sawdust
Moderator
I have recently relapsed and have been trying to keep up on, seemingly, all the new sorts of information out there regarding Crohn's since I last looked. I have been well for a number of years, which was a period of time where I decided quit reading up on the disease, to not look at the pictures, to not read of others’ suffering, frustration, tests, nasty medications, surgeries, and pain. While I’m not entirely comfortable sharing my story here, I have found this forum and have certainly benefited from the information here. The new member introduction stories especially have shown me similarities and differences between my experiences and yours, collectively, that have caused me to feel better about some things and to not feel so different or alone in this for others. I hope that my story here can help someone else, even in just the slightest of ways.
I was diagnosed with a mild-to-moderate case of Crohn's seven years ago in my late 20s. I got my first flare during a stressful time at work, but the pain was more than butterflies, anticipation, or upset stomach. I couldn’t understand any of these symptoms well enough myself, let alone explain it sufficiently to friends and family. I can still picture myself on the phone to my family doctor, doubled over in pain, looking down at my belt dangling in the loops, pants unbuttoned, and with a painful midsection that no longer fit in these pants either. I had lost about 20% of my weight, but my stomach grew and grew. I had seen my doctor a few times about this pain and vomiting before, but everything we had tried to that point was related to stress, ulcers, acid problems, or other maladies that are probably much more common or likely, but also not helping me.
I was referred to a GI doctor, who put me through the battery of tests we all know and love. From the beginnings of my pain to my diagnosis, it was about a year through all the “let’s try this,” “don’t eat that,” and “what about this?” Don’t get me wrong. I don’t blame the doctors and I understand that diagnosis is often a process of logical elimination, and that for something as “rare” as Crohn's, it’s not at the top of the picking order. At the time, I had no idea what was the matter with me, and in fact, that process of elimination went from common, minor inconvenience kinds of possibilities, to much more worrisome, or even life-threatening possibilities. The more time and tests that went by, the more concerned I got. I was asked a number of times to rank my pain on a scale of 1-10, but I didn’t know how to answer this question, usually picking some arbitrary number in the middle or relating it to some previous number I had given about the pain. All I knew for sure, that this was the worst pain that I had ever experienced in my life. Was this as painful as getting shot? Giving birth? A terrible burn? I wasn’t sure, and I always thought those things would hurt more, but I never knew how to answer that question based on what I thought more pain might feel like.
By the time I got a diagnosis of Crohn's, I was largely feeling better already through the time that had passed and revised diet. I started taking Pentasa and started brushing up on the information about this disease I had never heard of before. I had good days and bad for a while, but the bad were never like I had before, and they became fewer and fewer, as I really tightened down my diet, kept a food diary, and really began to learn what worked, and didn’t work, for me.
In the previous year, however, everyone knew I was sick, I missed some work, and especially family and close friends had seen me at some point when I was off somewhere doubled over in a tight little ball wincing away the pain. I had told some of them about the vomiting, the cramping, the blood, the tests, the nasty stuff I had to drink, the preps, the diets, etc, and now I had something to tell them that I wasn’t really interested in sharing with most people. And for those I did want to tell, I was largely unable to explain to them in a way they could understand. Like my 1-10 pain scale experience, I think my explanations reminded them more of the time they ate one too many tacos or how bloated they were after Thanksgiving dinner. While their understanding may not have been that short of the truth, I never felt like they understood the way I thought I was explaining things. These were people who had sacrificed on my behalf over the past year; people who took me for procedures, loved me, called me, had revised their schedules, dealt with my newly found unreliability and unpredictability in response to what I could or couldn’t do that day. I wanted them to understand, but I don’t think that happened like I thought it might.
And so, I became the “sick guy,” the already skinny guy who lost all that weight, the guy who takes 20 pills a day, and the guy who went to the doctors every other week. “How’s it going?” became “how are you feeling?,” and simple, spontaneous gatherings and hanging out with friends became planned events with special menus, restaurants chosen according to their compliance with my diet, despite the fact that I know people aren’t particularly fond of that food. I was the guy who the pharmacist didn’t even have to count out his medicine – they just put his label right on the bottle from the manufacturer, and I didn’t like that I felt that everyone was sacrificing on my behalf. Despite feeling better, I was surrounded by reminders that I was sick. People reminded me every day and I didn’t want to be that guy anymore.
And so I was determined not to be. Feeling better, in conjunction with a much better understanding of the diet that works for me, I stopped taking my medicine and continued to “normalize” my diet with exception of very few foods. I felt great – completely normal – for six years. I went to work reliably, I traveled, and lived virtually pain-free for a long time.
Fast forward to two months ago, when I became severely constipated. I had had bouts with constipation here and there before in my life, but this was worse than anything I had ever experienced before – truly terrible. I eventually got that under control with over-the-counter type things and vowed that my low fiber diet would never do that to me again. I had felt so good for so long, that I had no thoughts whatsoever about what changing my diet might do. It was wonderful for a while; salads, fruits, vegetables – raw even!, wheat bread, grain this, and beans that -- all the things I had missed so much and they tasted so wonderful! But, of course, this turned out to be a very bad idea.
The pain returned, I had other symptoms that I knew what it was almost immediately, and lost 10 pounds in two weeks. At first, I tried to avoid going to the doctor, hoping I would just kind of snap out of it, learn my lesson, and get a reprieve from my mistake, but my energy levels became so low and the pain was worse than I had remembered. I was coming home from work, falling asleep, awaking the next morning and going to work, sometimes eating little or nothing during the day, and I knew that I needed to go back to the doctor. I am now on prednisone and Pentasa again and am awaiting more from that battery of tests we all know and love and back into this dreaded cycle.
