I'm 53 and well on my way to having confirmed CD diagnosis. While nothing of significance turned up in the past, I'm sure there were a few signs that I missed that might have lead me to this diagnoses sooner.
I might ramble here as I'm having some issues concentrating. I wrote this on the evening of 12/20/12 and edited it on the morning of 12/21 with a clearer head.
Until eight weeks ago, my diet consisted of a soy protein shake for breakfast with blueberries, salad and apple for lunch and then a typical balanced dinner. Leafy veggies and fiber were a big part of my diet. I don't drink or smoke and drugs were never my thing.
This flare up came on without much of a warning. In 1987 I fell while rock climbing and injured my lower back. I've had pain off and on for years and just handled it. But when this started the pain changed, it became more intense and limited my range of motion. Next, my knee joints and a joint in my right foot starting acting up. Then came the abdominal issues about 4 weeks later. Like many of you, pain in the lower abdomen, the upper right and the left. Given how pain is referred around the GI tract, there was no way of pinpointing exactly where it hurt at any given time, but on my pain scale, it hit an 8. I spent a weekend bent over or curled up in a ball. I believed that weekend I also passed a small kidney stone to my bladder.
Off to the doctor. Given that I had some issues with my gallbladder in 2007, we started there. Looking back, I'll bet this was a small CD flare. Two weeks ago, I had another ultrasound on my gallbladder that showed no stones, but my liver was about a centimeter larger than it was back in 2007. Blood work was run to check liver function. No problems. A HIDA scan was run a week later, but my liver had returned to normal size and everything looked normal. The abdominal pains got worse, heartburn, nausea, stools the color of wheat and they had changed shape. They stared to float and that meant I was not absorbing nutrients from food. My urine got a little darker. My lower intestine became more painful as I tried eating different foods that were not getting processed by my upper intestine. I went back to my GP and he ordered a CT with contrast and referred me to a GI Doc. In the small intestine the GI Doc found what could be some thickening in an area. Next week I get an MRI with contrast and the following week and endoscopy. I've been put on a low residue diet to let my colon get some rest and make sure that if there is a stricture (blockage), that I don't wind up in worse shape. While this is going on, I have had one night of sweats, several times I have been flushed without a fever but feel cold and light-headed, although the abdominal issues have subsided for the most part. At the peak of all this, I had some pain in the lower parts of my lungs when breathing. For those of you reading My Story and being here for the first time, when your guts get inflamed and swell, they push on everything else - Liver, Pancreas, Lungs all get pushed around. And all inflammation results in pain. Of all the symptoms, the light-headed with ringing ears is the worst. It is almost like having a panic attack. I'm concerned about passing out. I find that if I get up and move around, the situation resolves itself but I have to get up slowly to keep from feeling like I will pass out. However, when this happens at night while sleeping, getting out of a warm bed is a drag. At six feet and now 215 down from 235 lbs, I'm not easy to manage when I can't operate under my own power. Almost everyday now, I am exhausted by 1pm. I rally after a short nap, but my clock is screwed up and I find I can't sleep well between 11pm and 2a. This is new as well.
When this first came on I got concerned about cancer, and without the rest of the test results, this is not out of the realm of possibilities, however, there is no history of cancer of the GIT in my family going way back. None the less, I remained concerned and know at this point, my life is going to change. I'm OK with that as I understand and can accept much of it is outside of my control. I use the Serenity Prayer, passed to me by a friend in recovery. I hope that this helps anyone who is facing this for the first time. If you are not inclined to believe in God, assume that there is some form of higher power in the world and speak to your definition of it.
God, grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.
Right now, I'm working on a journal that tracks everything in, out and the resulting pain or lack there of. If my body is still trying to work properly, I suspect food moves from stomach to intestine in about 90 min and gets passed about 30 hours later. Anyone know if this is right? Thanks in advance.
So that is my short story, I hope that others find something here that helps. Should my diagnosis head toward IBD, I look forward to knowing an participating in this community.
