- Joined
- Apr 29, 2013
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- 79
My Crohn’s Disease Journal
Summary:
Diagnosed with Type C Crohn’s Disease in the fall of 2010
After a round of prednisone, taking Humira 40mg biweekly and Azathioprine 100mg daily
Taking probiotics
Following the FODMAP diet
Experimenting with lots of natural remedies such as vitamins, supplements, and herbs.
Self maintenance of severe fissures
Crohn’s is fairly controlled but not perfect
Side effects and other health conditions persist including regular light inflammation in large colon
No surgeries
Asthma, Allergies, some Eczema
My first symptoms might have started in elementary school, though the full effects would take effect for another 20 years. As a young child was I was often sick in one way or another. My elementary teacher once remarked at the end of the year that when she counted my absences and the absences of the other students, I was not only the leader but had accumulated more than everyone else in the class combined. In addition to regular colds and flu’s I had other problems. Small factors included often having mouth sores including canker sores and cold sores. And as a young baby I suffered with severe eczema which eventually cleared itself. And more related to Crohn’s as a young child I would often get terrible stomach aches. These would happen about once a month and seemed to be related to constipation. They would usually only go away with a BM or a nap. During this time in my life I also had severe and debilitating asthma that often during my bad seasons limited my mobility and ability to do many things although during the good seasons I was more or less normal. This allowed me to live a life where part of the time I was fine and the rest of the time I was partially crippled.
A few years after my asthma mostly retreated, the first signs of my Crohn’s Disease would manifest. I was in university and 21 years old. I got an anal fissure while passing some severely constipated bowel movements. This fissure would not immediately heal and would last almost 14 years. At first that was the only major problem with my intestinal track. I did suffer from monthly bouts of heartburn and indigestion and burping up acid, but I always had a pack of Tums at the house and a couple would do the trick no problem every time. During the years of the fissure, I would often have a hard and constipated tip of a bowel movement and then the back half would be soft and smooth. This hard front part of a BM would often painfully reopen the fissure and usually I had blood on the tissue. I went to the doctor many times for this, all recommended fiber or special stool softeners. Some would kind of help, but sooner or later, it would rip open and again and the blood would run. After many years, the toilet water would be completely red. It hurt and it was my secret. I told nobody, but an occasional doctor. One doctor in 2003 wanted to do a colonoscopy; he explained that long standing fissures could be a sign of other worse diseases like IBD, but I was not about to let a doctor violate me as a man like that. I was 26 years old and as is predictable, it would eventually happen, but not until after I held out for a long time and suffered.
In my late 20’s I started to have strange stools. Often I would get diarrhea, but I wasn’t that upset about it as it seemed to not split the fissure, but still it got worse and actually others appeared but luckily would disappear on their own. By my early thirties I knew I had a problem. I was going to the bathroom at least three times in the morning. This was a huge shift from going every other day as a child. My bowel movements were very painful then. I started to see some doctors about my problem. I was now living in South Korea at the time. The South Korean medical system is very cheap and fast and with normal sicknesses extremely effective, but with more specialized things, it can be problematic. Many doctors would prescribe pills that did nothing or made things worse.
I had started to find that the food I ate would clearly affect my trips to the bathroom the next day. The biggest culprit was wheat and gluten, but from 2008-2010 things were bad, very bad. I had gone little bouts of diarrhea on a weekly basis to having 10 bowel movements a day. I self diagnosed myself as having Celiac Disease and went on a gluten free diet, except that it wasn’t really a gluten free diet and that self diagnosis is often very flawed. My first inklings that I might have Celiac Disease came many years before when I was 23 years old. I had been a vegetarian for a couple of years and would continue to be one for much longer but I noticed when eating meat substitutes made almost entirely out of gluten that I would get diarrhea the next day. At that time, diarrhea was very odd for me so I stopped eating those particular substitutes. Fast forward 7 years and I was okay as long as I didn’t eat a whole pizza, but in 9 years even a single pasta noodle would make me sick. I was going downhill and even though I thought I was on a gluten free diet, I kept on finding out that everything I ate seemingly had wheat in one form or another in it. Then it wasn’t just wheat. Then it was the protein shakes of whey I was taking. I had long been a vegetarian, but mainly eating processed vegetarian food. I hardly ate anything that didn’t have a bag, box, or can around it. After the gluten, and whey, it was all dairy, and then finally soy, and then finally a dozen other things until it just seemed like anything would get me. I had multiple fissures and would lose lots of blood. I must have developed an abscess too because I would regularly get sick with very high fevers of 41C/105F, night chills, sweats, and the rest of symptoms. Finally, one doctor suspected I might have colitis when I explained that I was now going to the bathroom up to 20 times a day. I was referred to a specialist who wanted to do a colonoscopy. I still didn’t want to have one, but by this time I was willing to do anything. He did the test and immediately diagnosed me with type C moderate to severe Crohn’s Disease. This is the type of Crohn’s Disease that is mainly confined to the large intestine and is characterized by many trips to the bathroom each day. He showed my pictures of my large intestine. The whole thing from my anus to my ileum was a wreck. It was terrible to look at. Foot after foot was covered with inflammation, pus and blood, but the ileum was as clean and as healthy as could be. The doctor told me that at least that part was good. After reading more about Crohn’s and comparing my pictures to other’s pictures on the internet I agreed and still agree with his diagnosis, and even though type C Crohn’s is suppose to only be in the large intestine, I do still have pains, sometimes severe in my small intestine and have had an abscess in my mouth that resulted in losing a tooth. I was 33 years old 6’2” and 40 pounds under weight and pale to green of color. It was the fall of 2010.