At first I was angry and got depressed, but I am trying to keep a good perspective and have been feeling much better of late – certainly not where I want to be, but markedly improved. My goals are the same as they have ever been: feel good, get off the meds, and use this experience positively over time to help avoid this in the future.
I was diagnosed with a mild-to-moderate case of Crohn's seven years ago in my late 20s. I got my first flare during a stressful time at work, but the pain was more than butterflies, anticipation, or upset stomach. I couldn’t understand any of these symptoms well enough myself, let alone explain it sufficiently to friends and family. I can still picture myself on the phone to my family doctor, doubled over in pain, looking down at my belt dangling in the loops, pants unbuttoned, and with a painful midsection that no longer fit in these pants either. I had lost about 20% of my weight, but my stomach grew and grew. I had seen my doctor a few times about this pain and vomiting before, but everything we had tried to that point was related to stress, ulcers, acid problems, or other maladies that are probably much more common or likely, but also not helping me.
I was referred to a GI doctor, who put me through the battery of tests we all know and love. From the beginnings of my pain to my diagnosis, it was about a year through all the “let’s try this,” “don’t eat that,” and “what about this?” Don’t get me wrong. I don’t blame the doctors and I understand that diagnosis is often a process of logical elimination, and that for something as “rare” as Crohn's, it’s not at the top of the picking order. At the time, I had no idea what was the matter with me, and in fact, that process of elimination went from common, minor inconvenience kinds of possibilities, to much more worrisome, or even life-threatening possibilities. The more time and tests that went by, the more concerned I got. I was asked a number of times to rank my pain on a scale of 1-10, but I didn’t know how to answer this question, usually picking some arbitrary number in the middle or relating it to some previous number I had given about the pain. All I knew for sure, that this was the worst pain that I had ever experienced in my life. Was this as painful as getting shot? Giving birth? A terrible burn? I wasn’t sure, and I always thought those things would hurt more, but I never knew how to answer that question based on what I thought more pain might feel like.
By the time I got a diagnosis of Crohn's, I was largely feeling better already through the time that had passed and revised diet. I started taking Pentasa and started brushing up on the information about this disease I had never heard of before. I had good days and bad for a while, but the bad were never like I had before, and they became fewer and fewer, as I really tightened down my diet, kept a food diary, and really began to learn what worked, and didn’t work, for me.
In the previous year, however, everyone knew I was sick, I missed some work, and especially family and close friends had seen me at some point when I was off somewhere doubled over in a tight little ball wincing away the pain. I had told some of them about the vomiting, the cramping, the blood, the tests, the nasty stuff I had to drink, the preps, the diets, etc, and now I had something to tell them that I wasn’t really interested in sharing with most people. And for those I did want to tell, I was largely unable to explain to them in a way they could understand. Like my 1-10 pain scale experience, I think my explanations reminded them more of the time they ate one too many tacos or how bloated they were after Thanksgiving dinner. While their understanding may not have been that short of the truth, I never felt like they understood the way I thought I was explaining things. These were people who had sacrificed on my behalf over the past year; people who took me for procedures, loved me, called me, had revised their schedules, dealt with my newly found unreliability and unpredictability in response to what I could or couldn’t do that day. I wanted them to understand, but I don’t think that happened like I thought it might.
And so, I became the “sick guy,” the already skinny guy who lost all that weight, the guy who takes 20 pills a day, and the guy who went to the doctors every other week. “How’s it going?” became “how are you feeling?,” and simple, spontaneous gatherings and hanging out with friends became planned events with special menus, restaurants chosen according to their compliance with my diet, despite the fact that I know people aren’t particularly fond of that food. I was the guy who the pharmacist didn’t even have to count out his medicine – they just put his label right on the bottle from the manufacturer, and I didn’t like that I felt that everyone was sacrificing on my behalf. Despite feeling better, I was surrounded by reminders that I was sick. People reminded me every day and I didn’t want to be that guy anymore.
And so I was determined not to be. Feeling better, in conjunction with a much better understanding of the diet that works for me, I stopped taking my medicine and continued to “normalize” my diet with exception of very few foods. I felt great – completely normal – for six years. I went to work reliably, I traveled, and lived virtually pain-free for a long time.
Fast forward to two months ago, when I became severely constipated. I had had bouts with constipation here and there before in my life, but this was worse than anything I had ever experienced before – truly terrible. I eventually got that under control with over-the-counter type things and vowed that my low fiber diet would never do that to me again. I had felt so good for so long, that I had no thoughts whatsoever about what changing my diet might do. It was wonderful for a while; salads, fruits, vegetables – raw even!, wheat bread, grain this, and beans that -- all the things I had missed so much and they tasted so wonderful! But, of course, this turned out to be a very bad idea.
The pain returned, I had other symptoms that I knew what it was almost immediately, and lost 10 pounds in two weeks. At first, I tried to avoid going to the doctor, hoping I would just kind of snap out of it, learn my lesson, and get a reprieve from my mistake, but my energy levels became so low and the pain was worse than I had remembered. I was coming home from work, falling asleep, awaking the next morning and going to work, sometimes eating little or nothing during the day, and I knew that I needed to go back to the doctor. I am now on prednisone and Pentasa again and am awaiting more from that battery of tests we all know and love and back into this dreaded cycle.
At first I was angry and got depressed, but I am trying to keep a good perspective and have been feeling much better of late – certainly not where I want to be, but markedly improved. My goals are the same as they have ever been: feel good, get off the meds, and use this experience positively over time to help avoid this in the future.
Well, it was one of the primary motivations for me before, so maybe it'll work in my favor again. :/