Thanks for reading,
Flat Black Dog
I might ramble here as I'm having some issues concentrating. I wrote this on the evening of 12/20/12 and edited it on the morning of 12/21 with a clearer head.
Until eight weeks ago, my diet consisted of a soy protein shake for breakfast with blueberries, salad and apple for lunch and then a typical balanced dinner. Leafy veggies and fiber were a big part of my diet. I don't drink or smoke and drugs were never my thing.
This flare up came on without much of a warning. In 1987 I fell while rock climbing and injured my lower back. I've had pain off and on for years and just handled it. But when this started the pain changed, it became more intense and limited my range of motion. Next, my knee joints and a joint in my right foot starting acting up. Then came the abdominal issues about 4 weeks later. Like many of you, pain in the lower abdomen, the upper right and the left. Given how pain is referred around the GI tract, there was no way of pinpointing exactly where it hurt at any given time, but on my pain scale, it hit an 8. I spent a weekend bent over or curled up in a ball. I believed that weekend I also passed a small kidney stone to my bladder.
Off to the doctor. Given that I had some issues with my gallbladder in 2007, we started there. Looking back, I'll bet this was a small CD flare. Two weeks ago, I had another ultrasound on my gallbladder that showed no stones, but my liver was about a centimeter larger than it was back in 2007. Blood work was run to check liver function. No problems. A HIDA scan was run a week later, but my liver had returned to normal size and everything looked normal. The abdominal pains got worse, heartburn, nausea, stools the color of wheat and they had changed shape. They stared to float and that meant I was not absorbing nutrients from food. My urine got a little darker. My lower intestine became more painful as I tried eating different foods that were not getting processed by my upper intestine. I went back to my GP and he ordered a CT with contrast and referred me to a GI Doc. In the small intestine the GI Doc found what could be some thickening in an area. Next week I get an MRI with contrast and the following week and endoscopy. I've been put on a low residue diet to let my colon get some rest and make sure that if there is a stricture (blockage), that I don't wind up in worse shape. While this is going on, I have had one night of sweats, several times I have been flushed without a fever but feel cold and light-headed, although the abdominal issues have subsided for the most part. At the peak of all this, I had some pain in the lower parts of my lungs when breathing. For those of you reading My Story and being here for the first time, when your guts get inflamed and swell, they push on everything else - Liver, Pancreas, Lungs all get pushed around. And all inflammation results in pain. Of all the symptoms, the light-headed with ringing ears is the worst. It is almost like having a panic attack. I'm concerned about passing out. I find that if I get up and move around, the situation resolves itself but I have to get up slowly to keep from feeling like I will pass out. However, when this happens at night while sleeping, getting out of a warm bed is a drag. At six feet and now 215 down from 235 lbs, I'm not easy to manage when I can't operate under my own power. Almost everyday now, I am exhausted by 1pm. I rally after a short nap, but my clock is screwed up and I find I can't sleep well between 11pm and 2a. This is new as well.
When this first came on I got concerned about cancer, and without the rest of the test results, this is not out of the realm of possibilities, however, there is no history of cancer of the GIT in my family going way back. None the less, I remained concerned and know at this point, my life is going to change. I'm OK with that as I understand and can accept much of it is outside of my control. I use the Serenity Prayer, passed to me by a friend in recovery. I hope that this helps anyone who is facing this for the first time. If you are not inclined to believe in God, assume that there is some form of higher power in the world and speak to your definition of it.
God, grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.
Right now, I'm working on a journal that tracks everything in, out and the resulting pain or lack there of. If my body is still trying to work properly, I suspect food moves from stomach to intestine in about 90 min and gets passed about 30 hours later. Anyone know if this is right? Thanks in advance.
So that is my short story, I hope that others find something here that helps. Should my diagnosis head toward IBD, I look forward to knowing an participating in this community.
Thanks for reading,
Flat Black Dog
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