I know that I haven't posted a blog in a long time. Life gets busy and I don't find time to write down my thoughts and feelings. Much has happened in the last for months. Good and bad. At least the bad haven't been as bad as they could be. There have been some new developments with my Crohns that have put me in a very serious position.
In February I came face to face with a decision. My husband and I had the luxury to plan a trip with friends to watch the super owl in Vegas. This was going to be second time and first with just friends so I was pretty excited. A couple weeks before the trip I started noticing some weird things going on. I had developed a painful lump in my groin. Now this wasn't very unusual as my glands tend to get irritated often. The strange thing was that the closer to Vegas the larger and more painful this lump got. This doesn't usually happen. Usually the swelling goes away on its own. So I decided that I would wait until after Vegas as I really didn't want the doctor to tell me not to go. As the weekend went the worst the situation got and by the end if the weekend it hurt to wear tight pants and in some cases walk. This was starting to remind way too much of my abscess that sent me to the hospital in 2012. When we were on our way home I was very relieved and dead set on seeing my doctor ASAP.
Luckily I was able to see my doctor that week. I told him all about my symptoms. He too was concerned about an abscess so he laid out a plan that started with an exam. It turned out that the lump in my grok. Was nothing but an inflamed gland. But the inflammation was the worrisome part because that means that another part of my body was no in good shape. Now I have been dealing with a fistula or two so my doctor thought that maybe there was an abscess that had formed stemming from the fistula. I had an exam, CT scan and an appointment with a surgeon to determine what was happening and what needed to be done. The bad news is that the fistula has tunneled to another organ in my body but the good news is that the fluid from the abscess is draining so I'm in no immediate danger and that surgery is not an option. The next topic for discussion was treatment. By no means is having an abscess a good thing so I need to fix that.
My Naturopathic doctor suggested that I see a GI doctor within his network so that he could be in the loop of my treatment better. I went to see Dr. Tobin of Seattle Gastroenterology. He was nice enough doctor who talked to me about treatment. What he suggested was that I get on a biologic drug which show to be more effective in treating more complicated cases of Crohn's, which I happen to have. (lucky me) So we went over the different brands basically. We settled on Humira because it was a self administered drug. I already take B-12 via IM injection so I thought yeah this will be easy. I left with a good outlook on things. I had to wait 2 weeks for the medication to get approved and mean while my naturopathic doctor had prescribed some antibiotics to bring down the abscess so that A I would get relief and B so it wouldn't get worse when I started Humira. Humira is an immunosuppressant drug that inhibits your body to fight infections. If I still had a raging abscess while on this drug then it would do more harm then good.
Also while I waited for approval from my insurance I started searching Humira on line more. I wanted to know how it was administered and what people had to say about it. My doctor never covered the the details about each drug. Turns out that a lot of people say the medication stings pretty bad going in, some get a large welt after and some even have to take a Benadryl because of itching and rash. Someone described the feeling as battery acid being injected in her leg. I heard that this is because the liquid needs to be refrigerated and warming it up to room temperature helps. Other tips were to numb the area with an ice cube before injecting. I also found out that the first time you take it you have to take 4 syringes, then 2 two weeks later and then 1 every two weeks. WOW.
The more I found out about this drug the less and less I like it. I don't want to take something every two weeks that i'm going to have to ice my leg down for and have it feel like i'm injecting fire in my leg or stomach for 30 seconds. 30 seconds is a long time for pain. So I called back my doctor and said you know what Remicade isn't sounding that bad right about now i'd like to switch please. The doctor approved of my concern for switching and so we waited again for the approval from Premera. (side note- Remicade is also a immunosuppressant but it is given via IV injection. You receive it over a couple of hours time every 3-4 months. I have had this before in 2012 before my surgery. I know A I am not allergic and B it has been around for longer and has more research.)
After a few weeks I got a denial letter in the mail from Premera because I didn't try Humira first they would not approve Remicade. I was very upset about this. I called my doctor and spoke with his nurse about what could be done. She said that the doctor talked with the insurance and tried to fight for me but the insurance wouldn't budge on their decision. My secondary insurance said that the medication was approved under my plan but they couldn't tell me until they were billed. That means that what ever percent would be covered after the procedure was don't.However I wasn't given a 100% answer of assurance since they can't tell you unless the procedure has already been done. So I am siting there with weighing the option of just getting the Remicade and possibly paying 5000 out of pocket plus other costs. After talking to the nurse and medical billing 3-4 times, calling Premera 3 times, crying and having a full on nervous break down, and discussing things with my husband I caved in and decided that Humira was my only option. I felt let down and angry with my insurance for forcing me to take a drug I wasn't comfortable with or taking not treatment at all. I was hopeless and very very angry.
