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Guest Book: Joshua’s CD Journey

December 6, 2010

So a little while back I got an e-mail from someone named Josh. He wrote to tell me how this blog inspired him and how it gave him some information that he had not been able to find elsewhere. He also talked about how he identified as a gay man and how hard it was for him to accept his new altered life. The things he was saying literally brought tears to my eyes, because it brought back those same feelings I was going through and I could understand he meant exactly.

We have e-mailed each other quite a bit since, and I’m happy to say, I now have a fellow Gay Digesting friend over in Australia! Here is his story:

My name is Joshua, I’m 20 years old and I was born in Brisbane, Australia. I was diagnosed with Crohn’s when I was 11 years old and over the last 9 years I have traveled a rough path to be where I am today. I have learnt a lot about life and myself and come out stronger. I have had plenty of opportunities to recount my story but it is only now that I have the enthusiasm to do so. My story may not be a tragic tale of pain and anguish conveying a great sense of courage and inspiration but it is my story none the less.

November 2002 – April 2004

In November 2002 I saw my local doctor about a painful boil that I had in the unfortunate area of my anus. I was told that with a course of antibiotics it would heal on its own within a couple of weeks. By the time December arrived the boil had only become more painful and swollen, so the doctor prescribed me yet another course of antibiotics for it to heal on its own or it would need to be popped the next time I came in. On Christmas Eve it burst and it seemed that it would all sort itself out. A few months on the abscess had not healed and continued to leak pus. The next visit to the doctor had me referred to the Gastroenterologist at the General Hospital. The doctor explained that I had an anal fistula that would require me to go under a general anesthetic to have a seton stitch thread through the fistula and secured to allow the wound to drain and then heal properly. After several months the stitch was removed under another general anesthetic with the hopes of the abscess finally healing. At this time the doctor noticed that I was suffering from growth failure and along with the anal fistula and family history suspected I may have Crohn’s Disease. The hospital had insufficient equipment to perform a Colonoscopy on me as I was too young and small so I was refereed to the Royal Children’s Hospital in Brisbane. After the Colonoscopy, the results confirmed that I did have the disease and I began taking Azathioprine to control inflammation. Many months on the fistula saw no improvement and it brought me back to the doctor who then advised that I under go a procedure called a Lay-open of fistula-in-ano. Under general anesthetic the fistula was cut open as well as a portion of the sphincter muscle. Over the next month the wound had to be packed daily to ensure that the wound healed from the inside out. The wound took another 2 years to heal completely but at long last the fistula was finally gone.

April 2004 – January 2008

Over the next 4 years I continued seeing the doctor at the hospital every 3 months as I was experiencing stomach pains throughout the day. To help with the discomfort I continued with the Azathioprine and started taking Prednisone. The new medication caused a couple of side effects that resulted in a constant outbreak of severe acne and made my face start retaining fluid and caused it to swell up all the time. Things didn’t change much over the following years and in time I stopped seeing the doctor at the hospital as often and instead went to my local doctor to see how the medication was going. As 2008 began the pains I was having began getting worse especially in the evenings. I was exhausted all throughout the day and I was having terrible lower back pain on the right side. The doctor increased my medication to see if anything improved.

January 2008 – April 2008

I remember the night I had my major flare up very clearly. It was 2 o’clock in the morning when I woke with pains in my stomach. I took some pain killers and went back to sleep. I woke again at 6 o’clock, the pain killers had done nothing and the pain was becoming unbearable. I staggered upstairs to my father and he drove me to the hospital. I spent the next 3 hours in the waiting room curled up on the seat waiting to get in. More urgent patients were being attended to and the doctor surgery was open so my dad made an appointment to see a doctor there. Once we arrived the pain was even worse and I was trying real hard to keep myself together. The doctor said it could be the Crohn’s flaring up or something wrong with my appendix. She referred me to another doctor at the private clinic but that was in another few hours so she prescribed me some real strong pain killers before I went home. As I got to the top of the stairs at home the pain became too much and I collapsed on the floor and my dad had to help me to the couch. I downed the pain killers and waited desperately for them to kick in. While I waited I got the worst of the pain. It’s hard to describe the feeling. It was like being stabbed with a hot knife. At that point I remember banging my fist on the side of the couch and thinking to myself “I want to die.” That had to be the most terrifying experience of my life. Cramps came and went and eventually the pain killers began working and I drifted in and out of sleep. I woke 2 hours later and we drove to the private clinic. There I was told the exact same thing and sent back to the hospital. I spent another 3 hours in the emergency curled up on the seat still in pain in spite of the pain killers. When I finally got in I was pushed in on a wheel chair because it hurt so badly to straighten my legs out and walking had become unbearable. Once in, I was given morphine right away. After the hours of waiting in pain that was such a relief. It was about this time I started losing track of time. I don’t know how long I was in that bed. I had a number of scans done and at some point wheeled into a ward.

