Good Evening readers! I'm finding that when I want to write I don't. So I apologize for inconsistency in my posts, but hope that you enjoy my posts when they do pop up. The weather in upstate is finally warm, today we hit 70 and I loved every minute of it. This weekend I finally got a massage appointment, and it helped my neck a little but I still don't have full range in turning my neck so I see a Chiropractor tomorrow afternoon. I'll be so grateful when I can look to my sides without turning my whole body.
Last week I went back to my gastro doctor because I have been having issues while being on Remicade. He had placed me on Pentasa (3 weeks ago) to work with the Remicade, but I have been seeing him every 2 weeks to see if I get any better or not. Well when I went 2 weeks ago I felt awful, and he ordered all these tests to be ran to see how my body was coping with the Remicade. When I went back on Friday I felt great so he canceled 2 of my tests. But I go for an infusion this Thursday, and since having surgery I haven't found a solid non-flare-up-time (made up word). I receive my infusion and am great until about the 10th day after infusion, but then I get so sick with a flare-up for 7 days. It's hell and I have been missing a solid week worth of work during this time because my flare-up is so bad; I end up with fevers, mouth sores, diarrhea, and abdominal pain. After day 6 going into day 7 of being sick I begin to feel better. Then the flare-up begins to subside, and I spend about 5 days feeling BLAH, not really sick but not feeling well either. After that the flare-up subsides, and I feel fine then I get another infusion and repeat cycle. I have an infusion every 6 weeks due to the severity of my Crohn's, but since surgery I don't seem to be doing as well, but this infusion is the 1st one that I've been on Pentasa for so we will see how I fair. I'm hoping no more weird flare-up in between so I can have some normalcy in my life. Plus my BFF's wedding is day 9 after infusion, and I really need to be feeling great on that day. I have responsibilities as a bridesmaid plus I don't want to disappoint her by being a party-pooper cause of my Crohn's, but I know she is understanding.
So my doctor and I have an appointment 8 days after my infusion to monitor how I am doing, and I have to have blood drawn before the appointment so they can see how the remicade is reacting with my body. If I am sick when I go to this appointment, he will schedule me for an intestinal CT scan, and possibly a specific blood test to see if I am developing an allergic reaction to Remicade. I really hope this isn't the case because what I've seen my medical options are severely limited, and I've almost completely ruled out Humira since I don't want myself or family injecting me. Anyone been on or still on Humira? What have you experienced? Am I being a big chicken? Help a girl out, please.
Another reason why my boyfriend is the one and how I knew. Let's face it fellow Crohnies we do not always get the choice about our gas, and it's not always sunshine, rainbows, and a bed of tulips. Dating means that you still don't do certain things in front of one another or at least you're not suppose to. I can definitely admit I was the first one to fart in this relationship, but once I did we crossed a bridge and haven't looked back. Although the first one I let rip was on accident, and really rancid....I was so embarrassed I wanted to cry. We were leaving our mall and walking to the truck, and I was having a flare-up and let one slip while walking and thought OK it will air out before we get to the vehicle, and no biggie. Boy was I wrong...it smelt the whole truck up he rolled down the windows, and I just apologized profusely. He was so sweet...he said everyone does it, who cares, but are OK? We can head home, we don't have to go to X (I don't remember where we were headed). Don't get me wrong I was still terrified, but he did calm me down a little, and at least made me feel as though he didn't mind although I'm sure he did. Heck, even I wanted to hang my head out the window like pooches do. He's so understanding, and has been since day 1. I love him dearly, and am so appreciative that he loves me for me (Crohn's and all)
I know I still have to write about what happened at the hospital, and I am trying to work up the courage to. It's one of those moments that was so personally scary that talking about it is difficult. Please bear with me...I will tell you what happened, but I also want to keep everyone updated on what's going on with me currently. Until next time, Take care.
Monday, April 15, 2013
Thursday, April 11, 2013
Being my doctor's first ;)
Sorry I haven't written in a few days. I meant to write every other day, but work has been crazy busy and by time I get home I just want to make dinner and then relax on the couch with my boyfriend until bedtime. Plus these last 3 days my neck has been so stiff and tight I can't even turn my head, and I've called 3 license massage therapists and none of them can help me...TALK ABOUT FRUSTRATING!!