Fast forward 2 and a half weeks and I am less than 24 hours away from taking Humira for the first time. I pick up my starter kit today which cost 100 dollars and tomorrow morning I meet with a nurse who will explain how it works, demonstrating on me and then letting me try. A training then call it. My husband will be there to support me as I do this even though I really don't want to and I think I might have him inject me with one so that later on if I don't want to do it then he can for me. I am nervous for what it will feel like and what will happen to me afterward. My hope is that I will go into Anaphylaxis so that I won't have to take the Humira anymore and be switched to Remicade or at the least I have some kind of allergic reaction even on a very small scale to complain about. Things could turn out fine and I am just being a big baby about it. Speaking of babies, Humira and babies don't mix so as long as I am on it I won't be able to breast feed but that also tells me that I shouldn't be pregnant and on this drug. Not that I am planing on having babies anytime soon but you never know whats going to happen.
Life just keeps getting more and more complicated. hopefully I can update about the outcome of the Humira before another 3 months passes.
XOXO
Wednesday, May 7, 2014
Tuesday, November 5, 2013
Falling off the Wagon
Yes it is true I have fallen off the wagon and now I am running behind it to catch up.
It all started when I was feeling amazing getting cured from my ailments and I thought well if I am doing so well then why not have a little break. What real damage could it do since I have been going strong for 6 month now? Silly thinking, I know, but I really thought I was invincible and good to go at that point. That break happened to be my Honeymoon.
Side note for those that don't know I got married! On August 24th in the lovely town of Port Townsend in their state park. It was absolutely beautiful and exactly what I wanted! The only thing I would have changed was having it go on longer! I couldn't have asked for a more perfect weekend either. My family from Iowa came out and that was amazing because we haven't seen each other in years. My family from Missouri and Cali came and all my dearest friends. Everyone made it so special and unforgettable. Here are some pictures.
We wished that we could have partied with everyone longer but we had to get on a plane the very next morning. We had to wake up around 5:30 AM!! Yikes was that tough after going to bed around 1:30...
Here is where the story begins.
We planned out Honeymoon in Cabo San Lucas, Mexico. We have been there before and we knew we were going to have a blast. Robert and I kind of struck a deal that I could cheat some on the Honeymoon. We were going to be going to buffets, dinners and bars with tons of delicious food and I didn't want to check myself. I wanted to indulge and enjoy my Honeymoon. So that is exactly what I did. I started out slow though. Even the first night there we ordered room service and the first meal I had in Mexico was completely SCD legal. My habits were still sticking which was good. That next morning we went to breakfast and I had a few yummy pastries and some tortilla chips with sauces that I didn't know the ingredients to. I was taking a walk on the wild side. The wild side of my normal culinary routine.
As the days went on I was eating everything I wanted. I had pastries, desserts, cocktails, carbs, sauces, sugar. Everything I wasn't supposed to have. The weird this was that when I had to go it was the best bowl movements I had had in forever. I was regular as regular could be. I was shocked and so I thought maybe I am all better. So I just kept on eating what ever I wanted even when we came back from the Honeymoon.
It has been exactly 2 months and 2 days since the Honeymoon was over. Not to say that I haven't tried to get back on track with SCD but I have not been successful. I have been doing very good durning the week but once the weekend hits we tend to order out and then I get all the temptations of potatoes, bread, carbs, sugar, sauces. OMG!!! I literally can't stop my self. In addition to gaining like 15 pounds I am having an extremely hard time saying no this go around. I know that my symptoms have started back up and that I need to stop but the devil on my shoulder keeps whispering in my ear "Do you remember how good this all tastes. Eat it. Don't think about the consequences." Where is the angel at anyway? I think she feel asleep or is on vacation. :(
I am now updating my blog in hopes that I will better be able to hold my self accountable and responsible for my actions. Hoping that this will remind and motivate me to be better and eat clean so that I can stay Crohn's Disease free once again. Food is probably the hardest struggle for me and it has been for my whole like. Going from an over weight kid to an underweight young adult I have seen both sides of the spectrum of eating disorders and this diet is tougher that all of that.
