xJillx
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- Joined
- Jan 7, 2011
- Messages
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Hi Everyone! My name is Jill and I was diagnosed with CD in July 2010 at age 26. I never experienced any symptoms in my life until this past spring. I feel like my CD diagnosis came out of left field. I am still in slight denial. Anyways, here’s a quick rundown of the past few months:
April 2010-July 2010 – I had been passing mucus once or twice a week, but I dismissed it because I was eating a very high fiber diet. I assumed I was just getting too much fiber.
Mid July 2010 – I had a 48 hour period of being in and out of the bathroom with several bowel movements (no D) with mucus and blood and flu-like symptoms. I finally told my husband about the weekly mucus and we decided to see a GI.
Late July 2010 – A colonoscopy was performed (my 3 year wedding anniversary was the night before and we celebrated with my husband mixing my prep with apple juice and him feeding it to me after I had violently thrown up the first 3 cups – it was truly one to remember - LOL) which showed several small ulcers, mostly in my ileum. Biopsies did not come back “chronic” for CD and blood tests and CAT scan were normal, but my doctor was pretty sure that was what I had, though I had no other symptoms. Being that the case, I didn’t start any medication.
August 2010-October 2010 – More symptoms started to develop such as more visits to the bathroom (about 3 trips a day), urgency, abdominal pain, and swollen tongue, so I began taking 2 pills of Lialda once a day.
November 2010 – I wasn’t feeling much better and the mucus wasn’t improving (my most prominent symptom), so I went to a teaching hospital in Philly to see a specialist. I was given Canasa to take before bed, which seemed to help the mucus after a few weeks.
December 2010-Present – I have been having some good days and bad. I did have two straight weeks in December that I felt no symptoms at all, which was glorious. However, during that time, I started feeling tightness/pressure in my chest that would come on mostly at night. But doctors don’t think it is Crohn’s related. And, most recently, I have been experiencing some constant mild-moderate abdominal pain. My doctor did just up my Lialda to 4 pills a day, so I am hoping that will help.
It hasn’t been an easy few months, but it certainly hasn’t been as bad as other stories I have read on here (I’ve been reading for awhile). But, I often worry this is only the beginning for me and I am afraid of what the future will bring. I have a few questions and would appreciate anyone willing to answer. Thanks for reading, and I apologize for it being so lengthy!
1. I have had only the one colonoscopy, but I fear the next because immediately after the procedure I felt a nagging pressure/pain in my upper left side (basically in the ribs)for weeks – has anyone else experienced this?
2. Since starting Lialda, I have noticed the toilets are stained a brownish/purplish color. My doctor seems stumped, but I am convinced it is the meds. Has anyone else noticed this and is it a concern?
3. Has anyone else’s tongue become swollen (no sores, though)? Doctor stumped on this one, too…
4. Has anyone else experienced chest pressure/pain?
5. Does CD always progress? Is it at all possible that what I am experiencing now is it, or does CD inevitably get worse?
April 2010-July 2010 – I had been passing mucus once or twice a week, but I dismissed it because I was eating a very high fiber diet. I assumed I was just getting too much fiber.
Mid July 2010 – I had a 48 hour period of being in and out of the bathroom with several bowel movements (no D) with mucus and blood and flu-like symptoms. I finally told my husband about the weekly mucus and we decided to see a GI.
Late July 2010 – A colonoscopy was performed (my 3 year wedding anniversary was the night before and we celebrated with my husband mixing my prep with apple juice and him feeding it to me after I had violently thrown up the first 3 cups – it was truly one to remember - LOL) which showed several small ulcers, mostly in my ileum. Biopsies did not come back “chronic” for CD and blood tests and CAT scan were normal, but my doctor was pretty sure that was what I had, though I had no other symptoms. Being that the case, I didn’t start any medication.
August 2010-October 2010 – More symptoms started to develop such as more visits to the bathroom (about 3 trips a day), urgency, abdominal pain, and swollen tongue, so I began taking 2 pills of Lialda once a day.
November 2010 – I wasn’t feeling much better and the mucus wasn’t improving (my most prominent symptom), so I went to a teaching hospital in Philly to see a specialist. I was given Canasa to take before bed, which seemed to help the mucus after a few weeks.
December 2010-Present – I have been having some good days and bad. I did have two straight weeks in December that I felt no symptoms at all, which was glorious. However, during that time, I started feeling tightness/pressure in my chest that would come on mostly at night. But doctors don’t think it is Crohn’s related. And, most recently, I have been experiencing some constant mild-moderate abdominal pain. My doctor did just up my Lialda to 4 pills a day, so I am hoping that will help.
It hasn’t been an easy few months, but it certainly hasn’t been as bad as other stories I have read on here (I’ve been reading for awhile). But, I often worry this is only the beginning for me and I am afraid of what the future will bring. I have a few questions and would appreciate anyone willing to answer. Thanks for reading, and I apologize for it being so lengthy!
1. I have had only the one colonoscopy, but I fear the next because immediately after the procedure I felt a nagging pressure/pain in my upper left side (basically in the ribs)for weeks – has anyone else experienced this?
2. Since starting Lialda, I have noticed the toilets are stained a brownish/purplish color. My doctor seems stumped, but I am convinced it is the meds. Has anyone else noticed this and is it a concern?
3. Has anyone else’s tongue become swollen (no sores, though)? Doctor stumped on this one, too…
4. Has anyone else experienced chest pressure/pain?
5. Does CD always progress? Is it at all possible that what I am experiencing now is it, or does CD inevitably get worse?