So now...back to my trip to the ER. I had been sent down for a CT scan, and the techs started the scan and immediately found 2 pockets of fluid in my abdominal area. The fluid had been coming out of my surgery site. I had an adhesion leak after surgery.
Side note about this. At my pre-op my surgeon had been very confident in his ability to resection my intestine and not have any issues. He also had never had an adhesion leak in any of his previous surgeries. WELL, dun dun dun surprise Annika's body has to be difficult. I was his very first adhesion leak. See my surgery went as planned, and I seemed to be healing properly when they released me from the hospital. But like I just said, my body had to be difficult, so my intestines although stitched together decided that they wouldn't grow back together which left an opening that allowed fluids & digested food to leak into my body. That became infected because it's waste that is inside your body pushing against organs, and the pain was immense.
The doctors had to relieve the pressure that was on my organs caused by the pooling fluids, and also remove the fluids from my body since they are toxic to my system. So 2 tubes would have to inserted and the pool would have to be puncture and most sucked out, and then the tubes would remain until the pooling level was less than 10cc. So I was given another diluadid and sent to a CT operating room area where they could use the scan to see the needle placement, and make sure they were puncturing the fluids. The doctors decided they would try for the one in my back first, and I thought they were crazy. Here I am a girl in terrible stomach pain and they need me to lay on my stomach, but I should of known how well the diluadid worked...I rolled over slowly still hesitant, but felt no pain at all until they got the needle close to the fluid sac. The needle and tubing didn't hurt at all, until they were unable to penetrate (Hate that word) the pooling. I remember screaming out in pain, crying, and pleading with the technician there to stop. After 3-4 times of them trying to poke through they finally were able to, and what came out was the most disgusting fluid that was brown and had small floaty things in it, and yeah it was just nasty. I couldn't keep my eyes off of the cylinder they were filling though, and the doctors removed 600cc from my back, and with that tubing in place were now ready to start on the front pouch. I don't remember the needle placement in my stomach because the drugs make you loopy, and they had no issue with poking the front fluid pouch so I can recall any pain. The doctors had extracted 600cc from my front pouch as well, and with all tubes in place each tube was then attached to their own bag.
I was instructed that I would remain in the hospital until my fluid leakage levels were under 100cc, and I would not be allowed to eat because I needed to be on COMPLETE bowel rest so I had a Hickman placed. A Hickman is a port that goes in just below the collar bone, and the line runs right into the artery that enters the right atrium. Outside the port are 2 lines, 1 is used for feeding (TPN) and 2 is used for administering medicine. The lines have to be cleaned out every morning and every night with saline.
There I was stuck in the same hospital room where I was right after surgery....I was even in the same bed, the nurses thought they were doing me a favor. I was not allowed to eat or drink anything. I was given a swab and a cup of ice water to keep my mouth from drying out. I would be "fed" TPN, which is a large bag of your body's daily nutrient requirement, and calories to maintain weight. Since the liquid is going straight to your heart then there is no need for any digestion, and the heart mixes the liquid with blood then sends it to its appropriate places.
So I was unable to eat, and now had 3 tubes just hanging out around me on my bed. I spent my days watching Food Network because I'm a glutton for punishment, and my boyfriend was there every day before he had to work and would allow me to smell his food. What a loving man :) I know it sounds weird to say I smelled food, but not allowed to eat it. I missed it so I just sniffed it and thought about how good it would taste if I could eat, and imagined I was full. I was never full, and always felt hungry even with my TPN. Finally after 5 days my leakage had decreased to about 110cc a day in each bag, and my surgeon felt that I may be able to go home in the next day. Best news ever for anyone whose ever been stuck in a hospital bed. Needless to say I was ecstatic to bust out of that Popsicle stand, but once again my body had to be difficult.
I'm going to end here for the day sorry for the cliffhanger again, but not really sorry because it means you have to return to find out what happened. Take care of yourself!
So now...back to my trip to the ER. I had been sent down for a CT scan, and the techs started the scan and immediately found 2 pockets of fluid in my abdominal area. The fluid had been coming out of my surgery site. I had an adhesion leak after surgery.