Please pray, send good vides or good thoughts my way. I need everything I can get to stay on track.
Thanks everyone! Till next time.
It all started when I was feeling amazing getting cured from my ailments and I thought well if I am doing so well then why not have a little break. What real damage could it do since I have been going strong for 6 month now? Silly thinking, I know, but I really thought I was invincible and good to go at that point. That break happened to be my Honeymoon.
Side note for those that don't know I got married! On August 24th in the lovely town of Port Townsend in their state park. It was absolutely beautiful and exactly what I wanted! The only thing I would have changed was having it go on longer! I couldn't have asked for a more perfect weekend either. My family from Iowa came out and that was amazing because we haven't seen each other in years. My family from Missouri and Cali came and all my dearest friends. Everyone made it so special and unforgettable. Here are some pictures.
The Pre pre look
The Ceremony
A close up, I love how the photographer made me feel
like model in a wedding magazine!
I had to have this gigantic tree in a shot.
Throwing my Bouquet!
Details shot of the rings and the bouquet.
Me and my husband in front of our venue.
The Friends' Barn.
Here is where the story begins.
We planned out Honeymoon in Cabo San Lucas, Mexico. We have been there before and we knew we were going to have a blast. Robert and I kind of struck a deal that I could cheat some on the Honeymoon. We were going to be going to buffets, dinners and bars with tons of delicious food and I didn't want to check myself. I wanted to indulge and enjoy my Honeymoon. So that is exactly what I did. I started out slow though. Even the first night there we ordered room service and the first meal I had in Mexico was completely SCD legal. My habits were still sticking which was good. That next morning we went to breakfast and I had a few yummy pastries and some tortilla chips with sauces that I didn't know the ingredients to. I was taking a walk on the wild side. The wild side of my normal culinary routine.
As the days went on I was eating everything I wanted. I had pastries, desserts, cocktails, carbs, sauces, sugar. Everything I wasn't supposed to have. The weird this was that when I had to go it was the best bowl movements I had had in forever. I was regular as regular could be. I was shocked and so I thought maybe I am all better. So I just kept on eating what ever I wanted even when we came back from the Honeymoon.
It has been exactly 2 months and 2 days since the Honeymoon was over. Not to say that I haven't tried to get back on track with SCD but I have not been successful. I have been doing very good durning the week but once the weekend hits we tend to order out and then I get all the temptations of potatoes, bread, carbs, sugar, sauces. OMG!!! I literally can't stop my self. In addition to gaining like 15 pounds I am having an extremely hard time saying no this go around. I know that my symptoms have started back up and that I need to stop but the devil on my shoulder keeps whispering in my ear "Do you remember how good this all tastes. Eat it. Don't think about the consequences." Where is the angel at anyway? I think she feel asleep or is on vacation. :(
I am now updating my blog in hopes that I will better be able to hold my self accountable and responsible for my actions. Hoping that this will remind and motivate me to be better and eat clean so that I can stay Crohn's Disease free once again. Food is probably the hardest struggle for me and it has been for my whole like. Going from an over weight kid to an underweight young adult I have seen both sides of the spectrum of eating disorders and this diet is tougher that all of that.
Please pray, send good vides or good thoughts my way. I need everything I can get to stay on track.
Thanks everyone! Till next time.
Tuesday, July 2, 2013
Juicing vs Extraction
Hey All,
It's been about a month since I've posted. I have been planning my wedding and that has taken a lot out of my free time. This post will be centered around my new efforts to get maximum nutrition with out the digesting of vegetables. I have been experimenting with juicing and extracting.
First of all I can not digest vegetables. Every time that I do they come out looking like they did after I chewed them up. For example; I eat a salad. When I look in the toilet after said salad I can still see the full leaf of the lettuce but it just looks like its been wilted and degraded a little bit. If I eat too many vegetables I get diarrhea. Its not fun at all. Not even when I would cook them would it work out too well. My logic was that if they were cooked they would be easier to digest then when raw. That was a bust as well.