Another 4 days I was kept on morphine while the doctors tried working out what could be wrong with me. On my 4th night in hospital the intense pains came back and my morphine was increased while I had another series of scans during the middle of the night. All I can remember of the following day was a doctor telling me I was very sick and I would be going under anesthetic and there was a chance I would come out of it with an Ileostomy. Before I went to theatre the stoma nurse came and saw me and explained what an Ileostomy was and used a pen to mark on my stomach where the stoma would be formed. While being wheeled away I remember running my hand over my stomach wondering how it would feel with a bag attached to it and how my life would change. Once they were inside they found that the inflammation from my Crohn’s had flared out of control and my large intestine had perforated. So the Ileostomy was definitely necessary.

The next 2 weeks saw me in bed most of the day and night recovering from the infection that I received from the contents of my digestive track leaking into my body cavity. I was in a fair amount of pain and I self medicated with morphine through a pain pump as often as I could. I was visited by the stoma nurse a number of times so she could teach me how to change my pouch and get more supplies to change the pouch once I was home. Gradually I regained my strength and got up for the first time. At first it was a great struggle just to slide out of bed. As well as having the intravenous drip, a catheter and abdominal drain my thighs had swollen up from the medication and they were huge and heavy and I needed a nurse to lift my legs for me at first because they were so heavy and I was so weak. At the end of the 2 weeks I was strong enough to go home and once we got my medication and supplies organized I was discharged.

It took another 2 months to fully recover from the major surgery. My life had been changed profoundly and it took some time to adjust. The first few weeks out of hospital were very stressful. I had a lot of trouble changing my pouches at first and had to change them 3 or 4 times a day because they kept leaking. Once I realized I was stuck in a routine of getting up late everyday, sitting around doing nothing the rest of the day and going to bed with thoughts of low self worth I knew it was time to at least try get on with life. I decided the best way to work my way out of the rut I had gotten myself into was to go back to school and keep my mind busy. I had missed a lot and the school advised me that it might be best to finish the year doing only half my subjects so that my grades wouldn’t fall with the added work load and finish the other half the following year.

April 2008 – January 2010

Life began to regain some of its previous rhythm and for the rest of the year school work provided the distraction I needed. Of course there were a lot of people who wanted to know why I was absent for so long and each time someone asked I made up an excuse that would cover me but in the end I don’t think anyone believed me and they got the feeling that I was uncomfortable discussing it. I don’t know why I didn’t ever tell anyone now. I guess that I thought people would think or act differently around me had I told them or that by not telling people I wouldn’t have to think about it anymore than I had to. There wasn’t a day that I didn’t stress over the pouch that was concealed under my clothing. Whether at school or out with friends I was constantly worrying about when I would have the opportunity to get to a bathroom and empty my pouch before the bag became visible under my clothes or the unfortunate occasion it began to leak. Before I knew it life began revolving around my Ileostomy and everything I ever planned was with the pouch in mind.

Eventually my friends graduated and moved on to university while I stayed behind to finish school. The following year went much like the previous. My self esteem continued to fall and I didn’t even realize just how much I had developed a self loathing for my body. While at school and on the street I would check out guys and feel incredibly inferior because I would never be as attractive and confident as they appeared to be. This was a significant time in my life that was made harder by the events of the last several months. I had only just accepted my sexuality after many years of suppressing it and pushing it deep down inside me where I didn’t have to worry about it. I began embracing my new found self and found all my thoughts about guys and sex where altered by my body and the scars that I now had with me. I didn’t have a clue how sex would ever go down but I knew there had to be some considerations that would need to be taken into mind having a digestive disease and any risks that sex could pose on my health. I would wonder all the time if there were other gay men with digestive diseases and I knew there had to be many others like me but after searching the internet and finding nothing I felt alone in the world. At this point I began to believe that I would never have anyone and be doomed to loneliness for the rest of my life after only just finding this part of myself. The only thing that got me through some of the worst times was knowing that there were people who were in far worse situations. In times of despair I thought about how lucky I truly was and found condolence in my own situation. Most of all I realized how much I took my health for granted.

About half way through the year I had another colonoscopy and the results indicated that the inflammation had cleared up a lot since the major flare up and the surgeon was confident that the risk of another flare up would be minimal and was willing to reverse the Ileostomy. As you can imagine I was all for it and would have said yes then and there but I needed time to think on it. The rest of the year I continued with thoughts about the reversal. If I did decide to go ahead with it I would have to wait until I finished school of course. The only thing I worried about was having the surgery and then there being another flare up soon in the future. I knew in my mind that I would get it done. I had been in a state of constant misery and I saw this reversal as the way out. As school finished and I finally graduated I returned to the doctor and we scheduled the reversal and he went over a few things I could expect from the surgery. He explained that to ensure my intestines healed back together properly they would remove most of what remained of my colon that was still inflamed that might present complications if they did not.