Side note about this. At my pre-op my surgeon had been very confident in his ability to resection my intestine and not have any issues. He also had never had an adhesion leak in any of his previous surgeries. WELL, dun dun dun surprise Annika's body has to be difficult. I was his very first adhesion leak. See my surgery went as planned, and I seemed to be healing properly when they released me from the hospital. But like I just said, my body had to be difficult, so my intestines although stitched together decided that they wouldn't grow back together which left an opening that allowed fluids & digested food to leak into my body. That became infected because it's waste that is inside your body pushing against organs, and the pain was immense.
The doctors had to relieve the pressure that was on my organs caused by the pooling fluids, and also remove the fluids from my body since they are toxic to my system. So 2 tubes would have to inserted and the pool would have to be puncture and most sucked out, and then the tubes would remain until the pooling level was less than 10cc. So I was given another diluadid and sent to a CT operating room area where they could use the scan to see the needle placement, and make sure they were puncturing the fluids. The doctors decided they would try for the one in my back first, and I thought they were crazy. Here I am a girl in terrible stomach pain and they need me to lay on my stomach, but I should of known how well the diluadid worked...I rolled over slowly still hesitant, but felt no pain at all until they got the needle close to the fluid sac. The needle and tubing didn't hurt at all, until they were unable to penetrate (Hate that word) the pooling. I remember screaming out in pain, crying, and pleading with the technician there to stop. After 3-4 times of them trying to poke through they finally were able to, and what came out was the most disgusting fluid that was brown and had small floaty things in it, and yeah it was just nasty. I couldn't keep my eyes off of the cylinder they were filling though, and the doctors removed 600cc from my back, and with that tubing in place were now ready to start on the front pouch. I don't remember the needle placement in my stomach because the drugs make you loopy, and they had no issue with poking the front fluid pouch so I can recall any pain. The doctors had extracted 600cc from my front pouch as well, and with all tubes in place each tube was then attached to their own bag.
I was instructed that I would remain in the hospital until my fluid leakage levels were under 100cc, and I would not be allowed to eat because I needed to be on COMPLETE bowel rest so I had a Hickman placed. A Hickman is a port that goes in just below the collar bone, and the line runs right into the artery that enters the right atrium. Outside the port are 2 lines, 1 is used for feeding (TPN) and 2 is used for administering medicine. The lines have to be cleaned out every morning and every night with saline.
There I was stuck in the same hospital room where I was right after surgery....I was even in the same bed, the nurses thought they were doing me a favor. I was not allowed to eat or drink anything. I was given a swab and a cup of ice water to keep my mouth from drying out. I would be "fed" TPN, which is a large bag of your body's daily nutrient requirement, and calories to maintain weight. Since the liquid is going straight to your heart then there is no need for any digestion, and the heart mixes the liquid with blood then sends it to its appropriate places.
So I was unable to eat, and now had 3 tubes just hanging out around me on my bed. I spent my days watching Food Network because I'm a glutton for punishment, and my boyfriend was there every day before he had to work and would allow me to smell his food. What a loving man :) I know it sounds weird to say I smelled food, but not allowed to eat it. I missed it so I just sniffed it and thought about how good it would taste if I could eat, and imagined I was full. I was never full, and always felt hungry even with my TPN. Finally after 5 days my leakage had decreased to about 110cc a day in each bag, and my surgeon felt that I may be able to go home in the next day. Best news ever for anyone whose ever been stuck in a hospital bed. Needless to say I was ecstatic to bust out of that Popsicle stand, but once again my body had to be difficult.
I'm going to end here for the day sorry for the cliffhanger again, but not really sorry because it means you have to return to find out what happened. Take care of yourself!
Saturday, April 6, 2013
Surgery and the beginning of what followed
So on June 26, 2012 I was scheduled for my resection surgery. We called the night before and were told to arrive at 7:30 am. We'd be the 1st surgery of the day, which I thought would be best. My mom, boyfriend, and step-dad went to the hospital with me, and we waited in a waiting room for what seemed like forever. This absolutely did not help my nerves. I was a 23 year old who had never had a hospital stay before or any type of surgery. I'd only ever broken my pinkie toe and cracked a rib before; both of which can not be fixed by visiting a doctor so I had let them heal on there own. Finally they take you into a bed and waiting chair room area that is separated by shower curtains. I changed into the dress that doesn't have a back, and man did I wear that gown well :) I was the best dressed patient there! I make jokes when I'm uncomfortable, similar to Chandler from Friends, and that's all I could do until they wheeled towards surgery. My surgeon came in to make sure I was holding up well, and I responded with "Well how did you sleep?, Are you well rested?, Did you eat so you're not hungry?, & Are you in a good mood?" Once he responded with appropriate answers I told him OK I'm ready. Then I don't remember anything.