I was given a cocktail of meds to take. The most important was prednisone 20mg twice a day. I reacted positively immediately. I couldn’t believe how great I felt. The day before my colonoscopy I counted that I went to the bathroom 10 times, the day after 9, the day after that 8, the day after that 6, the day after that 4. After two weeks, I was only going twice a day! On top of that I had real energy for the first time in years. I was eating like crazy and fortunately quickly gaining weight.
I was still following my diet which by this time consisted of no wheat, gluten, dairy, eggs, soy, artificial colors, preservatives, or flavors. That meant I couldn’t eat anything in a package, but since so many foods were now limited to me, I introduced fresh meats back into my diet. This was hard for a couple of reasons. To me food came in packages and could be stored indefinitely, but even more so it was sad to me. I had fully given myself to vegetarianism but I needed something to eat and I didn’t really react to them, and meat was doing the trick. My new rule and the way I came to think about food was if a farmer 150 years ago couldn’t grow it, go into his back yard and pick it and then bring it into the house and make a meal out of it, then I couldn’t eat it. I basically ate only fresh fruits, vegetables, and fresh meats of any kind. I thought I had found the key to controlling my disease. Take some steroids and eat an ancient style of diet.
The doctor gave me more medicine including Azathioprine which started out at 50mg and was increased to 100mg and iron supplements for my severe anemia. It was a good time and I felt so much better. I had been diagnosed with a terrible disease and all that I read about it led me to believe there would be horror stories, but I had already been living a horror story and for the first time in 5 years, actually longer than that, I was feeling truly great. I know a lot of people have bad reactions to prednisone, but I can’t tell if I do; I only feel great on it. Still…. I read lots of terribly things about it and know it’s not good to take, so I have tried to not ever take it again, but I remembered back to my childhood and remember also being on prednisone as a child to help get my severe asthma under control and remember back then how it made me feel like a superman.
For many months after finishing my cycle of prednisone my Crohn’s was more or less in check with just the Azathioprine and my diet which was extremely limited. An example might be a mango, blueberry, banana, and random juice smoothie blended for breakfast. Chicken, carrot, potatoes, and salt soup for lunch. And finally steak and rice for dinner. No sauces, spices, or extra flavorings.
One of the problems was even though my intestines were doing okay, my anal disease was getting worse. I was in so much pain with each bowel movement and now felt like I was passing shards of glass dipped in acid multiple times a day. I had been sent to a specialist for anal disease and he couldn’t do much for me. He tried to prescribe suppositories for this or a gel for that. I had long had most of these treatments before and none worked or would work. The best thing he would give me was nitroglycerin. He said it would help my anus to relax and it would help to heal. He was right, it did, but it came at the expense of terrible headaches as a side effect. It was a choice each day of a pain in my ass or a pain in my head. Eventually, I discovered my first “home remedy”. It sounds ridiculous, but I started putting different things on my anus, anything for relief. Nothing worked, but eventually I found something. It was chapstick. Not just any chapstick but in particular Burt’s Bee’s chapstick. It was one of the original versions and had vitamin E and peppermint oil in it. If anybody has suffered from multiple deep fissures, maybe they can kind of understand how much pain I was in. With each bowel movement blood would trickle steadily out of me until I wiped and stood. This chapstick, hurt like hell when applying it. The peppermint oil went into the wounds and burnt so bad, but I noticed that after 30 minutes the pain that didn’t ever seem to go away except with nitroglycerin would go away, and the chapstick didn’t have any accompanying headaches! The main problem with that was that for the first few days, the bleeding got worse, but somehow it felt like a different kind of bleeding and over all it was definitely less painful so I kept on giving it a chance. Within in two weeks, I had my first bowel movement without blood. It wasn’t all good news. The chapstick was helping, but the fissures were reappearing. I had to apply it after every BM and another time at night. It was gross to put it up inside me and shameful, but it did bring relief. Sooner or later, I would stop using it and they would come back. In hindsight, I don’t think they were really completely healed. My thoughts on the peppermint oil chapstick went like this. One day it was winter time and my lips on my mouth got extremely dry. They cracked, they bled, and they hurt. Then I thought, “great, now I am bleeding from both ends”. And that is when it hit me that dry cracked lips have a lot in common with anal fissures. They are both crack like wounds, they both are on round pinkish skin that meets my regular tan skin on the end of the digestive system. I started to wonder just how much more in common my lips had with my anus. “Could my anus be getting dry and cracked too?” I wondered. My stool movements had long been acidic. If anything could dry an anus out, it might be acid I thought! I then thought about all the suppositories that had special chemicals in them, and they would kind of sort of help a little. I thought maybe it wasn’t the chemicals but the oily binder that was helping. At any rate, I tried the chapstick with extra vitamin E and peppermint oil and it by far was better than anything else. I don’t think it has fixed the root cause, but it does a great job at mitigating the symptoms.
