Regular Joe
Senior Member
- Joined
- Sep 2, 2009
- Messages
- 303
Hi friends,
I haven't been around for a while, so I wanted to say hello. Maybe give a little update.
Currently, the gut and butt are still on the rampage. More so over the past couple weeks. I'm getting worn out (I'll pass on the cheese with that whine!).
I've gone down several belt notches with no real end in sight yet. Unfortunately, I haven't got treatment YET almost a year later. My surgeon has postponed a knee replacement until I get the "flare" stabilized. He sent me back to the GI and a rheumatologist. Did some blood work, and sure enough have an inflammation still going on. Rheumatologist and surgeon are betting 9 out of 10 on Crohn's, but none of the guys want to go beyond "Inflammatory Bowel Disease", they joined the primary care doc. The new GI who isn't so new anymore is going in for a colonoscopy in a couple weeks.
One thing I found out for sure, nothing that they've tried medicating me with while diagnosing works...which would be about 4-5 IBS therapies, but I could have told them that.
This sure is a stubborn disease, ennit folks? I finally figured out why the GI wanted to avoid pred. Rheumetologist said it has 20 side effects and I will undoubtedly get a few. Most troublesome is joint weakness and possible weight gain, so even before I start anything, it won't be pred or a steroid. My joints have been going to hell in handbasket. Any more weight on them won't help. I think they're leaning toward Humira.
Today is different, I'm getting joint pain in one joint at a time, and it's travelling all over the place. I haven't been eating much over the past week, aside from fun-filled and tasty low-res cuisene. I'm about exhausted and I shouldn't have gone to work today, but I have the GI appt in less than two weeks, and I can't afford losing more pay.
One thing I've begun to realize. At first I thought my flares were "episodic". But it's not that way. The rheumatologist pointed that out. He said I have constant low-grade symptoms with acute periods or episodes. Even the "episodes" however are becoming more constant with maybe only a period of days between problems instead of a couple weeks. So it's not really "flares" but one long uneven flareup that's been in motion since June of last year. I'm about ready to lose the job, or give it up one or the other. At least I'll get some form of retirement. I'm getting tired. Real tired.
The good thing is I still can smile, there are still things that really get me happy. The limitations are pretty hard for me to accept, so I keep on pushing through things. I just get tired out a lot quicker, I have to take naps, and a lot of rest, and avoid climbing stairs. Oh and I sleep on my stomach a lot more. I have a sweetheart of a girlfriend - still the same one who also has Crohns, so I couldn't be in a better relationship with a nicer person. Here's the irony of it: when I first started seeing her, she was in a major flare and practically immobilized, and I helped her along. Today, it's the other way around, her flare is subsiding, and mine is kicking my butt!
I also found a free nutritionist through my health care insurance, and the IBD diet guidlines she gave me have been pretty helpful. She calls every couple weeks.
Well that's all from me. I'll poke around to see how you all are doing.
Love ya,
Joseph
I haven't been around for a while, so I wanted to say hello. Maybe give a little update.
Currently, the gut and butt are still on the rampage. More so over the past couple weeks. I'm getting worn out (I'll pass on the cheese with that whine!).
I've gone down several belt notches with no real end in sight yet. Unfortunately, I haven't got treatment YET almost a year later. My surgeon has postponed a knee replacement until I get the "flare" stabilized. He sent me back to the GI and a rheumatologist. Did some blood work, and sure enough have an inflammation still going on. Rheumatologist and surgeon are betting 9 out of 10 on Crohn's, but none of the guys want to go beyond "Inflammatory Bowel Disease", they joined the primary care doc. The new GI who isn't so new anymore is going in for a colonoscopy in a couple weeks.
One thing I found out for sure, nothing that they've tried medicating me with while diagnosing works...which would be about 4-5 IBS therapies, but I could have told them that.
This sure is a stubborn disease, ennit folks? I finally figured out why the GI wanted to avoid pred. Rheumetologist said it has 20 side effects and I will undoubtedly get a few. Most troublesome is joint weakness and possible weight gain, so even before I start anything, it won't be pred or a steroid. My joints have been going to hell in handbasket. Any more weight on them won't help. I think they're leaning toward Humira.
Today is different, I'm getting joint pain in one joint at a time, and it's travelling all over the place. I haven't been eating much over the past week, aside from fun-filled and tasty low-res cuisene. I'm about exhausted and I shouldn't have gone to work today, but I have the GI appt in less than two weeks, and I can't afford losing more pay.
One thing I've begun to realize. At first I thought my flares were "episodic". But it's not that way. The rheumatologist pointed that out. He said I have constant low-grade symptoms with acute periods or episodes. Even the "episodes" however are becoming more constant with maybe only a period of days between problems instead of a couple weeks. So it's not really "flares" but one long uneven flareup that's been in motion since June of last year. I'm about ready to lose the job, or give it up one or the other. At least I'll get some form of retirement. I'm getting tired. Real tired.
The good thing is I still can smile, there are still things that really get me happy. The limitations are pretty hard for me to accept, so I keep on pushing through things. I just get tired out a lot quicker, I have to take naps, and a lot of rest, and avoid climbing stairs. Oh and I sleep on my stomach a lot more. I have a sweetheart of a girlfriend - still the same one who also has Crohns, so I couldn't be in a better relationship with a nicer person. Here's the irony of it: when I first started seeing her, she was in a major flare and practically immobilized, and I helped her along. Today, it's the other way around, her flare is subsiding, and mine is kicking my butt!
I also found a free nutritionist through my health care insurance, and the IBD diet guidlines she gave me have been pretty helpful. She calls every couple weeks.
Well that's all from me. I'll poke around to see how you all are doing.
Love ya,
Joseph