After surgery, I was drugged pretty good, but some family stopped by to make sure I was holding up. I was advised to not do much moving as my abdominal muscles had been torn and needed to heal. I was informed that I had 2 other areas that were infected, but not as badly as the portion that had been removed. So I spent 3 days in the hospital and then I released. The worse car ride I ever had was on the way home from the hospital. It was awful, I was still drugged, dazed, and every bump made me sick. I returned home, and my boyfriend and friend Tori were there waiting for me. She had driven from Oneonta to spend my 1st week home with me. She was the best nurse....she helped tremendously, and always made sure I took my medicine. I had some abdominal pain, but I assumed it was just from me pulling myself up on the couch. When your abdominal muscles are torn you learn real quick that every movement requires abdominal muscles, and it takes a few minutes to move at all. So I was slow at getting up, and spent the week pretty much confined to the couch, and watched a lot of Netflix. Other down side is when everyone tries to make you smile, and you end up laughing...it hurt to laugh. My abdominal pain seem to be getting worse not better, but I didn't think much of it, and Tori returned back home. My boyfriend would spend every day with me until he had to go to work (at the time he worked 2nd & 3rd shift), and by time he left usually my mom was home.
So about 2 1/2 weeks after surgery I awoke one morning in the most excruciating pain. I was unable to lift myself from my bed. So I laid there screaming for my mom, but the fans were on since it was summer so I was drowned out. I had tried calling her from my cell phone, but that didn't work either. So I had no other choice but to try and get myself out of bed. It took me 45 minutes to get out of bed. I can not explain how bad I hurt, I was crying because every move, turn, motion, even breathing hurt, and I've always thought myself to have a pretty high tolerance for pain. I woke my mom, and she preceded to call my surgeon's office for the on call doctor. He called back right away and instructed us to go directly to E.R., which we were planning on anyway but he had notified them of my arrival. Once we arrived in E.R. they have to ask all the typical questions, and in between my sobbing I did my best to answer. I described my pain, told them my height, weight, that I just had surgery, and when they asked me to rate my pain I just looked at the nurse as tears rolled down my face, and she goes I'm guessing a 10 and I nodded. To this day (although it's only been approx. a year later) I have never felt such a pain. I was given a bed and room in E.R., and at this time my boyfriend was training in Ohio so he couldn't be with me. I'm sure he felt terrible about not being there.
A nurse came in and asked if I'd like some Dilaudid, and I declined.... I'm not big on drugs, but he wrote the order in so it could be filled if I wanted. The gastro dr. that was on call came in, and started pushing on my stomach, and I winced and nearly jumped out of my own skin. He suggested I take the dilaudid because he would be doing more poking and prodding of my stomach. I accepted, and then he poked some more before I even had the medicine and I just cried and screamed in pain. It took the nurse an additional 45 minutes before I received my dilaudid, which helped tremendously and I was able to nap. Mostly because dilaudid kicked my butt.
They had scheduled to send me for a CT to find out what exactly was going on, but I will write about what sent me to the hospital next time. If you have Crohn's or a relative who does please feel free to share your story. Any questions, insight, tid-bits please leave me a comment. Thanks for reading, and have a happy weekend :)
After surgery, I was drugged pretty good, but some family stopped by to make sure I was holding up. I was advised to not do much moving as my abdominal muscles had been torn and needed to heal. I was informed that I had 2 other areas that were infected, but not as badly as the portion that had been removed. So I spent 3 days in the hospital and then I released. The worse car ride I ever had was on the way home from the hospital. It was awful, I was still drugged, dazed, and every bump made me sick. I returned home, and my boyfriend and friend Tori were there waiting for me. She had driven from Oneonta to spend my 1st week home with me. She was the best nurse....she helped tremendously, and always made sure I took my medicine. I had some abdominal pain, but I assumed it was just from me pulling myself up on the couch. When your abdominal muscles are torn you learn real quick that every movement requires abdominal muscles, and it takes a few minutes to move at all. So I was slow at getting up, and spent the week pretty much confined to the couch, and watched a lot of Netflix. Other down side is when everyone tries to make you smile, and you end up laughing...it hurt to laugh. My abdominal pain seem to be getting worse not better, but I didn't think much of it, and Tori returned back home. My boyfriend would spend every day with me until he had to go to work (at the time he worked 2nd & 3rd shift), and by time he left usually my mom was home.
