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.
Showing posts with label Boyfriend. Show all posts
Showing posts with label Boyfriend. Show all posts
Monday, April 15, 2013
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.
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