I had been taking notes for a while on what I ate that made me flare and what didn’t and my militant diet worked to control my Crohn’s for six months or so but I would have slip ups in the diet and I would flare some and even though a few days of careful eating would get me back down some, but I didn’t ever go all the way back down, not the way I had been on steroids. The fissures were back and the chapstick which was by far the best thing I had found was doing little to control them, but without it, it was a total mess. I was back again in so much pain with each bowel movement in now felt like I was passing shards of glass dipped in acid not just 2 times but 10 times a day. My anus had turned into a nasty shredded mess. I constantly had to go to the bathroom and I was quickly losing weight again. I was back to the doctor for another colonoscopy, just as poor results as the last and was given a prescription for Humira. By the time I got home I was dying for relief. I was jittery and any fear of injecting myself with a needle was gone. Like a junkie shaking for his next hit, I quickly as I could ripped open the box and jammed the pen into my belly and injected myself, and then I did it again. A double dose to start me off. Again the day before the colonoscopy I had 15 BMs and the day after 10, and the day after that 8 and the day after that 7. In two weeks I was down to 2 or 3 BMs a day, almost always in the morning before work. And one of the best parts was that the chapstick was now working again! When I didn’t use it the fissures stayed the same, but when I did, they were generally healing. After less than a month, for the first time in many months there was no blood on the toilet paper and I passed a BM relatively pain free. I sat on the toilet and cried in my bathroom alone.
Again, all was not perfect. There was a small pimple on the side of my anus. It had been there once or twice before I had thought, but now it was growing and growing. I noticed after each shot of Humira, it would grow more. After three months it was huge. I finally told the doctor about it, he looked at me and told me I had an anal abscess. I was given two choices, leave it and try antibiotics, or cut it open and take antibiotics. He told me though if it was cut, there would be a chance that it would develop into a fistula. I chose to have it opened and drained. It was big and very painful and I needed some instant relief, and it did turn into a fistula. For long after that the abscess would swell and seep after each injection of Humira and usually at least once in between injections. The doctor prescribed a month’s of Flagyl and Cipro after the cutting of the abscess and I noticed that it was generally getting smaller, but after the shots would temporarily flare up. It was a see-saw cycle. After the meds ran out, it was no longer see-saw but that the abscess and draining would just get bigger and worse. I asked for more meds, and after another month it was down to the size of a pimple, but after the antibiotics were done, it would come back. This went on for almost a year until I asked for non-stop back to back prescriptions. The doctor did not want to give them to me but instead wanted to operate, but I wouldn’t give in and he finally would give me the drugs. During this desperate time I also started wetting water tissue with rubbing alcohol and wiping with it. I had also identified where the fissure was inside of my anal cavity, about an inch in and on the upper wall. I would try to get the alcohol soaked tissue up there. When I did, it would burn and I pulled it out with blood spotting. I had thought that bacteria were in the fistula and my body wasn’t clearing it so I tried to help. After 4 months of antibiotics and these alcohol wipes, it seemed as if the outer opening had completely healed. There was no more bump and before where I could feel the swelling of the track, I could no longer. The abscess opening had healed up on the outside into nice purple scar tissue and no amount of squeezing or massaging was opening it up. Likewise the blood spotting on the alcohol wet wipes stopped, but still to this day there remains what feels like an opening on the inside of my anus. I don’t know how much of it is really healed or opened but the outside is no longer is showing noticeable signs of leaking puss or bleeding. It remains that way to this day. I can still feel what seems to be like an opening for a fistula canal inside the anus but can feel no canal swelling or leaking from inside or out. If agitated though, the opening inside can still spot blood.
After many months of Humira, while I was still working on the abscess and fistula but after the healing of the anal fissures, I was still having small problems with my Crohn’s. I seemed to live in a state of mild flare if there is such a thing. Never quite healed, but not really that bad. At this time I just took Humira one shot every two weeks and Azathioprine 100mg daily. I looked and searched for more information on diets and came across SCD but immediately dismissed it as carbs and sugars all seemed fine to me. It was the chemical, dairy, eggs and gluten that were my poisons. I found the diet called FODMAPs and to my surprise it read like a check list of almost exactly what I could and couldn’t eat. I had figured this out all the hard way of trial and error and mishap of what I could and couldn’t eat and now there was a list right before me based on real research, with a real theory, and scientific tests to support its data. I was blown away as the FODMAP checklist was almost a mirror of my own. I then went on to follow the additional guidelines of a few things that I was eating that it said not to and added a few things that it said I could. I was getting better, I went from sometimes having a few BMs a day, to sometimes only one or two. I was really happy and thought I had found the answer, and for a little while I might have I guess. I was especially surprised to find that it said that lactose free milk was okay. For years I had avoided any kind of dairy whatsoever as it would surely cause a terrible flair that would put me back a week, but all of a sudden lactose free milk was okay. I couldn’t believe it. I started to read more about 24 hour homemade yogurt and how it was also lactose free. I had long missed ice cream and yogurt and if I could get one of the two back, I thought that would be a huge gain. I bought a yogurt maker and started to make it and found that not only was it not bad for me, it was actually helping my bowel movements.