So about 2 1/2 weeks after surgery I awoke one morning in the most excruciating pain. I was unable to lift myself from my bed. So I laid there screaming for my mom, but the fans were on since it was summer so I was drowned out. I had tried calling her from my cell phone, but that didn't work either. So I had no other choice but to try and get myself out of bed. It took me 45 minutes to get out of bed. I can not explain how bad I hurt, I was crying because every move, turn, motion, even breathing hurt, and I've always thought myself to have a pretty high tolerance for pain. I woke my mom, and she preceded to call my surgeon's office for the on call doctor. He called back right away and instructed us to go directly to E.R., which we were planning on anyway but he had notified them of my arrival. Once we arrived in E.R. they have to ask all the typical questions, and in between my sobbing I did my best to answer. I described my pain, told them my height, weight, that I just had surgery, and when they asked me to rate my pain I just looked at the nurse as tears rolled down my face, and she goes I'm guessing a 10 and I nodded. To this day (although it's only been approx. a year later) I have never felt such a pain. I was given a bed and room in E.R., and at this time my boyfriend was training in Ohio so he couldn't be with me. I'm sure he felt terrible about not being there.
A nurse came in and asked if I'd like some Dilaudid, and I declined.... I'm not big on drugs, but he wrote the order in so it could be filled if I wanted. The gastro dr. that was on call came in, and started pushing on my stomach, and I winced and nearly jumped out of my own skin. He suggested I take the dilaudid because he would be doing more poking and prodding of my stomach. I accepted, and then he poked some more before I even had the medicine and I just cried and screamed in pain. It took the nurse an additional 45 minutes before I received my dilaudid, which helped tremendously and I was able to nap. Mostly because dilaudid kicked my butt.
They had scheduled to send me for a CT to find out what exactly was going on, but I will write about what sent me to the hospital next time. If you have Crohn's or a relative who does please feel free to share your story. Any questions, insight, tid-bits please leave me a comment. Thanks for reading, and have a happy weekend :)
Thursday, April 4, 2013
From bad to worse
I reconnected with my boyfriend in February 2012. At this point in time my medicine wasn't really working, and I was having flare-up after flare-up with a small appetite. I was worried when I was diagnosed about how to tell someone I was dating. Crohn's isn't ever going to go away, and I will always have my moments where I feel great or I feel totally crappy. Crohn's is a crappy disease quite literally, and those of you who have it know what I am talking about. Although it isn't anything that is transmitted it is hereditary. SO the conversation went a little like this... Me: "I have an auto-immune disease called Crohn's, which is a disease that attacks my intestines" Boyfriend: "OK, that's fine." I found out about a month later that the Boyfriend went home that night after date-night and researched what is Crohn's. WOAH!!! Talk about sign of GREAT Boyfriend....sign #1 that he was a keeper.
Well, as I was saying, I had started to get progressively worse. I was already receiving Remicade every 6 weeks with a high dosage, but I was starting to flare-up after 3 weeks. To go 3 weeks on medicine and then get severe abdominal pain, cramping, diarrhea, loss of appetite, more extreme weight loss, and mouth sores. It was the absolute worse, I was missing work, canceling plans, and lying uncomfortably trying to soothe my pain. So my gastro decided in April 2012 that we had exhausted our medicinal options, and sent me to a gastro surgeon.
I'd like to take a moment and tell everyone of my readers how great my surgeon was. His name is Dr. Todd Francone and he was AMAZING! He had a very good bedside manner minus crying, but what man handles crying? He has since left University of Rochester Medical Center and has moved to a location in Massachusetts. For anyone who has to have Gastro surgery of any kind and you are in Mass. then go see him.
