Regular Joe
Senior Member
- Joined
- Sep 2, 2009
- Messages
- 308
Hi folks,
I'm a new kid on the old block. I'm joining ya'll in the "second peak" at the ripe young age of 51 (today!). Actually got the preliminary news a couple days ago calling what I have "Mild Crohn's Disease". It didn't come as much of a surprise - it actually made a whole bunch of my other medical "symptoms" make a lot more sense.
There is a peculiar irony about finding out that I have CD. I was a friend with a wonderful woman for many years but lost contact for a while. Last year she was diagnosed with CD, and she was hit real hard - extremely severe flare. Somehow we got back in touch, and I couldn't just sit there and watch her suffer, so I jumped in and helped her try to get her life under some control. I read, learned, and asked loads of questions everywhere and got a pretty good "educaction" about Crohn's Disease so that I could be a better friend. We've become best of friends and are on the journey of companionship.
So we were dealing with her flare, which has been pretty stubborn (off and on with no significant remission - once it shut off for six weeks). Suddenly my "regular" movements transform into watery movements, but still at the "regular" itervals - nothing "too much" out of the ordinary. This goes on for about 6 weeks, then out of nowhere, I get clobbered with excruciating upper stomach pain, anxiety coming out of my ears, fatigue, cramps, liquid movement jumps up to 3-10 times, and well you guys and gals know the rest - EVERYTHING else that happens in a "well-defined" flare. The lady-friend starts getting worried, but she doesn't tell me, because she sees the same symptoms.
I'm already scheduled for scoping because of my age, and the GI decides to do the upper scope too. He writes a letter that tells me about GERD and healing ulcers, and gastritis, and I get to the end of the letter and there's this little questionable thing that isn't quite explained - "focal active ileitis", and a "series of shallow ulcers" along the ileum. I didn't recall doing anything out of the ordinary that would bring this about?
I begin to do the "math". I already know that ulcers don't just come out of nowhere and show up in the ileum. I look at "ileitis" and I know that an "i-tis" of any sort means inflammation. So that tells me to subract "irritable" from the formula because there is active inflammation at the end of my small intestine. I also figure into the equation that, since the ileum is inflamed, that it obviously must be swollen. Which adds thickened walls to the formula.
Lets see? (active inflammation) + ("a series of shallow ulcerations") + (thickened intestinal walls) and it's all going on in about the middle of my gut where there is a constant ache, like someone tightening a little screw into the center of my belly. I know the "product" of this kind of math. Both my lady-friend and me are "tiptoeing" around Commander Obvious because nobody mentioned the "C-word" in the letter. I missed the memo that tells me either the "I" stands for "irritable" or "inflammatory".
This week the nurse reads the pathology report and what the doc had written down: "Mild Crohn's Disease" - even before the biopsies were returned. There isn't much else that does this kind of thing to the ileal part of the small intestine from what I understand - except Malaria.
When she read that report to me, I couldn't believe what I was hearing. Did she just say "Crohn's Disease"? You mean that I REALLY have this very same disease my girlfriend has? I recall the acute part of this flare in my mind. I know I didn't imagine this. I now what fatigue feels like. I know what these symptoms add up to. I've just watched someone near and dear to me go through almost a year of this off and on.
I know what her stomach sounds like when I lay my head on her lap. We're at her GI this morning, and my stomach is gurgling loud enough to get his attention. Those aren't "hunger sounds" either. I know what this is about logically, but the "superman" inside me is still sort of in a state of disbelief. You mean I really DO have this? I look in the "throne" this morning and a little red "patch" catches my eye. I put on my glasses, then say "what the hell did I eat that did that?" I remind myself that I know I should never study the stuff. I'm reminded that I really do have this disease.
This didn't just happen over the past three months. Something "happened" about 7 years ago that landed me in the ER. The stomach pain was horrendous - worse than this flare. I ordered those records and read about the "multiple loops" in my small intestine - and the partial obstruction of unknown "itiology". It didn't make sense 7 years ago, but I understand today.
That's how long my disease was in remission. Today it's not as painful, but it sure is stubbornly holding on - that little screw in my gut gets pretty tight. The "big" symptoms of a couple weeks ago have fortunately subsided. This flare is becoming manageable day to day. I'm back to work, but I now know that CD isn't "over" - it just goes into hiding - if I'm as lucky or blessed this time around.
I didn't need the first line drugs seven years ago, and my GI wants me to wait a couple months to see if this flare heals. The CNP was ready to write a script, in fact she's probably still ready to break out the enticort or prednisone if this doesn't go away. I guess I'm trying to "ride out" the benefit of "late onset" CD and hope this flare resolves itself with careful diet, supplements, and probiotics - which does help me.
I've read some of your stories, and I've been a companion to a wonderful woman who's Crohn's Disease isn't "mild" at all. I'm very blessed and fortunate to be at the "mild" end of the Crohn's spectrum, and my heart goes out to any of you that are having flares where "all hell is breaking loose". I might not have been through as much, but I do understand, and I know what it's like to have pain so bad that you think you're dying.
