Met with a doctor this week in DC. We discussed the options about my possible reversal. The annoying thing about doctors is... with something like this they won't, and can't really, give you a solid answer. Reversal without a colon is really kind of a 50/50.
Things could go well, I could be almost normal again! Or... things could go bad, worse than my last flare. And of course, every option in between. One thing we know for sure. With Crohns, my disease will act up again. Someday, somehow. I am not cured.
I am leaning to getting the surgery. If I try and the results are bad then I go back to the ostomy, the bag... for life. But... what if the results are good. Good means NO BAG. Good means all my insides back in where they belong. My stool will never be normal again but... the rectum can take over some of the job the colon did and the output could thicken some. I could lead a fairly normal life for as long as my body allows me to before I have to return to this. This bag.
I've gotten used to the bag. I've learned to deal with what my new normal is. But, it doesn't make me like it. My self esteem, my self image - not good. I have never been the kind of girl that fits in. The one that has a group of really close friends or is... you know, in the popular group. That was never me. All I ever wanted is to fit in - and while I am far from my high school days of desperately wanting that - it's still a thought in the back of my mind. The bag makes me not normal... weird... different. I don't like it. I don't like constantly worrying about a bag leak. I worry that someone will notice when it fills with air and it is SO noticeable. I do NOT like how it feels to have a bag of your own poop hanging off your stomach.
I feel like even my friends and family who say they don't care, don't notice, don't think about it... don't they see me different? Don't they think it's gross, weird? Who wants to get close to, hug someone, be near someone who you know has a bag of poop just right below the surface of their clothes? GROSS. I have had friends say it's gross. Heck, my 2 year old daughter says every time she sees me in the bathroom "Ew, Mommy, that's gross." or "Ew, you're gross." I know she's 2...I know she doesn't know but... it hurts. BAD. When someone says it's gross... what I hear is my 2 year old... "you're gross"
I don't have a lot of close friends. Very few. I am sure the ones I do have are so sick of this. Of me talking about this. I try not to anymore - at least not as much. I don't talk about my pain anymore... I don't talk much about what I think about what I am going through because I just want to be normal. While I really want to... I want the support, the feedback, the strength of someone telling me that they support me 100% no matter what I decide... I just mostly want to pretend none of this is happening.
But, it is happening.
I've been sick a lot since I've moved to the town we live in. I've hid it well overall (aside from last year) but... it has shaped opinions of me. It's hard to form relationships with people when you not in the best frame of mind.
I haven't had a lot of my life where I've felt good or been healthy. I like to think I am pretty fun when I feel good. I love to have fun, to hang out, make jokes, be silly... my close friends, I hope, know that I am one of those people you can count on. You need something, I am there. Maybe my life is hectic with the two littles and I may not always come fourth immediately but... you ask and I would take the shirt off my back if you needed it. I wish people here knew that about me. I wish people would get to know the non-sick me...whomever she is.
I've been lucky as far as my husband goes. I've read posts in my support groups about husbands leaving when this happens. Mine has been there for me 100% through this. He supports me, wants me well... he is amazing. He just wants me to be healthy and feel good about myself.
I've rambled as I often do with my blog posts. So... back to the topic at hand. Reverse or not to reverse. My tests start soon to get a good look at everything I have going on. To make sure my body can handle the surgery part. Hopefully in the time it takes to complete those tests... I will have come to a decision.
Friday, March 20, 2015
Monday, March 2, 2015
My memory sucks... because of prednisone.
One of the hardest things to explain to people are the random long term side effects that come with the medications you're on all the time for a chronic illness.
One that has really affected me in my life is memory problems due to chronic prednisone treatment over the course of almost 30 years. This is a very rare side effect and generally only happens permanently when you are on a very high dose for a long period of time.