Ok, my 1st meeting with Francone I went with my boyfriend with a list of questions in May of 2012. I found out that the surgery would be by laser as long as everything went well so minor scars. The doctors would be removing the part connection of my small and large intestine because that was where my infection had progressed so much that I had an obstruction (I was so swollen that food was not allowed to pass through & I ended up puking undigested food because my body was unable to pass it through my digestive tract.). He also said he'd take my appendix so that no doctor could ever try to blame my pain on appendicitis. Francone said that as long as everything went well my recovery would be 6-8 weeks. I'd be on antibiotics when it was all over to keep infections away, and I'd have to be careful with movement because my abdominal muscles would be torn and I needed them to heal properly. I'd stay in the hospital for 3 days then be released, and be on bed rest for 1 week after. If things didn't go right there was a chance of an adhesion leak (my intestines don't connect and then a hole forms at the site of surgery and digestive fluids leak into my body). My surgeon at the time of this conversation had NEVER had an adhesion leak, but I would become his first and that will follow in a later post.
My questions were:
"What's the likelihood of me waking with a colostomy?"
- Small as long as everything goes well, but if I have to cut out more then we'd fit you with a colostomy that would stay in for 6 months, and then we'd reconnect you intestines.
"Could it jeopardize my ability to carry a baby?"
- Most likely not because the surgery wasn't down in the rectal area.
"What will my eating habits be like after healing? Do I still have to follow my Crohn's diet?"
- You should be able to eat whatever you'd like because the infected area will be removed, but it would probably be best to stick with your diet."
"How long until my body starts to attack my intestine again, and I show inflamed intestines"
- Without returning to your medicine it could return in 5 years, but with your medicine you should have no infection for 10 years.
"Will I have to have surgery again in 10-20 years?"
-Yes, most likely.
And that was the end of that consultation. I went back for a pre-op 1 week before surgery in June 2012, and met with the nurse. I brought my mom along so she could hear or ask any questions that she had. The nurse said that because I have no other pre-existing conditions and before Crohn's have been healthy that my recovery should be quick. She said that in 3 weeks my pain would subside, and I could start returning to my activities. She stated that it'd take 6 weeks and I'd be good as new. So my mother walked out of there thinking this was minimal surgery and I'd do great, which was an awesome outcome but I reminded her of what the surgeon said could happen, worse case scenario wise. We left feeling good, and were given operation instructions. Next time I would see my medical staff would be at the hospital the morning of my operation. (To be continued...)
On a completely unrelated note...Today it reached 52 for a high here in NY which is a big deal. Spring may finally be here so I took the puppers for a walk. They both enjoyed it very much, as did I. Thank you spring for finally springing.
Well, as I was saying, I had started to get progressively worse. I was already receiving Remicade every 6 weeks with a high dosage, but I was starting to flare-up after 3 weeks. To go 3 weeks on medicine and then get severe abdominal pain, cramping, diarrhea, loss of appetite, more extreme weight loss, and mouth sores. It was the absolute worse, I was missing work, canceling plans, and lying uncomfortably trying to soothe my pain. So my gastro decided in April 2012 that we had exhausted our medicinal options, and sent me to a gastro surgeon.
I'd like to take a moment and tell everyone of my readers how great my surgeon was. His name is Dr. Todd Francone and he was AMAZING! He had a very good bedside manner minus crying, but what man handles crying? He has since left University of Rochester Medical Center and has moved to a location in Massachusetts. For anyone who has to have Gastro surgery of any kind and you are in Mass. then go see him.
Ok, my 1st meeting with Francone I went with my boyfriend with a list of questions in May of 2012. I found out that the surgery would be by laser as long as everything went well so minor scars. The doctors would be removing the part connection of my small and large intestine because that was where my infection had progressed so much that I had an obstruction (I was so swollen that food was not allowed to pass through & I ended up puking undigested food because my body was unable to pass it through my digestive tract.). He also said he'd take my appendix so that no doctor could ever try to blame my pain on appendicitis. Francone said that as long as everything went well my recovery would be 6-8 weeks. I'd be on antibiotics when it was all over to keep infections away, and I'd have to be careful with movement because my abdominal muscles would be torn and I needed them to heal properly. I'd stay in the hospital for 3 days then be released, and be on bed rest for 1 week after. If things didn't go right there was a chance of an adhesion leak (my intestines don't connect and then a hole forms at the site of surgery and digestive fluids leak into my body). My surgeon at the time of this conversation had NEVER had an adhesion leak, but I would become his first and that will follow in a later post.
My questions were:
"What's the likelihood of me waking with a colostomy?"
- Small as long as everything goes well, but if I have to cut out more then we'd fit you with a colostomy that would stay in for 6 months, and then we'd reconnect you intestines.
