Life As I Know It
Wow! I cannot believe my last post was September 9h. Sorry guys, it's been a bit crazy around here so I'll start at the beginning.
August 12, 2011: Dr. Lusby (my GI/cranky colon doc) treated me in his office and determined I was having a flare up of the Ulcerative Colitis. The plan of action--to admit me to the hospital in hopes of calming things down quickly. I had suffered from many symptoms of the on coming flare for several weeks prior to this Friday visit but with the onset of some blood in my stool, it was time to get serious again.
August 12-17, 2011: Days spent in the hospital on IV fluids and pain killers. Blood has disappeared but still having quite a bit of colitis pain. No solid food until evening of Aug 16th and even though it was kept down it was not pleasant by any means. Various blood tests, CT scan, colonoscopy and xrays were performed gathering data in order to meet with a surgeon if needed. Everything was lining up that would make surgery-removal of colon and large intestine- look like the answer for ending this lengthy hospital stay and 7 years of misery with this disease. Enter Dr Holloway: general surgeon. He meets with my husband and I to discuss a possible colectomy- removal of colon and large intestine resulting in an iliostomy bag. He was very, very easy to visit with as well as extremely informative and took us step by step through the procedure. This was a huge decision but we felt we were in great hands with this surgeon. The next visit we had was with the hospital ostomy nurse. She came in to show us where and how I would wear the ileostomy bag and what daily life would be like with one. There was so much new info running through our brains it was really hard to process it all. Just about the time we had our minds wrapped around surgery and all that would come next...
August 17, 2011: Dr Lusby comes in very early on this morning. He feels we may be jumping the gun a bit to go ahead with surgery at this moment. I could feel all the hope drain from my body. Because most of my tests were coming back a little more normal than he preferred he couldn't in good conscience send me into surgery with out one more Hail Mary.
Dr. Lusby got things rolling faster than I knew was possible in the hospital world and I was checked out in less than 2 hours. I went straight to his office where I received a treatment of Remicade. My Hail Mary drug. About 3 years ago, I started Remicade as a last resort before surgery would be my only choice. It worked! It gave me my life back. As time went by though, the drug became less effective. We were worried about the long term effects of taking something so powerful for so many years anyway but too scared to not try it. This infusion helped me a great deal and I began to show improvement over the next few days. Of course, just being home and out of the hospital probably helped too!
So I rode the Remicade feel good wave for about 10 days and then crashed again. There was no mistaking it, Remicade had stopped working for me. My doc's belief is that although my colon looks pretty healthy for a UC patient, the disease has taken it's toll on the organ over the last 7 years and left it scarred. The colon and large intestine, where Ulcerative Colitis hangs out, had lost their motility and elasticity. In other words, it was no longer functioning as it should.
On September 9th a date with Dr. Holloway was made for the following Tuesday- September 13, 2011. He will perform a full colectomy and form a stoma on the outside of my abdommin where I will attach a bag. The stoma is basically the end of the small intestine brought to the outside of the body and will be the exit point of my bowels now. He will then sew the rectom closed as it will no longer be used to excrete waste from the body.
September 13, 2011: Day of surgery. I'm a little fuzzy on many of the details over the next few days, as you can imagine, but surgery was around 4 hours and I came through with flying colors. No setbacks or surprises for the surgery team. I was brought back to my room in the early evening to see my family waiting. That's an awesome feeling!
September 14, 2011: Day after surgery. I am feeling great, aside from the obvious pain of just having major surgery I am a happy camper. I see friends and family off and on all day. It was really fun to visit with so many sweet friends and the flowers were just pouring in. I LOVE flowers! They will cheer me up every single time! Then around 7pm, something changed and I crashed hard. I had just gone for a walk down the hall when I could see the blackness creeping in from the sides of my vision. I was about to pass out. Thankfully the 2 nurses with me reacted fast and seated me in a wheelchair type thing before I went down. Once back in my room and back in bed I began to tremble ferociously. It was the closest thing to a seizure I've ever experienced. I was able to stay calm and try to steady my breathing while my whole body convulsed and tightened every muscle I have. It was later determined that I had allowed the pain to get away from me. I had one of those nifty little pain pumps and was allowed 1 pump of medicine every 15 minutes basically. Well, you gotta remember, I'm used to being in chronic pain so I don't recognize pain as quickly as most people would. The nurses figured out that I had only pushed my pain button 6 times in the last 4 hours. Not nearly enough to keep the blackness at bay. I was so hyped up from all my company and still feeling some of the effects of the anethsia that I wasn't mindful to keep up with the pain button.