I'm glad this forum is here...there's nothing more valuable than first hand information. Thanks for letting me share.
I'm a new kid on the old block. I'm joining ya'll in the "second peak" at the ripe young age of 51 (today!). Actually got the preliminary news a couple days ago calling what I have "Mild Crohn's Disease". It didn't come as much of a surprise - it actually made a whole bunch of my other medical "symptoms" make a lot more sense.
There is a peculiar irony about finding out that I have CD. I was a friend with a wonderful woman for many years but lost contact for a while. Last year she was diagnosed with CD, and she was hit real hard - extremely severe flare. Somehow we got back in touch, and I couldn't just sit there and watch her suffer, so I jumped in and helped her try to get her life under some control. I read, learned, and asked loads of questions everywhere and got a pretty good "educaction" about Crohn's Disease so that I could be a better friend. We've become best of friends and are on the journey of companionship.
So we were dealing with her flare, which has been pretty stubborn (off and on with no significant remission - once it shut off for six weeks). Suddenly my "regular" movements transform into watery movements, but still at the "regular" itervals - nothing "too much" out of the ordinary. This goes on for about 6 weeks, then out of nowhere, I get clobbered with excruciating upper stomach pain, anxiety coming out of my ears, fatigue, cramps, liquid movement jumps up to 3-10 times, and well you guys and gals know the rest - EVERYTHING else that happens in a "well-defined" flare. The lady-friend starts getting worried, but she doesn't tell me, because she sees the same symptoms.
I'm already scheduled for scoping because of my age, and the GI decides to do the upper scope too. He writes a letter that tells me about GERD and healing ulcers, and gastritis, and I get to the end of the letter and there's this little questionable thing that isn't quite explained - "focal active ileitis", and a "series of shallow ulcers" along the ileum. I didn't recall doing anything out of the ordinary that would bring this about?
I begin to do the "math". I already know that ulcers don't just come out of nowhere and show up in the ileum. I look at "ileitis" and I know that an "i-tis" of any sort means inflammation. So that tells me to subract "irritable" from the formula because there is active inflammation at the end of my small intestine. I also figure into the equation that, since the ileum is inflamed, that it obviously must be swollen. Which adds thickened walls to the formula.
Lets see? (active inflammation) + ("a series of shallow ulcerations") + (thickened intestinal walls) and it's all going on in about the middle of my gut where there is a constant ache, like someone tightening a little screw into the center of my belly. I know the "product" of this kind of math. Both my lady-friend and me are "tiptoeing" around Commander Obvious because nobody mentioned the "C-word" in the letter. I missed the memo that tells me either the "I" stands for "irritable" or "inflammatory".
This week the nurse reads the pathology report and what the doc had written down: "Mild Crohn's Disease" - even before the biopsies were returned. There isn't much else that does this kind of thing to the ileal part of the small intestine from what I understand - except Malaria.
When she read that report to me, I couldn't believe what I was hearing. Did she just say "Crohn's Disease"? You mean that I REALLY have this very same disease my girlfriend has? I recall the acute part of this flare in my mind. I know I didn't imagine this. I now what fatigue feels like. I know what these symptoms add up to. I've just watched someone near and dear to me go through almost a year of this off and on.
I know what her stomach sounds like when I lay my head on her lap. We're at her GI this morning, and my stomach is gurgling loud enough to get his attention. Those aren't "hunger sounds" either. I know what this is about logically, but the "superman" inside me is still sort of in a state of disbelief. You mean I really DO have this? I look in the "throne" this morning and a little red "patch" catches my eye. I put on my glasses, then say "what the hell did I eat that did that?" I remind myself that I know I should never study the stuff. I'm reminded that I really do have this disease.
This didn't just happen over the past three months. Something "happened" about 7 years ago that landed me in the ER. The stomach pain was horrendous - worse than this flare. I ordered those records and read about the "multiple loops" in my small intestine - and the partial obstruction of unknown "itiology". It didn't make sense 7 years ago, but I understand today.
That's how long my disease was in remission. Today it's not as painful, but it sure is stubbornly holding on - that little screw in my gut gets pretty tight. The "big" symptoms of a couple weeks ago have fortunately subsided. This flare is becoming manageable day to day. I'm back to work, but I now know that CD isn't "over" - it just goes into hiding - if I'm as lucky or blessed this time around.
I didn't need the first line drugs seven years ago, and my GI wants me to wait a couple months to see if this flare heals. The CNP was ready to write a script, in fact she's probably still ready to break out the enticort or prednisone if this doesn't go away. I guess I'm trying to "ride out" the benefit of "late onset" CD and hope this flare resolves itself with careful diet, supplements, and probiotics - which does help me.
I've read some of your stories, and I've been a companion to a wonderful woman who's Crohn's Disease isn't "mild" at all. I'm very blessed and fortunate to be at the "mild" end of the Crohn's spectrum, and my heart goes out to any of you that are having flares where "all hell is breaking loose". I might not have been through as much, but I do understand, and I know what it's like to have pain so bad that you think you're dying.
I'm glad this forum is here...there's nothing more valuable than first hand information. Thanks for letting me share.