I was now on the probiotic bandwagon, a full believer and wanted more of this action. Of course I had read about them before and even asked my doctor for them before, and tried different kinds only to have bad results. I learnt later that this might not have been a flare but a die-off, but all I knew is if I took a pill of probiotics, I went to the bathroom many times the next day. Would anybody want to take it again? Even though many people on the internet said that probiotics were good, I had in the past had bought many bottles and thrown away many bottles. But now, I had some proof they were working, the yogurt was clearly helping me. I was ready to try again. This time I did more research and instead of buying probiotics with the nicest label or ones that were on sale, I did research online for what probiotic was the best for people with Crohn’s. I settled on S. boulardii as it seemed to be popular on the forums and the one least like the rest. It was a yeast not a bacteria and it was said to be able to survive stomach acid and make it to the colon to colonize there where most needed. I tried it and it worked! After many failures with probiotics, I had found two kinds, the 24 hour yogurt and S. boulardii, which were clearly helping. In both cases the day after my BMs were better and after starting S. boulardii, I had my first few strings of many days in a row with only one nicely formed BM. I felt like the beginning of the end was finally here. My turning point had come and I was on the track.
I didn’t feel like my Crohn’s Disease was beat, but through the Humira, azathioprine, strict and militant adherence to the FODMAPs diet, and the new probiotics, I was actually getting this thing under control. The flares were not nearly as often, my BMs were often regular. The anal abscess had healed, the fistula wasn’t bothering me and the fissures when appearing were quickly being healed after a couple of days with Burt’s Bee’s chapstick. I was exercising and gaining weight. In fact, I was getting fat! This was the first time in my life this had happened. When I graduated from high school I was 6’2” and 140 pounds. I was very skinny and lean, but I carried it well. Later my weight would go up to 165 or 175 and even 180 before the Crohn’s came and after Crohn’s took its toll I was down to 145 pounds but unlike before was very sickly looking and didn’t carry it well.
Even though things were kind of in control. I didn’t have it beat. It was 2013. Three years after my original diagnosis. I was already on biologics and over a year and half now I had been on Humira and I wasn’t sure if it was doing anything for me anymore. In the early days, Humira would sooth my Crohn’s and inflammation. The day after a shot, I always felt better, not just a little, but a lot and that would last a few days, but by the time the two weeks were up, the positive effects of the shot had seemingly long since gone away. It seemed like a shot would clear up a flare and gave me immunity to any accident slipping away from my diet for at least a few days in the original months of treatment, but by after a year and a half, I could hardly notice any difference between pre-shot and post-shot condition. That didn’t stop me from taking it mind you. Part of the reason I thought this could be is that my condition was just so good. A lot of the time I wasn’t really in a flare when I took the shot to have it quell in the first place and I didn’t exactly want to intentionally flare myself to see if it was still working and neither did I want to stop it and see if the Crohn’s was waiting to come back with vengeance. I had long been so sick and beaten and psychological and emotionally damaged by the disease that I was afraid of all food that would even potentially give me a flare. I had my FODMAP diet and it was a point of refuge for me as well as the meds. If the regime was more or less working, I wouldn’t try to change it.
But still it wasn’t perfect because a little bit of wrong food outside of the FODMAP diet could still easily send me into a flare. It need only take a bite or sip, sometimes even less. But I had decided now that they were clearly things that I could do that my doctor didn’t know about. When I asked him about FODMAP, he didn’t even know about it. By now it was in many peer reviewed journals and I felt a little disappointed that he hadn’t even at least heard of it. He was a very good doctor, and I know it is hard to be up to date on everything, but still I couldn’t help but wonder, if I had come across FODMAP and probiotics on my own, which made a very noticeable difference in my state of being, almost as much as the meds he gave me did, I wondered what else could I do. Right now his meds seemed to be more important than the probiotics I had stumbled upon, but the most important thing hands down was the diet. Still, without any of the three, I knew I would be worse off. So I set out to find out information on my own. I read through the internet archives, pages, wiki articles, the Crochrane Review, books, and just about anything I could. I had success for stumbling upon a way to manage my fissures, which every website and every doctor told me would be impossible. I was eager to repeat. I started to experiment with lots of other herbs, supplements and vitamins. Not just a little, but a lot. Since being diagnosed with Crohn’s I spent more than a thousand dollars of my own hard earned cash on supplements. It set me back, but I figured if I wasn’t healthy, what good would the money be anyway? If somebody out there was saying it was working, I was willing to buy it and try it. I was afraid that the Humira was no longer working. I had know from reading journal articles that only 25% of people that started Humira would still be finding it effective after one year and now I was at 1.5 years. The next thing left after biologics was 6MP or more steroids, maybe buying some pig worm eggs off of a questionable website. None of these seemed like great or safe options, and if they didn’t work, it was going to have to be to remove my large intestine. I was desperate to get this thing under control for once and for all. I started reading a lot about Crohn’s on the internet how it happens and what causes it. That is where I am now. I’m taking lots of supplements every day, reading, thinking and trying things fairly blindly on hunches, hope, and word of mouth looking for the right combination or key.
