sick. It got to the point that I would cry every Monday because that was shot day. Every time I was injected I felt like a little bit of my soul would die. I was skin and bones and wanted to die once again. I did not want to live like this I was sick, sad, and useless to society and my family, especially my daughter.
I was always on the couch and unavailable to be a part of my daughter’s life. My daughter school journals were filled with all the activities we did; lay on the couch and watch TV or read a book together. She was so tuned in that when she saw me lying on the couch, she would gather her toys and play next to me for she knew it was a quiet day. She was the most amazing child, I would be in an out of consciousness from the array of drugs I was taking and my little daughter would be cleaning the house to make me feel good. Now if I could only get her to do that now at the age of 18!
I was still working during this time, wearing diapers to work, hair falling out, miserable and dealing with uncompassionate superiors and coworkers trying to make my life even more miserable than it already was. Usually when it comes to Crohn’s you don’t look sick, but I looked sick and still there was no compassion and at the time I was wishing for cancer just so someone would say “how can I help” or feel something towards me. It was a horrible time in my life. Crohn’s is a life- force- sucking- disease and no noticeable scars for people to stare at and gawk at it. Instead they call you lazy, stupid, and turn the other cheek out of sheer ignorance. I had one boss who tried to have my medical privileges revoked because Crohn’s is not that bad according to what she read on the internet. I do not know what site she was reading but it was not what was going on in my life. She had diabetes and it was well controlled and felt that I could do the same are you kidding me? Seriously?
I was at my lowest and I wanted change. I just believed there had to be another way. As I got sicker and sicker I kept in my mind the thought of another way. The signs were there, but I did not realise it. The one sign I finally got was when two people who did not know each other recommended the same Naturopathic doctor and I thought what the heck! I have had every test imaginable done to me, I have objects and fingers in places that no science book would record and since I can’t seem to die what the heck.. What could this person possibly do that has not been already done to me?
Boy was I wrong! Within in a couple of months for the first time in about 6 years I not only felt better I was in remission! She started with my digestion system and explained that if I am not digesting properly, I am not absorbing nutrients, if I am not absorbing nutrients then I cannot feel better; simple right?
I was so intrigued I enrolled in the Institute of Holistic Nutrition in Toronto and became a Certified Holistic Orthomolecular Nutritionist and practitioner. I got better and felt better and lived a pretty normal life drug free. I graduated and went on to become a live cell microscopist and worked for a Cancer and Chronic Illness Clinic in Toronto with a Naturopathic and Chiropractic doctor who brought people to a state of wholeness and wellness from Cancer and other illness such as brain tumours and Multiple Sclerosis. It was such a privilege and honour to work with him because I truly got to see how the right nutrients, detoxification and food could not only bring that person back to wellness but to thrive and be a part of their families once more.
During this time I was still working on my own healing from Crohn’s and my life although very happy there was an immense amount of stress in my life. And the ghost of Crohn’s past came once again to haunt me. My scarred bowel was giving me so much trouble that I had to have it once again cut out. I knew there was a problem because I was unable to eat, throwing up anything I did eat and I was in a state of Ketosis. I knew I was in serious trouble when I woke up and all of my muscles were twitching and contracting… scared me silly because I knew my heart is a muscle and that is something I was not prepared to mess around with. I was in ketosis so bad that I was trying to find something sweet to bring me out of it. Of course at this time I did not have any sugar or honey and had to beg the neighbour for a table spoon of sugar-it worked and I took off to the hospital and bowel resection number two!
I got out of the hospital and then had to book a hernia surgery for a year later. In this time, I got married and was waiting for a U.S. visas for my daughter and I. I had my surgery and left the country 3 days later.
I was married living in the US surrounded by beautiful mountains and palm trees life was good and I had all of these visions for an awesome future. Not only did the economy come crashing down so did my hopes dreams and visions. Life was not what I thought it was going to be. I could not get my business running, my family life was a mess and I was unhappy and soon everything in my life became a pain in the ass. My husband was a pain in the ass, my kids were a pain in the ass, hell my cats were a pain in the ass and my health deteriorated and I did not see the signs until it was too late. Guess what I got? The biggest pain in my ass! For the first time in over 20 years I had an anal abscess. I had it lanced and hoped for the best. The Gods were not in my corner. I wound up in the hospital in unfamiliar territory this time, worried about my health and how I was going to pay for this as I was not in Canada anymore (Universal healthcare)!
I had some form of surgery to open up the abscess and an implanted tube with a ball to help the abscess drain and heal. I had never seen anything like it. I rather liked the technology as this way did not involve slicing my entire but cheek open and then let it heal from the inside out that would involve nurses and packing-that did not go well for the first. But for some reason I could not go home. There were more tests to come.