The next several days go by in haze of heavy narcotics and massive waves of pain. I begin vomiting and am unable to even sip water with out it coming back on me. Dr. Holloway is concerned because my bowel sounds have not returned from surgery and my ileostomy is hardly producing anything. I should be moving the gas by now at least. The gas from the laproscopic surgery should be going through the small intestine, out the stoma and into the bag I now wear. The nausea is so bad that I will projectile vomit anytime I move. Doc orders a NG tube. This is not fun! This is a tube they ram up your nose, while your awake by the way, down your throat and into your stomach. It then pumps all liquids from your stomach out into a lovely see through container for all to admire. I thought I was going to die or kill someone else if they told me to "just try to breathe through it" one more time. The NG tube did work wonders and helped me stop vomiting. However, this marked the end of my eating and drinking, even if it was only jello. Even with the NG tube now keeping my stomach empty and no food or drink coming orally I was in terrible pain and still no bowel sounds. Pain is slowly becoming unmanagable again and Holloway is visiting my room several times a day to listen for nonexistant bowel sounds. Even through the pain, drugs and nausea, I could tell something was very wrong. I was sent for xrays and had various other tests and blood work done. All ruling out infection or internal bleeding but none offering answers to my current condition.
Shannon was busy trying to keep himself afloat as well as our 2 boys. Thank God we have wonderful family and friends who helped us through. He was updating my facebook and sending emails on my progress and trying to answer questions no one had answers to.
September 20, 2011: A CT scan was done on the morning of September 20 after Holloway determined the bowel was finally waking up but he was concerned due to the very little production of the intestine into the ostomy bag. About 6pm that evening Holloway decided that he needed to go back in to make sure there was no blockage. The CT scan had shown everything flowing and moving properly until it reached the stoma part of the iliostomy. When he went in--I was out thankfully!!--he removed 2 stitches from the opening of the stoma to make it bigger and wha-lah! it worked! He said my bag began to immediately fill up and my distended tummy began to soften and go down almost immediately. It took him maybe 15 minutes to look around and double check everything else and then I was back in recovery. I felt so amazing coming out of recovery! I was high as a kite according to Shannon. As they wheeled me back to my room from surgery I told everyone who would listen in the halls and elevators that I had a stoma. I sounded like a 6 year old with their first loose tooth! The nurses were asking me how my pain level was and I would reply: "My pain? It hurts." I remember being absolutely fascinated by my nurses long hair. All three had hair in pony tails and the hair was still almost to their waist! Absolutely mind boggling to me at the time. Then I went back to the stoma, wondering if anyone else had one too or was I the only special person? I'm sure it was some much needed comical relief after the past 7 days of going down hill. I have a pain pump again and am well instructed on how to use it this time weather I feel pain or not. I do not let any of the medicine go to waste this time.
September 21-22, 2011: Huge improvement days for me. Lots of walking and learning how to use my iliostomy. Still no food but was allowed a few ice chips, still have NG tube in, still waiting for bowel sounds to return after 2nd round of surgery. The horrible pressure in my abdomin is finally relieved now that it's functioning properly. My pain rarely goes above a 6 now when we could barely keep it below a 7 prior to 2nd surgery.
September 23, 2011: Iliostomy bag finally starts producing like it should and NG tube comes out!!! Doc ok's clear liquids only for next 24 hours. Pain pump is removed and I'm started on oral pain control as well. I have a great day. Everyone round me is relaxing too, sensing the storm has moved on and better days are ahead.
Today, September 24, 2011: I am eating REAL food again! Shannon brought me a Venti Skinny Hazelnut Latte No Whip from Starbucks this morning. It was nothing short of manna from heaven. So now, I'm waiting. Waiting to see if my real food will cooperate, waiting to make sure my stoma does it's job, just waiting...
While I wait I am learning hands on, how to live with this ostomy bag. So far there's been a huge learning curve. It's not a really pleasant experience honestly. The nurses all say, I'll be able to do this in no time flat with out a mess. I'm waiting for that day to get here! Uhg, this is not for the faint of heart. I am slowly figuring out how to empty the bag with out having to change all my clothes and take a shower immediately afterward. You should be issued a hazmat suit and gas mask with installation of stoma. I am now only using surgical gloves, air freshener and a bandana spayed with perfume wrapped around my nose like an outlaw. I do sing to myself right now while in the process of emptying it. Not sure what that does other than distract me from the sight and smell of the bag's contents. Jesus Loves Me is my mantra right now. Funny how that little childhood song can get me through some of the really tough adult stuff I've had to deal with.