Summary:
Diagnosed with Type C Crohn’s Disease in the fall of 2010
After a round of prednisone, taking Humira 40mg biweekly and Azathioprine 100mg daily
Taking probiotics
Following the FODMAP diet
Experimenting with lots of natural remedies such as vitamins, supplements, and herbs.
Self maintenance of severe fissures
Crohn’s is fairly controlled but not perfect
Side effects and other health conditions persist including regular light inflammation in large colon
No surgeries
Asthma, Allergies, some Eczema
My first symptoms might have started in elementary school, though the full effects would take effect for another 20 years. As a young child was I was often sick in one way or another. My elementary teacher once remarked at the end of the year that when she counted my absences and the absences of the other students, I was not only the leader but had accumulated more than everyone else in the class combined. In addition to regular colds and flu’s I had other problems. Small factors included often having mouth sores including canker sores and cold sores. And as a young baby I suffered with severe eczema which eventually cleared itself. And more related to Crohn’s as a young child I would often get terrible stomach aches. These would happen about once a month and seemed to be related to constipation. They would usually only go away with a BM or a nap. During this time in my life I also had severe and debilitating asthma that often during my bad seasons limited my mobility and ability to do many things although during the good seasons I was more or less normal. This allowed me to live a life where part of the time I was fine and the rest of the time I was partially crippled.
A few years after my asthma mostly retreated, the first signs of my Crohn’s Disease would manifest. I was in university and 21 years old. I got an anal fissure while passing some severely constipated bowel movements. This fissure would not immediately heal and would last almost 14 years. At first that was the only major problem with my intestinal track. I did suffer from monthly bouts of heartburn and indigestion and burping up acid, but I always had a pack of Tums at the house and a couple would do the trick no problem every time. During the years of the fissure, I would often have a hard and constipated tip of a bowel movement and then the back half would be soft and smooth. This hard front part of a BM would often painfully reopen the fissure and usually I had blood on the tissue. I went to the doctor many times for this, all recommended fiber or special stool softeners. Some would kind of help, but sooner or later, it would rip open and again and the blood would run. After many years, the toilet water would be completely red. It hurt and it was my secret. I told nobody, but an occasional doctor. One doctor in 2003 wanted to do a colonoscopy; he explained that long standing fissures could be a sign of other worse diseases like IBD, but I was not about to let a doctor violate me as a man like that. I was 26 years old and as is predictable, it would eventually happen, but not until after I held out for a long time and suffered.
In my late 20’s I started to have strange stools. Often I would get diarrhea, but I wasn’t that upset about it as it seemed to not split the fissure, but still it got worse and actually others appeared but luckily would disappear on their own. By my early thirties I knew I had a problem. I was going to the bathroom at least three times in the morning. This was a huge shift from going every other day as a child. My bowel movements were very painful then. I started to see some doctors about my problem. I was now living in South Korea at the time. The South Korean medical system is very cheap and fast and with normal sicknesses extremely effective, but with more specialized things, it can be problematic. Many doctors would prescribe pills that did nothing or made things worse.
I had started to find that the food I ate would clearly affect my trips to the bathroom the next day. The biggest culprit was wheat and gluten, but from 2008-2010 things were bad, very bad. I had gone little bouts of diarrhea on a weekly basis to having 10 bowel movements a day. I self diagnosed myself as having Celiac Disease and went on a gluten free diet, except that it wasn’t really a gluten free diet and that self diagnosis is often very flawed. My first inklings that I might have Celiac Disease came many years before when I was 23 years old. I had been a vegetarian for a couple of years and would continue to be one for much longer but I noticed when eating meat substitutes made almost entirely out of gluten that I would get diarrhea the next day. At that time, diarrhea was very odd for me so I stopped eating those particular substitutes. Fast forward 7 years and I was okay as long as I didn’t eat a whole pizza, but in 9 years even a single pasta noodle would make me sick. I was going downhill and even though I thought I was on a gluten free diet, I kept on finding out that everything I ate seemingly had wheat in one form or another in it. Then it wasn’t just wheat. Then it was the protein shakes of whey I was taking. I had long been a vegetarian, but mainly eating processed vegetarian food. I hardly ate anything that didn’t have a bag, box, or can around it. After the gluten, and whey, it was all dairy, and then finally soy, and then finally a dozen other things until it just seemed like anything would get me. I had multiple fissures and would lose lots of blood. I must have developed an abscess too because I would regularly get sick with very high fevers of 41C/105F, night chills, sweats, and the rest of symptoms. Finally, one doctor suspected I might have colitis when I explained that I was now going to the bathroom up to 20 times a day. I was referred to a specialist who wanted to do a colonoscopy. I still didn’t want to have one, but by this time I was willing to do anything. He did the test and immediately diagnosed me with type C moderate to severe Crohn’s Disease. This is the type of Crohn’s Disease that is mainly confined to the large intestine and is characterized by many trips to the bathroom each day. He showed my pictures of my large intestine. The whole thing from my anus to my ileum was a wreck. It was terrible to look at. Foot after foot was covered with inflammation, pus and blood, but the ileum was as clean and as healthy as could be. The doctor told me that at least that part was good. After reading more about Crohn’s and comparing my pictures to other’s pictures on the internet I agreed and still agree with his diagnosis, and even though type C Crohn’s is suppose to only be in the large intestine, I do still have pains, sometimes severe in my small intestine and have had an abscess in my mouth that resulted in losing a tooth. I was 33 years old 6’2” and 40 pounds under weight and pale to green of color. It was the fall of 2010.