I remember I was getting one of several CT scans and this one involved injecting fluid up my rump. Just as I was about to get off of the table I had a gushing of fluid come out through my vagina…. My heart sank. I had no idea what was going on but I knew it was not good. My over processing worried mind was interrupted by the doctor who told me I had a fistula that broke through the vaginal wall. I cried. I remember years ago doctors talking about this and how important it was to take care of fistulas and abscess right away and here I was living a new nightmare.
My mind was reeling I had never felt so scared in my life. This trumped any fear I ever had. What did this mean; kidney catheters? Never making love to my husband again? What? Trying to muster what little strength I had, and I needed more, the doctor explained I would need a temporary colostomy in order to allow the vaginal wall to heal. A colostomy….a bag? I remember in my darker days my doctor offering this as a way to relieve my problems and I flat out refused! But now it was a reality…. Both my husband and I cried… a lot!
I had that colostomy for 11 months and I can tell you I did not like it. I was reacting to the tapes, endless rashes, fungus, yeast infections, it was a night mare. I even had the bag burst during a meeting. I really did not see how this was the answer to managing Crohn’s disease for those who chose this course.
I went into a deep depression once again as my surgeon said they were not going to reverse it due to me having a history of Crohn’s I had to get the approval of a gastroenterologist. Once I mustered up the courage to go see one, I had enough strength to stand my ground and make it quite clear it had to be done my way to which he replied he could not help as it is not his scope of practice. I almost gave into to taking drugs to have this removed. I was really depressed, and felt worthy of nothing, my ego was bruised beyond repair, I had become withdrawn and self-conscious and could not take on one more battle. But when he replied that I had to be on drugs for the rest of my life; I found my strength and courage to fight and this time it was to the finish.
I had gone ten years without medication, and did not have active Crohn’s. Yes I had a bowel resection but that was due to scar tissue again not active Crohn’s; baffled the doctors really.
I remember when I went into to see my Gastro in Toronto he did tests, no active Crohn’s but I was taking a barrage of natural supplements and herbs ect. I had brought the list with me. My doctor was flinging it around and said technically you should be on my operating table however if this is working then keep going. I had the Crohn’s under control but I could not do anything for the scarring.
So here I was in a similar predicament; the x-rays and CT scans showed very little Crohn’s activity in fact it was not enough to warrant medication and no one offered any to me-I did not even have to refuse it… it was never offered! Here is what I came up with. I was so angry that the only resolution was drugs to remove the colostomy that I made the Gastro a deal. In 4 months’ time I would have a colonoscopy performed by him; if I had any inkling of Crohn’s I would take the medication and the reversal.
If there was no evidence of Crohn’s disease I would have his approval for a reversal and no medications. This was the biggest incentive to finally heal myself of this dreaded disease. And on that day 4 months later I went in. I was so nervous… more nervous for this than any other surgery I ever had… a lot was at stake, including my belief in the fact that my methods can give you a life Crohn’s free! And I did it! No evidence… and the biopsy came back the same!
I was so elated I cried and cried, cried tears of joy and tears of relief that it was finally over.. I have been validated… I can and did this and cried for the long journey, the fights, the triumphs, the setbacks and the endless nights and days of pain, and lost days with my family…. I let everything out that day and I have not looked back until I took the time to share this with you. Thank goodness I kept journals, because most of this I have forgotten because I do not need it in my life any more. I had to go through my journals and relive it to really get my story out.
My story did not happen in one night. My healing did not happen in one night. My journey has been a long road but here is my message to you; don’t give up!
Keep trying and if one thing does not work, try another, and then another and another! I was fortunate to have the most amazing Naturopathic Doctor in Toronto and I worked with her for 5 years! As much as I would love to say that I owe my life to her, she would say “You did the work Karen… and I am proud of you!”
You can heal from Crohn’s disease or live a life pain and symptom free... what counts is the decision to seek out what will work for you and never give up!
Connect with people on Chronology who have done the same as I. I know Pat Leger has also done the same as I and his journey is completely different than my own. And I know of others too. When you hear of someone who has healed themselves, don't debunk it, call them names or put them down. Instead connect with them. Listen to their story, what they did and how they did it. Be open and learn from them. If there is one thing I have learned along my journey and have learned from those who have healed is they want to give back. They want you to feel as good as they do. They want to share in your joy of feeling good.
I know it motivates me too. I know that of course I have a practice and a career in helping others however, there are people who have contacted me and I have encouraged them to seek the right care in their country, province and state. All I ask for in return is to keep me posted of their progress. I seriously get high off their energy and happiness! It is a bit selfish, but I love the energy and the happiness because it makes me feel good too!
You too can have the same, all you need is the will and determination and the Universe will provide the way. You just need to have an open mind and not give up!