So I got the idea that if I couldn't eat them the regular way then I would juice them and drink them. My dad got me a juicer in 2012 about May-ish. While I was home from the hospital for a small stint he brought it over and said that it would heal me. I of course in the midst of the most terrible part of that experience didn't want to hear about his supposed miracle cure. I gave it a try to make him happy but I got the worst stomach ache of my life, exaggerated, but it was painful. So I said no thank you. We kept it however and it sat in its spot in the kitchen waiting to be used again.
I had been juicing since the week after Memorial Day weekend. I have seen really positive results from it. I am pooping better. Not more partially digested food. I am going a lot less often however. I don't know if that is partial constipation or what. I like the way it is making me feel as well. I have more energy and clearer thinking and mind. Juicing is easy but the machine is so annoying to clean. It take about 15 minutes for juicing to cleaning to be done. The mixture of fruits and veggies that I have experimented with have turned out great. I love juicing as a part of my other solid foods I eat. I don't think that I could juice fast or anything. I get too hungry and then I binge on chicharron or something. The juicing I saw as a positive solution to my not eating vegetables. Not that I was looking for anything to change but I was gifted a present that I was really excited about.
My lovely Auntie Linda had the idea of getting me a Nutribullet. I started using that a few weeks ago. It was different since the flavor was not as sweet and the texture was very gritty and thick. The machine is basically a better version of the Magic Bullet. It pulverizes the fruits and veggies to a smoothie texture. It is suppose to give maximum nutrition from not only the flesh but the stems, seeds etc. I was just experimenting with fruit and veggie combos and when I was starting to like it I noticed that I had gone back to full blown diarrhea. I was actually passing the drink completely as is. I don't know the exact science of the whole thing but I think that the fiber was causing me to pass the shake at speeds that my body couldn't handle and there was no solidity that could take effect. I will still probably use it to have fruit smoothies because I can tolerate fruit just fine. I frequent Jamba Juice for the fruit only drinks and they are so good that I would like to make them at home and save time and money.
So I have decided that I just can't eat a vegetable in any form other than juice. I have been drinking juice again for half a week and everything is back to normal. Its amazing how fast the body bounces back. I just wish that some day I can eat a salad and a raw carrot.
It's crazy how my wants have changed from chips (although I could go for some at any time) to wanting to just eat a celery stick.
Its a crazy reality that I live now.
I hope that everyone enjoys their forth of july!
Till next time XOXO!
It's been about a month since I've posted. I have been planning my wedding and that has taken a lot out of my free time. This post will be centered around my new efforts to get maximum nutrition with out the digesting of vegetables. I have been experimenting with juicing and extracting.
First of all I can not digest vegetables. Every time that I do they come out looking like they did after I chewed them up. For example; I eat a salad. When I look in the toilet after said salad I can still see the full leaf of the lettuce but it just looks like its been wilted and degraded a little bit. If I eat too many vegetables I get diarrhea. Its not fun at all. Not even when I would cook them would it work out too well. My logic was that if they were cooked they would be easier to digest then when raw. That was a bust as well.
So I got the idea that if I couldn't eat them the regular way then I would juice them and drink them. My dad got me a juicer in 2012 about May-ish. While I was home from the hospital for a small stint he brought it over and said that it would heal me. I of course in the midst of the most terrible part of that experience didn't want to hear about his supposed miracle cure. I gave it a try to make him happy but I got the worst stomach ache of my life, exaggerated, but it was painful. So I said no thank you. We kept it however and it sat in its spot in the kitchen waiting to be used again.
I had been juicing since the week after Memorial Day weekend. I have seen really positive results from it. I am pooping better. Not more partially digested food. I am going a lot less often however. I don't know if that is partial constipation or what. I like the way it is making me feel as well. I have more energy and clearer thinking and mind. Juicing is easy but the machine is so annoying to clean. It take about 15 minutes for juicing to cleaning to be done. The mixture of fruits and veggies that I have experimented with have turned out great. I love juicing as a part of my other solid foods I eat. I don't think that I could juice fast or anything. I get too hungry and then I binge on chicharron or something. The juicing I saw as a positive solution to my not eating vegetables. Not that I was looking for anything to change but I was gifted a present that I was really excited about.