When I was 19, I was diagnosed and then went back to college, away from doctors and family. The doctor there was unfamiliar with Crohns and the treatment I should be receiving. I was on a very high dose of prednisone for a very long period of time (at least 6 months straight ranging from 40-80 mg daily). At my highest dose, 80mg for 3 months STRAIGHT. This was the time in which I gained 120 pounds in 3 months. But it also had side effects that I still have to this day - and I am now 37. Some people experience short term memory loss when on short bursts of prednisone but, those symptoms subside or even go away after they go off the drug. Because of the extent of time I was on the drug, and the extreme dose - this is a symptom I still have. I've seen a lot of studies about the effect of prednisone and memory loss (including one where it showed that it was caused by actual brain damage - yikes) and have seen studies like below which give me some form of validation as one doctor once told me - it's in your head:
Time on Prednisone when people have Short-term memory loss:
I hate having a crappy memory. I remember a fair bit of stuff but there is a lot I forget. I KNOW it makes me seem to people that I must just not care about what they tell me, or that I wasn't listening. I have to write down a lot of what I need to remember, even the small things. If I don't write it down, there is a fairly good chance I won't remember it. I am sure this paints me in a bad light for people who don't know me well. And I am sure the people in my life who do know me well, think I just don't listen/don't care.
The other annoying thing about it comes with the people who know this about me. So, I get a lot of "Well, you don't remember this right because your memory sucks." - I do not forget everything and it doesn't change my memory to something different. It's a very frustrating thing for me. I want to remember things, especially things that are important to my family/friends. And NO, I do not forget everything!
I want to remember important dates. I want to remember that I said I'd bring the kids for a playdate with you on Tuesday, or have lunch with you a week from Friday. But, I don't always remember these things. Please know: it's not because I don't care/don't want to see you/etc. And when I do remember too late, I feel like a colossal ass. And a lot of the time I don't know how to even approach the subject with you. So, please... be kind and understanding of me and my crappy memory. It's just another unfortunate effect of living with a chronic illness. And maybe send me a reminder of something we scheduled - a simple are we still on for tomorrow will make a world of difference :)
One that has really affected me in my life is memory problems due to chronic prednisone treatment over the course of almost 30 years. This is a very rare side effect and generally only happens permanently when you are on a very high dose for a long period of time.
When I was 19, I was diagnosed and then went back to college, away from doctors and family. The doctor there was unfamiliar with Crohns and the treatment I should be receiving. I was on a very high dose of prednisone for a very long period of time (at least 6 months straight ranging from 40-80 mg daily). At my highest dose, 80mg for 3 months STRAIGHT. This was the time in which I gained 120 pounds in 3 months. But it also had side effects that I still have to this day - and I am now 37. Some people experience short term memory loss when on short bursts of prednisone but, those symptoms subside or even go away after they go off the drug. Because of the extent of time I was on the drug, and the extreme dose - this is a symptom I still have. I've seen a lot of studies about the effect of prednisone and memory loss (including one where it showed that it was caused by actual brain damage - yikes) and have seen studies like below which give me some form of validation as one doctor once told me - it's in your head:
Time on Prednisone when people have Short-term memory loss:
| < 1 month | 1 - 6 months | 6 - 12 months | 1 - 2 years | 2 - 5 years | 5 - 10 years | 10+ years | |
| Short-term memory loss | 25.44% | 30.70% | 4.39% | 7.89% | 14.91% | 8.77% | 7.89% |
Severity of Short-term memory loss when taking Prednisone:
| least | moderate | severe | most severe | |
| Short-term memory loss | 10.71% | 57.14% | 28.57% | 3.57% |
How people recovered from Short-term memory loss:
| while on the drug | after off the drug | not yet | |
| Short-term memory loss | 0.00% | 0.00% | 100.00% |
I hate having a crappy memory. I remember a fair bit of stuff but there is a lot I forget. I KNOW it makes me seem to people that I must just not care about what they tell me, or that I wasn't listening. I have to write down a lot of what I need to remember, even the small things. If I don't write it down, there is a fairly good chance I won't remember it. I am sure this paints me in a bad light for people who don't know me well. And I am sure the people in my life who do know me well, think I just don't listen/don't care.
The other annoying thing about it comes with the people who know this about me. So, I get a lot of "Well, you don't remember this right because your memory sucks." - I do not forget everything and it doesn't change my memory to something different. It's a very frustrating thing for me. I want to remember things, especially things that are important to my family/friends. And NO, I do not forget everything!
I want to remember important dates. I want to remember that I said I'd bring the kids for a playdate with you on Tuesday, or have lunch with you a week from Friday. But, I don't always remember these things. Please know: it's not because I don't care/don't want to see you/etc. And when I do remember too late, I feel like a colossal ass. And a lot of the time I don't know how to even approach the subject with you. So, please... be kind and understanding of me and my crappy memory. It's just another unfortunate effect of living with a chronic illness. And maybe send me a reminder of something we scheduled - a simple are we still on for tomorrow will make a world of difference :)
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