August 12, 2011: Dr. Lusby (my GI/cranky colon doc) treated me in his office and determined I was having a flare up of the Ulcerative Colitis. The plan of action--to admit me to the hospital in hopes of calming things down quickly. I had suffered from many symptoms of the on coming flare for several weeks prior to this Friday visit but with the onset of some blood in my stool, it was time to get serious again.
August 12-17, 2011: Days spent in the hospital on IV fluids and pain killers. Blood has disappeared but still having quite a bit of colitis pain. No solid food until evening of Aug 16th and even though it was kept down it was not pleasant by any means. Various blood tests, CT scan, colonoscopy and xrays were performed gathering data in order to meet with a surgeon if needed. Everything was lining up that would make surgery-removal of colon and large intestine- look like the answer for ending this lengthy hospital stay and 7 years of misery with this disease. Enter Dr Holloway: general surgeon. He meets with my husband and I to discuss a possible colectomy- removal of colon and large intestine resulting in an iliostomy bag. He was very, very easy to visit with as well as extremely informative and took us step by step through the procedure. This was a huge decision but we felt we were in great hands with this surgeon. The next visit we had was with the hospital ostomy nurse. She came in to show us where and how I would wear the ileostomy bag and what daily life would be like with one. There was so much new info running through our brains it was really hard to process it all. Just about the time we had our minds wrapped around surgery and all that would come next...
August 17, 2011: Dr Lusby comes in very early on this morning. He feels we may be jumping the gun a bit to go ahead with surgery at this moment. I could feel all the hope drain from my body. Because most of my tests were coming back a little more normal than he preferred he couldn't in good conscience send me into surgery with out one more Hail Mary.
Dr. Lusby got things rolling faster than I knew was possible in the hospital world and I was checked out in less than 2 hours. I went straight to his office where I received a treatment of Remicade. My Hail Mary drug. About 3 years ago, I started Remicade as a last resort before surgery would be my only choice. It worked! It gave me my life back. As time went by though, the drug became less effective. We were worried about the long term effects of taking something so powerful for so many years anyway but too scared to not try it. This infusion helped me a great deal and I began to show improvement over the next few days. Of course, just being home and out of the hospital probably helped too!
So I rode the Remicade feel good wave for about 10 days and then crashed again. There was no mistaking it, Remicade had stopped working for me. My doc's belief is that although my colon looks pretty healthy for a UC patient, the disease has taken it's toll on the organ over the last 7 years and left it scarred. The colon and large intestine, where Ulcerative Colitis hangs out, had lost their motility and elasticity. In other words, it was no longer functioning as it should.
On September 9th a date with Dr. Holloway was made for the following Tuesday- September 13, 2011. He will perform a full colectomy and form a stoma on the outside of my abdommin where I will attach a bag. The stoma is basically the end of the small intestine brought to the outside of the body and will be the exit point of my bowels now. He will then sew the rectom closed as it will no longer be used to excrete waste from the body.
 |
| Before surgery |
September 14, 2011: Day after surgery. I am feeling great, aside from the obvious pain of just having major surgery I am a happy camper. I see friends and family off and on all day. It was really fun to visit with so many sweet friends and the flowers were just pouring in. I LOVE flowers! They will cheer me up every single time! Then around 7pm, something changed and I crashed hard. I had just gone for a walk down the hall when I could see the blackness creeping in from the sides of my vision. I was about to pass out. Thankfully the 2 nurses with me reacted fast and seated me in a wheelchair type thing before I went down. Once back in my room and back in bed I began to tremble ferociously. It was the closest thing to a seizure I've ever experienced. I was able to stay calm and try to steady my breathing while my whole body convulsed and tightened every muscle I have. It was later determined that I had allowed the pain to get away from me. I had one of those nifty little pain pumps and was allowed 1 pump of medicine every 15 minutes basically. Well, you gotta remember, I'm used to being in chronic pain so I don't recognize pain as quickly as most people would. The nurses figured out that I had only pushed my pain button 6 times in the last 4 hours. Not nearly enough to keep the blackness at bay. I was so hyped up from all my company and still feeling some of the effects of the anethsia that I wasn't mindful to keep up with the pain button.
