The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel. Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)
Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates
Me, not aware of my stoma or bag. For the moment! ------->
The last few days I've had quite a few moments where I have forgotten about my ostomy and my bag. Granted, it has been when the bag was empty so there was no pull or weight to it on my abdomen. But truly, my body was not in the forefront of my mind on various occasions. To 'normal' people it probably doesn't mean much, but as a sick person who for almost 4 years, has been so physically self aware at all times it's unbelievable. Everything you see, and do is secondary to how you feel. Let me explain. For going on 4 years I have 24/7 been keenly aware of my body, my intestinal processes, my pain level and the proximity to the nearest bathroom. For the most part I knew exactly what part of my guts were working, when. Who can say that? Even at night when I slept, the pain from my disease has crept in to my dreams. If I went to bed pain free, I would dream I was being stabbed or hurt and in severe pain, and wake up in pain. It had started while I was asleep. I guess my body wanted me to pop a pain pill!!
Going to a mall was very often, not an option, because we all know you need to take a cab to the bathrooms in malls and department stores. They are always half a mile a way. When you have IBD that is a half mile too far. Sometimes, 2 feet is too far, too late. Every decision I made during that time was weighed and measured carefully in terms of the situation. Car ride? How far, how long? Go for a walk? Sure, up and down our block because if I'm too far it might be a disaster. A movie? Nah- I'll rent that shit!! Theatre bathrooms are always gross!!The smallest and most basic activities and decisions were shadowed by how bad my flare was that day. It controlled my life. If you could even say I had a life.
When you are chronically ill you are aware of the most minuscule bump in the road while driving. I seriously used to get shooting intestinal pains from it. The bounce. The seatbelt. I've had canker sores so bad that it was all I could do all day was be overwhelmed by the pain. I couldn't think, or accomplish anything. Forget speaking. Anytime I would attempt to eat out it was a game of what would work, and what would kill me. Many times I would not make it home after eating out. Hell, I wouldn't make it out of the restaurant. Eating was Russian Roulette.
I had never been a self conscious person, but being sick gave that to me as a big lame gift. I was self conscious when I was 98lbs, underweight and bony. I had bruises from IVs and I could feel every eye wondering what my story was. I was self conscious when I was on steroids and then my weight swung the other way and I was the heaviest I had ever been. Bigger than when I was pregnant. My face blew up until I would stare at myself and not know who I was. I was self conscious of how uncomfortable I was in that body. It didn't feel like mine. I felt trapped. Even now, I'm a little lighter than my normal, but I am aware (not self conscious) everyday of my bag and my ostomy. Especially when it's burning or itching. I feel it puff up and alter how my clothes fit. If I'm wearing the belt, I feel that especially in the heat.
All this is why it has been so amazing that the fact that I have an ostomy has disappeared from my mind, even for a second, more than once. It's not like I forgot, it's just that I stopped being hyper aware for that moment. I think it is because I have my life back, for the most part. The pain is gone, the fatigue, the arthritis, the canker sores, the blood loss, the urgency. Gone. Life is as it was. It's like I never had UC. In those few fleeting moments I let it go. The history disappeared. Looking at my body right now is the only way I know I was that sick. Looking at the scar and ostomy. Otherwise, it's like my health hit rewind. I'm not 100%, don't get me wrong, but if I had to stay at this point and this moment I would be happy.
It is incredible to think that a few weeks ago I was crying and frustrated and not knowing if I could make it. Now I could probably change my wafer and bag in the dark with one hand. No kidding. I don't even think about it anymore.
I've learned my self awareness and self consciousness are not always partners in crime. As I've gotten healthier the self consciousness has dropped off. Even the physical awareness has tapered. I still know more about guts, autoimmune disease and meds than I ever imagined I would but at least for the moment,
I have more a level playing field. My guts (or lack of) don't determine my days anymore. I can focus on real life stuff, and not the pain. I don't have to be afraid to be across the mall from the restroom. I'm not afraid to go out to dinner or sit through a 3 hour class.
I could easily still be fighting, and losing. I was losing physically, mentally and emotionally. I was just barely going through days. I wasn't enjoying them. I couldn't enjoy them. Now, I'm taking back over. Me forgetting my Stupid Stoma for a moment showed me that. I've got more going on than my ailments. They ride shotgun now. I'm back behind the wheel. =-)
Healing is a matter of time, but it is sometimes also a matter of opportunity.
Hippocrates
Me, not aware of my stoma or bag. For the moment! ------->
I'm happy to hear that your ostomy is working well for you. I had one for 8 months between surgeries and while my adjustment to the j-pouch was not easy, I really hope I don't ever have to go back to the ostomy bag. I had 2 hugely embarrassing accidents with mine (contents spilled in public).
ReplyDeleteGood luck!, Richard
I can't imagine. I've been lucky to avoid the public explosion. Had a couple at home though. I can see why you feel that way. Glad the j pouch is working, despite the adjustment. I hope mine goes well.
DeleteReading this brings back memories with my wife being sick for six years. Scary vacations, no road trips, pain in the arse :). In 2010 after our 2nd child, my wife had the partial colectomy. On 2011 jpouch created and hopefully soon the reversal. It has been tough being the husband and main person taking care ofthe kids, but we fot throigh it with love and communication.
ReplyDeleteGood for you for being her rock. My Hubs is mine. I don't know what I'd do without him. Hopefully the nest surgery goes well!! Mine will be sometime in October!
Deletelove this! I have Crohn's disease with a permanent Ileostomy. I write a blog and enjoy the crazy, as well. Reading this felt like home! Can't wait to read more! I am commenting through my google acct. but my website is reinventingmyselfinto.com
ReplyDeleteGood luck! Randi
Thank you for reading! I will check yours out!! =)
DeleteI love your blog. I have had FAP for 18 years with no complications until about 10 months ago where I started to get really sick I know what your saying about not being able to be far away from the ladies. 4 months ago I was admitted to hospital in absolute agony to find out I had colon cancer where I have since had surgery & have a ileostomy for life people look at me with pitty but this gives me quality of life I am two weeks away from a 8 hour surgery to remove the cancer then followed by 6 months of chemo but it is not life ending having a bag it has saved my life thank you for posting the pict I may be confident one day to do the same but this gives me hope.
ReplyDeleteThank you
Glad you are well and beat cancer!!! People are afraid of the unknown. That's what drives comments etc... I never see my ileo as a handicap. I was handicapped before when I was sick 24/7. No one would ever tell an amputee their prosthetic is too bad. Suddenly, when it's poop, the game changes.
DeleteThank you for reading!!!
Delete