"Could it jeopardize my ability to carry a baby?"
- Most likely not because the surgery wasn't down in the rectal area.
"What will my eating habits be like after healing? Do I still have to follow my Crohn's diet?"
- You should be able to eat whatever you'd like because the infected area will be removed, but it would probably be best to stick with your diet."
"How long until my body starts to attack my intestine again, and I show inflamed intestines"
- Without returning to your medicine it could return in 5 years, but with your medicine you should have no infection for 10 years.
"Will I have to have surgery again in 10-20 years?"
-Yes, most likely.
And that was the end of that consultation. I went back for a pre-op 1 week before surgery in June 2012, and met with the nurse. I brought my mom along so she could hear or ask any questions that she had. The nurse said that because I have no other pre-existing conditions and before Crohn's have been healthy that my recovery should be quick. She said that in 3 weeks my pain would subside, and I could start returning to my activities. She stated that it'd take 6 weeks and I'd be good as new. So my mother walked out of there thinking this was minimal surgery and I'd do great, which was an awesome outcome but I reminded her of what the surgeon said could happen, worse case scenario wise. We left feeling good, and were given operation instructions. Next time I would see my medical staff would be at the hospital the morning of my operation. (To be continued...)
On a completely unrelated note...Today it reached 52 for a high here in NY which is a big deal. Spring may finally be here so I took the puppers for a walk. They both enjoyed it very much, as did I. Thank you spring for finally springing.
Monday, April 1, 2013
My day to day
This is my daily regiment of medicine, and add an infusion every 6 weeks brings my medicine count to 5 types. I am currently taking Pentasa (the big blue pill), a multi-vitamin (the yellow pill), low-dose aspirin (the small white one), a teaspoon of Metamucil (not pictured), and Remicade. With my issue swallowing pills this is always a real fun time for me.
So my day to day varies with my Crohn's and that's the worst part. I could wake up and feel great and end up having a good day. I also could wake up and feel great and then have a flare-up that could ruin part or all of my day. I may wake up and feel bad because of a flare-up and that could last all day, or it disappear in a few hours or so. The biggest sign that I am not feeling well is I begin to hunch over when I am standing or just sit down all together.
Today I went to work at 6:30am and I was feeling fine. I didn't have any flare-up issues, no pain, still have sores from getting sick last week, no abdominal cramping, no fever, and no reason to feel awful. So we went to our first 2 places and cleaned them with no issues. Well then we went to our 3rd and 4th house, and I started to have abdominal pain and cramping so I began to hunch. I am now all curled up on the couch with my computer while watching some Netflix movies.
This is the hardest part of being a Crohn's Casualty; the inconsistency in my day to day lifestyle. Here's to hoping that tomorrow is a better day, and that I can make it through the 5 big houses that we have to clean.
COMPLETELY UNRELATED... to Crohn's this past weekend I spent in Oneonta thanks to my wonderful boyfriend and friends. They surprised me with a weekend getaway for my birthday. I had a great time visiting Fly Creek Cider Mill and picking up some bottles of the Raspberry-Apple Hard Cider, it's my absolute favorite, and living so far away I can't exactly get a bottle at any point in time so we bought 3. We went to dinner at The Depot, which makes wings with a garbage sauce (all their sauces combine) it's so good so I ate them even though the fried food didn't feel so hot digesting. See Seth and I have been eating rather healthy lately because it's just better for us. Then we finished our night by bowling, and I won the first game with a score of 145, and almost placed last the 2nd game when I bowled a 102. I was just proud to break 100 both times. We stayed at a Holiday Inn Express, and it was very nice. Being a housekeeper I had to inspect the room before I said "OK we can stay." Since the last place I stayed was anything but sanitary looking this was a breath of fresh air. We very much enjoyed our weekend, and I'm so glad I got to see my Oneonta friends since it seems to be that we only see each other 2x a year. That's the sad part about growing up and moving away you only have contact via phone, facebook, or when they read my blog. I'm just grateful that I have some friends left in NY with me even though they are 3.5 hours away instead of running away to Florida like my BFF. Luckily it's almost her wedding day so I will see her too. Well I've ranted enough about my birthday and friends, and I'll continue my Crohn's life later. I hope everyone has a great start to April and there week. I'm placing a photo from my birthday of my boyfriend and I. I was rather festive :)
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