I was given a cocktail of meds to take. The most important was prednisone 20mg twice a day. I reacted positively immediately. I couldn’t believe how great I felt. The day before my colonoscopy I counted that I went to the bathroom 10 times, the day after 9, the day after that 8, the day after that 6, the day after that 4. After two weeks, I was only going twice a day! On top of that I had real energy for the first time in years. I was eating like crazy and fortunately quickly gaining weight.
I was still following my diet which by this time consisted of no wheat, gluten, dairy, eggs, soy, artificial colors, preservatives, or flavors. That meant I couldn’t eat anything in a package, but since so many foods were now limited to me, I introduced fresh meats back into my diet. This was hard for a couple of reasons. To me food came in packages and could be stored indefinitely, but even more so it was sad to me. I had fully given myself to vegetarianism but I needed something to eat and I didn’t really react to them, and meat was doing the trick. My new rule and the way I came to think about food was if a farmer 150 years ago couldn’t grow it, go into his back yard and pick it and then bring it into the house and make a meal out of it, then I couldn’t eat it. I basically ate only fresh fruits, vegetables, and fresh meats of any kind. I thought I had found the key to controlling my disease. Take some steroids and eat an ancient style of diet.
The doctor gave me more medicine including Azathioprine which started out at 50mg and was increased to 100mg and iron supplements for my severe anemia. It was a good time and I felt so much better. I had been diagnosed with a terrible disease and all that I read about it led me to believe there would be horror stories, but I had already been living a horror story and for the first time in 5 years, actually longer than that, I was feeling truly great. I know a lot of people have bad reactions to prednisone, but I can’t tell if I do; I only feel great on it. Still…. I read lots of terribly things about it and know it’s not good to take, so I have tried to not ever take it again, but I remembered back to my childhood and remember also being on prednisone as a child to help get my severe asthma under control and remember back then how it made me feel like a superman.
For many months after finishing my cycle of prednisone my Crohn’s was more or less in check with just the Azathioprine and my diet which was extremely limited. An example might be a mango, blueberry, banana, and random juice smoothie blended for breakfast. Chicken, carrot, potatoes, and salt soup for lunch. And finally steak and rice for dinner. No sauces, spices, or extra flavorings.
One of the problems was even though my intestines were doing okay, my anal disease was getting worse. I was in so much pain with each bowel movement and now felt like I was passing shards of glass dipped in acid multiple times a day. I had been sent to a specialist for anal disease and he couldn’t do much for me. He tried to prescribe suppositories for this or a gel for that. I had long had most of these treatments before and none worked or would work. The best thing he would give me was nitroglycerin. He said it would help my anus to relax and it would help to heal. He was right, it did, but it came at the expense of terrible headaches as a side effect. It was a choice each day of a pain in my ass or a pain in my head. Eventually, I discovered my first “home remedy”. It sounds ridiculous, but I started putting different things on my anus, anything for relief. Nothing worked, but eventually I found something. It was chapstick. Not just any chapstick but in particular Burt’s Bee’s chapstick. It was one of the original versions and had vitamin E and peppermint oil in it. If anybody has suffered from multiple deep fissures, maybe they can kind of understand how much pain I was in. With each bowel movement blood would trickle steadily out of me until I wiped and stood. This chapstick, hurt like hell when applying it. The peppermint oil went into the wounds and burnt so bad, but I noticed that after 30 minutes the pain that didn’t ever seem to go away except with nitroglycerin would go away, and the chapstick didn’t have any accompanying headaches! The main problem with that was that for the first few days, the bleeding got worse, but somehow it felt like a different kind of bleeding and over all it was definitely less painful so I kept on giving it a chance. Within in two weeks, I had my first bowel movement without blood. It wasn’t all good news. The chapstick was helping, but the fissures were reappearing. I had to apply it after every BM and another time at night. It was gross to put it up inside me and shameful, but it did bring relief. Sooner or later, I would stop using it and they would come back. In hindsight, I don’t think they were really completely healed. My thoughts on the peppermint oil chapstick went like this. One day it was winter time and my lips on my mouth got extremely dry. They cracked, they bled, and they hurt. Then I thought, “great, now I am bleeding from both ends”. And that is when it hit me that dry cracked lips have a lot in common with anal fissures. They are both crack like wounds, they both are on round pinkish skin that meets my regular tan skin on the end of the digestive system. I started to wonder just how much more in common my lips had with my anus. “Could my anus be getting dry and cracked too?” I wondered. My stool movements had long been acidic. If anything could dry an anus out, it might be acid I thought! I then thought about all the suppositories that had special chemicals in them, and they would kind of sort of help a little. I thought maybe it wasn’t the chemicals but the oily binder that was helping. At any rate, I tried the chapstick with extra vitamin E and peppermint oil and it by far was better than anything else. I don’t think it has fixed the root cause, but it does a great job at mitigating the symptoms.