The next several days go by in haze of heavy narcotics and massive waves of pain. I begin vomiting and am unable to even sip water with out it coming back on me. Dr. Holloway is concerned because my bowel sounds have not returned from surgery and my ileostomy is hardly producing anything. I should be moving the gas by now at least. The gas from the laproscopic surgery should be going through the small intestine, out the stoma and into the bag I now wear. The nausea is so bad that I will projectile vomit anytime I move. Doc orders a NG tube. This is not fun! This is a tube they ram up your nose, while your awake by the way, down your throat and into your stomach. It then pumps all liquids from your stomach out into a lovely see through container for all to admire. I thought I was going to die or kill someone else if they told me to "just try to breathe through it" one more time. The NG tube did work wonders and helped me stop vomiting. However, this marked the end of my eating and drinking, even if it was only jello. Even with the NG tube now keeping my stomach empty and no food or drink coming orally I was in terrible pain and still no bowel sounds. Pain is slowly becoming unmanagable again and Holloway is visiting my room several times a day to listen for nonexistant bowel sounds. Even through the pain, drugs and nausea, I could tell something was very wrong. I was sent for xrays and had various other tests and blood work done. All ruling out infection or internal bleeding but none offering answers to my current condition.
 |
| NG tube (not a happy camper!) |
 |
| picture of stoma (red button looking thingy) also one of 5 incisions used for lapriscopic removal of colon and lg intestine. (just above belly button) tummy is distended with air from surgery & bruising is normal. |
September 21-22, 2011: Huge improvement days for me. Lots of walking and learning how to use my iliostomy. Still no food but was allowed a few ice chips, still have NG tube in, still waiting for bowel sounds to return after 2nd round of surgery. The horrible pressure in my abdomin is finally relieved now that it's functioning properly. My pain rarely goes above a 6 now when we could barely keep it below a 7 prior to 2nd surgery.
September 23, 2011: Iliostomy bag finally starts producing like it should and NG tube comes out!!! Doc ok's clear liquids only for next 24 hours. Pain pump is removed and I'm started on oral pain control as well. I have a great day. Everyone round me is relaxing too, sensing the storm has moved on and better days are ahead.
While I wait I am learning hands on, how to live with this ostomy bag. So far there's been a huge learning curve. It's not a really pleasant experience honestly. The nurses all say, I'll be able to do this in no time flat with out a mess. I'm waiting for that day to get here! Uhg, this is not for the faint of heart. I am slowly figuring out how to empty the bag with out having to change all my clothes and take a shower immediately afterward. You should be issued a hazmat suit and gas mask with installation of stoma. I am now only using surgical gloves, air freshener and a bandana spayed with perfume wrapped around my nose like an outlaw. I do sing to myself right now while in the process of emptying it. Not sure what that does other than distract me from the sight and smell of the bag's contents. Jesus Loves Me is my mantra right now. Funny how that little childhood song can get me through some of the really tough adult stuff I've had to deal with.
Thank you so much for sharing all of this Monnie. I am so happy to hear everything from your point of view. I have been in that black, hazy place of pain and illness and I know it is just dark and horrible. I worried so much about you during these days. I even drove up just to give you a card knowing that you were in no condition to see anybody (I would not want to either - and I did the very same thing).
ReplyDeleteI studied up on stoma's and interestingly, I found the most useful knowledge came from youtube. I looked at hundreds of stoma pictures and the different sorts of bags - everything. I can imagine that this is going to be a huge change for you, but I also know that you have the incredible positive attitude and humor that will get you through this and just make you stronger.
I think that I learn more from others than I have from myself seeing them go through things. I have to admit, it is sometimes more difficult being the loved one and worrying about the people you love going through so much pain. It made me appreciate my husband and daughter so much more. I cannot imagine how Shannon has kept everybody up to date, handled two boys and their schedules, as well as be there for you. You are so incredibly blessed to have such a wonderful family (I feel blessed to have mine as well). Your parents are also nothing short of INCREDIBLE!
I guess I just want to let you know that you have been on my mind and it is really wonderful to hear your words from you again.
Also, thank you so much for sharing all the details with us on your blog. It is sometimes hard writing down everything you have been through, but if you are like me, it helps me move past it and just keep it "filed" away nicely.
Happy to see you smile Monnie!
-Talese
Monnie-
ReplyDeleteThanks for sharing. You have been on my mind and i am glad to hear that you are much better. I will continue to keep you, Shannon and your boys in my prayers as you start on this new phase of your life. You seem to have kept your sense of humor and i know that for me that has always helped get me through tough times.
Hang in there- Evaney Priolo