January 2010 – November 2010

As my admission date approached I grew nervous and excited and the day before I photographed my stomach with the pouch both on and off. The following day I was admitted and remember very well the feeling of excitement right before I went under. For 2 years I had this pouch on my stomach and it had made my life so stressful and it would finally be gone. I woke a few hours later and the surgeon said that everything went well and I was back together again. I spent 1 week recovering this time around and just like the last time I was miserable in there but it was a lot easier this time because I wasn’t incredibly ill before the surgery. I was in very little pain and only used the pain pump a few times in the first couple of days. It took awhile for my system to kick in and a few hours after my main meals my stomach had to be pumped through a nasal gastric tube until I began having bowel motions. It took most of the week but my body eventually started working again. I had lost a lot of control of my bowls over the last 2 years and it took about a week to stop having accidents in the middle of the night. Because I had told most of my close friends before the surgery what I had done 2 years previously and explained the reversal I had company during the evenings I was there which made the boredom a lot easier to cope with.

I got home after being discharged and settled in for another week or so recovering at home. Within days I was feeling back to normal and only had mild pain and within the week I was feeling in perfect health. I was happier than I had been in a long time. But within a few weeks I realized that somewhere along the line I got the idea that a reversal was going to solve all my problems. Within a few months life was just as it was for me before the reversal but without the pouch. I don’t know what I thought would change but I quickly realized that the Ileostomy was not as much a burden as I thought it was. There is no doubt in my mind that the reversal has made my life easier and I’m so grateful that I don’t have to stress over all the things that I used to. I’ve been healthy since and only experience the mildest pains once or twice a week and a recent Colonoscopy shows that inflammation is at a minimum.

Almost 12 months on I’ve been enjoying life as much as I possibly can being bag free. I’ve learnt a lot in the last few years, not just about myself, but life as well. I know that my battle with Crohn’s will continue till the day I die and what I’ve been through over the years may happen to me again and maybe even something worse can possibly happen one day. But coming out of this on top has made me stronger. I still struggle with body image and I still maintain the same mind set a lot of the time. I have been left with 4 different scars on my body: a large vertical one that runs down my front, a short but thick horizontal one on the right side of my stomach where the stoma was and a smaller round one above that where I had a stomach drain, and the last being a large missing portion of my anus. I still see them all as ugly, unattractive and a turnoff but they have taken on a new meaning in the last year. They have become symbols of what I’ve been through and a reminder that life can throw anything at you at anytime. 

I try my hardest to change my way of thinking to ensure that I’m heading in the right direction to become comfortable in myself and live my life to the fullest extent. Those who I have told my story to have praised me on the strength I showed and tell me had they been in the same situation they could not have done it themselves. I drew my strength from those closest to me. My father was there by my side every step of the way over the past 9 years and he will never know just how much that helped me through everything. Even my friends, even though they never knew at the time what I was going through they made life worth living even at the worst of times. Writing about my battle with Crohn’s has brought back a lot of the emotions I have experienced over the last 9 years and I know they will always affect me. I can’t change what has happened in my past but I can move on from it taking away a lot of life experience. I know I may well be significantly affected by Crohn’s again one day in the future but I’ll deal with that when and if it does happen and until then I have a lot of living to do.

-Joshua

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One comment

  1. Thank you for providing a very useful website as a gay man I found very little advice on what I can and can’t do regarding sex until I found your web site.
    Up until 26th January 2011 I was 100% fit and had never even spent a night in hospital. I woke up in the morning with mild stomach pain got ready to go to work as normal. However the pain began to get quite bad so a quick trip to the doctors and an examination I was told that I had a grumbling appendix and I was given some pain killers and told to go home and rest which I did. As the day went on the pain increased so buy the time my partner came home I was rolling around in agony we returned to the doctors and saw a different doctor he took one look at me and he rushed me to hospital. I then lay on a bed in agony for 4 hours till a doctor saw me! Again once I had an initial examination suddenly things started to happen and I was the most popular person on the ward. At about 3 in the morning I was told I had a perforated stomach and they need to operate ASAP. My consultant came and talked me through the operation. So for the rest of the night I had various tubes and needles inserted in every available hole. I was first into the operating theatre in the morning and expected to be out mid morning. Nine hours later I came round in recovery to be told that I had diverticular disease and had just gone through a major operation where they had to remove part of my colon and had created a Stoma/ileostomy. I just acknowledged the doctor not realising what she had just said to me. It wasn’t till some 24 hours later when my stoma nurse came to see me and stated to show me samples of different bags, I asked why are showing me these bags? It was then that the penny dropped. (I didn’t know that such things even existed total ignorance on my part) I was devastated suddenly my whole world came crashing down. As a gay man who had a very healthy and active sex life. The world suddenly became a very dark place. As far as I was concerned my life had just completely changed and I was in shock. Luckily my partner of 5 years appeared and he has been absolutely fantastic and has supported me 100% he was initially better coping with changing the bag than I was. However we are both very cautious regarding sex and so far have taking things very carefully. I hope to be able to get the Ileostomy reversed in a few months time providing my colon had healed. This I cannot wait for If I told that I can’t have a reversal I don’t know how I’ll cope. Until then no beach holidays gyms or sauna’s for us!
    Keep up the good work
    Brian



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