I had been taking notes for a while on what I ate that made me flare and what didn’t and my militant diet worked to control my Crohn’s for six months or so but I would have slip ups in the diet and I would flare some and even though a few days of careful eating would get me back down some, but I didn’t ever go all the way back down, not the way I had been on steroids. The fissures were back and the chapstick which was by far the best thing I had found was doing little to control them, but without it, it was a total mess. I was back again in so much pain with each bowel movement in now felt like I was passing shards of glass dipped in acid not just 2 times but 10 times a day. My anus had turned into a nasty shredded mess. I constantly had to go to the bathroom and I was quickly losing weight again. I was back to the doctor for another colonoscopy, just as poor results as the last and was given a prescription for Humira. By the time I got home I was dying for relief. I was jittery and any fear of injecting myself with a needle was gone. Like a junkie shaking for his next hit, I quickly as I could ripped open the box and jammed the pen into my belly and injected myself, and then I did it again. A double dose to start me off. Again the day before the colonoscopy I had 15 BMs and the day after 10, and the day after that 8 and the day after that 7. In two weeks I was down to 2 or 3 BMs a day, almost always in the morning before work. And one of the best parts was that the chapstick was now working again! When I didn’t use it the fissures stayed the same, but when I did, they were generally healing. After less than a month, for the first time in many months there was no blood on the toilet paper and I passed a BM relatively pain free. I sat on the toilet and cried in my bathroom alone.
Again, all was not perfect. There was a small pimple on the side of my anus. It had been there once or twice before I had thought, but now it was growing and growing. I noticed after each shot of Humira, it would grow more. After three months it was huge. I finally told the doctor about it, he looked at me and told me I had an anal abscess. I was given two choices, leave it and try antibiotics, or cut it open and take antibiotics. He told me though if it was cut, there would be a chance that it would develop into a fistula. I chose to have it opened and drained. It was big and very painful and I needed some instant relief, and it did turn into a fistula. For long after that the abscess would swell and seep after each injection of Humira and usually at least once in between injections. The doctor prescribed a month’s of Flagyl and Cipro after the cutting of the abscess and I noticed that it was generally getting smaller, but after the shots would temporarily flare up. It was a see-saw cycle. After the meds ran out, it was no longer see-saw but that the abscess and draining would just get bigger and worse. I asked for more meds, and after another month it was down to the size of a pimple, but after the antibiotics were done, it would come back. This went on for almost a year until I asked for non-stop back to back prescriptions. The doctor did not want to give them to me but instead wanted to operate, but I wouldn’t give in and he finally would give me the drugs. During this desperate time I also started wetting water tissue with rubbing alcohol and wiping with it. I had also identified where the fissure was inside of my anal cavity, about an inch in and on the upper wall. I would try to get the alcohol soaked tissue up there. When I did, it would burn and I pulled it out with blood spotting. I had thought that bacteria were in the fistula and my body wasn’t clearing it so I tried to help. After 4 months of antibiotics and these alcohol wipes, it seemed as if the outer opening had completely healed. There was no more bump and before where I could feel the swelling of the track, I could no longer. The abscess opening had healed up on the outside into nice purple scar tissue and no amount of squeezing or massaging was opening it up. Likewise the blood spotting on the alcohol wet wipes stopped, but still to this day there remains what feels like an opening on the inside of my anus. I don’t know how much of it is really healed or opened but the outside is no longer is showing noticeable signs of leaking puss or bleeding. It remains that way to this day. I can still feel what seems to be like an opening for a fistula canal inside the anus but can feel no canal swelling or leaking from inside or out. If agitated though, the opening inside can still spot blood.
After many months of Humira, while I was still working on the abscess and fistula but after the healing of the anal fissures, I was still having small problems with my Crohn’s. I seemed to live in a state of mild flare if there is such a thing. Never quite healed, but not really that bad. At this time I just took Humira one shot every two weeks and Azathioprine 100mg daily. I looked and searched for more information on diets and came across SCD but immediately dismissed it as carbs and sugars all seemed fine to me. It was the chemical, dairy, eggs and gluten that were my poisons. I found the diet called FODMAPs and to my surprise it read like a check list of almost exactly what I could and couldn’t eat. I had figured this out all the hard way of trial and error and mishap of what I could and couldn’t eat and now there was a list right before me based on real research, with a real theory, and scientific tests to support its data. I was blown away as the FODMAP checklist was almost a mirror of my own. I then went on to follow the additional guidelines of a few things that I was eating that it said not to and added a few things that it said I could. I was getting better, I went from sometimes having a few BMs a day, to sometimes only one or two. I was really happy and thought I had found the answer, and for a little while I might have I guess. I was especially surprised to find that it said that lactose free milk was okay. For years I had avoided any kind of dairy whatsoever as it would surely cause a terrible flair that would put me back a week, but all of a sudden lactose free milk was okay. I couldn’t believe it. I started to read more about 24 hour homemade yogurt and how it was also lactose free. I had long missed ice cream and yogurt and if I could get one of the two back, I thought that would be a huge gain. I bought a yogurt maker and started to make it and found that not only was it not bad for me, it was actually helping my bowel movements.
I was now on the probiotic bandwagon, a full believer and wanted more of this action. Of course I had read about them before and even asked my doctor for them before, and tried different kinds only to have bad results. I learnt later that this might not have been a flare but a die-off, but all I knew is if I took a pill of probiotics, I went to the bathroom many times the next day. Would anybody want to take it again? Even though many people on the internet said that probiotics were good, I had in the past had bought many bottles and thrown away many bottles. But now, I had some proof they were working, the yogurt was clearly helping me. I was ready to try again. This time I did more research and instead of buying probiotics with the nicest label or ones that were on sale, I did research online for what probiotic was the best for people with Crohn’s. I settled on S. boulardii as it seemed to be popular on the forums and the one least like the rest. It was a yeast not a bacteria and it was said to be able to survive stomach acid and make it to the colon to colonize there where most needed. I tried it and it worked! After many failures with probiotics, I had found two kinds, the 24 hour yogurt and S. boulardii, which were clearly helping. In both cases the day after my BMs were better and after starting S. boulardii, I had my first few strings of many days in a row with only one nicely formed BM. I felt like the beginning of the end was finally here. My turning point had come and I was on the track.
I didn’t feel like my Crohn’s Disease was beat, but through the Humira, azathioprine, strict and militant adherence to the FODMAPs diet, and the new probiotics, I was actually getting this thing under control. The flares were not nearly as often, my BMs were often regular. The anal abscess had healed, the fistula wasn’t bothering me and the fissures when appearing were quickly being healed after a couple of days with Burt’s Bee’s chapstick. I was exercising and gaining weight. In fact, I was getting fat! This was the first time in my life this had happened. When I graduated from high school I was 6’2” and 140 pounds. I was very skinny and lean, but I carried it well. Later my weight would go up to 165 or 175 and even 180 before the Crohn’s came and after Crohn’s took its toll I was down to 145 pounds but unlike before was very sickly looking and didn’t carry it well.
Even though things were kind of in control. I didn’t have it beat. It was 2013. Three years after my original diagnosis. I was already on biologics and over a year and half now I had been on Humira and I wasn’t sure if it was doing anything for me anymore. In the early days, Humira would sooth my Crohn’s and inflammation. The day after a shot, I always felt better, not just a little, but a lot and that would last a few days, but by the time the two weeks were up, the positive effects of the shot had seemingly long since gone away. It seemed like a shot would clear up a flare and gave me immunity to any accident slipping away from my diet for at least a few days in the original months of treatment, but by after a year and a half, I could hardly notice any difference between pre-shot and post-shot condition. That didn’t stop me from taking it mind you. Part of the reason I thought this could be is that my condition was just so good. A lot of the time I wasn’t really in a flare when I took the shot to have it quell in the first place and I didn’t exactly want to intentionally flare myself to see if it was still working and neither did I want to stop it and see if the Crohn’s was waiting to come back with vengeance. I had long been so sick and beaten and psychological and emotionally damaged by the disease that I was afraid of all food that would even potentially give me a flare. I had my FODMAP diet and it was a point of refuge for me as well as the meds. If the regime was more or less working, I wouldn’t try to change it.
But still it wasn’t perfect because a little bit of wrong food outside of the FODMAP diet could still easily send me into a flare. It need only take a bite or sip, sometimes even less. But I had decided now that they were clearly things that I could do that my doctor didn’t know about. When I asked him about FODMAP, he didn’t even know about it. By now it was in many peer reviewed journals and I felt a little disappointed that he hadn’t even at least heard of it. He was a very good doctor, and I know it is hard to be up to date on everything, but still I couldn’t help but wonder, if I had come across FODMAP and probiotics on my own, which made a very noticeable difference in my state of being, almost as much as the meds he gave me did, I wondered what else could I do. Right now his meds seemed to be more important than the probiotics I had stumbled upon, but the most important thing hands down was the diet. Still, without any of the three, I knew I would be worse off. So I set out to find out information on my own. I read through the internet archives, pages, wiki articles, the Crochrane Review, books, and just about anything I could. I had success for stumbling upon a way to manage my fissures, which every website and every doctor told me would be impossible. I was eager to repeat. I started to experiment with lots of other herbs, supplements and vitamins. Not just a little, but a lot. Since being diagnosed with Crohn’s I spent more than a thousand dollars of my own hard earned cash on supplements. It set me back, but I figured if I wasn’t healthy, what good would the money be anyway? If somebody out there was saying it was working, I was willing to buy it and try it. I was afraid that the Humira was no longer working. I had know from reading journal articles that only 25% of people that started Humira would still be finding it effective after one year and now I was at 1.5 years. The next thing left after biologics was 6MP or more steroids, maybe buying some pig worm eggs off of a questionable website. None of these seemed like great or safe options, and if they didn’t work, it was going to have to be to remove my large intestine. I was desperate to get this thing under control for once and for all. I started reading a lot about Crohn’s on the internet how it happens and what causes it. That is where I am now. I’m taking lots of supplements every day, reading, thinking and trying things fairly blindly on hunches, hope, and word of mouth looking for the right combination or key.