My lovely Auntie Linda had the idea of getting me a Nutribullet. I started using that a few weeks ago. It was different since the flavor was not as sweet and the texture was very gritty and thick. The machine is basically a better version of the Magic Bullet. It pulverizes the fruits and veggies to a smoothie texture. It is suppose to give maximum nutrition from not only the flesh but the stems, seeds etc. I was just experimenting with fruit and veggie combos and when I was starting to like it I noticed that I had gone back to full blown diarrhea. I was actually passing the drink completely as is. I don't know the exact science of the whole thing but I think that the fiber was causing me to pass the shake at speeds that my body couldn't handle and there was no solidity that could take effect. I will still probably use it to have fruit smoothies because I can tolerate fruit just fine. I frequent Jamba Juice for the fruit only drinks and they are so good that I would like to make them at home and save time and money.
So I have decided that I just can't eat a vegetable in any form other than juice. I have been drinking juice again for half a week and everything is back to normal. Its amazing how fast the body bounces back. I just wish that some day I can eat a salad and a raw carrot.
It's crazy how my wants have changed from chips (although I could go for some at any time) to wanting to just eat a celery stick.
Its a crazy reality that I live now.
I hope that everyone enjoys their forth of july!
Till next time XOXO!
Monday, June 3, 2013
Check up
I've been away from the personal keyboard for a while. I have been very busy with work and planning my wedding.
I wanted to do a quick check in and summarize what has been up with me. **I was going to share pictures but my USB cord is missing :( **
The past few months I have been hitting the gym to make sure that I stay fit and actually fit into my wedding dress. I also like to stay active since my day job is sitting at a computer desk for 8 hours. When I go to the gym I usually make sure that I do at least 30 minutes of cardio. I've been focusing on cardio to lose some inches. I haven't been since before Memorial Day. Definitely need to get back on it.
I have been having issues with another fistula for a while now. This one is not internal making abscesses but actually ends at the skins surface. Fluids are secreting out of it. I don't want to go into to much detail as I am sure no one wants to really know about. My doctor has said that SCD will cure it and I have been neglecting that diet lately. :(
Eating SCD has been really hard for me lately and I have to admit that I have been eating things that I shouldn't. I am not binging on bad things but I am eating bits and pieces here and there. I recently went camping over the Memorial holiday weekend. I was so jealous of everyones chips and beer, my camping staples in years past. I wanted to eat everything that I wasn't suppose to. Like I have said before I have an issue with food and I should probably seek counseling for it. I am starting to see and feel the repercussions of my actions and I need to get with the program again. I need to make some promises to my self that I will not break. My quality of life depends on it and its so much harder than I want it to be.
I recently celebrated 1 year since my surgery. I think back on it and I see that I really did undergo a major surgery. Most people might be scared but by the time surgery was a conversation I was very much ready for it. After being in the hospital, or my at home hospital, and basically immobile for months, going through pain that I have never felt before. That was my only hope to have my life back. After being depressed wishing for it all to be over, crying tears of frustration and loss of hope I was ready for it. There are so many emotions that come up when I think of that time and I can't describe them all. Just know that it was the hardest time of my life.
Just this last Saturday was Take Steps. If you don't know what that is, it is a walk fundraiser. Each year money is raised for Crohn's and Colitis research for a cure. These disease are forever. They don't go away with surgery, therapy or drugs. This is the second time I have done the walk. The first year was just about 1 week after I left the hospital. I had a really hard time with the walk. I had to be carried 3 times by my amazing fiance. By the time we were done I felt like I had run a marathon. That is how accomplished I felt. This year it was a piece of cake. I couldn't believe it was the same course. At the mid way point there is this hill that you can climb that has a steep climb to the top and a long slope back to the trail. I was able to climb that hill this year and it was so AMAZING! The littlest thing that people don't even consider completely made my day. It is incredible how far I have come.
Lastly I had a really positive experience talking with another fellow Crohnie. Her name was Madrilene. We met at West Seattle Bowl. This was right after the walk I was still wearing my Take Steps shirt and that is what really started the conversation. We talked about our experience. She was 41 and looked damn good by the way. She was a mother of two kids one was biological. She has had Crohn's since 14. She has had way more surgeries than me and more problems over the years than I have seen. There were two things that came out of that conversation for me. The good thing was that I know now that having kids it possible. I have been thinking that having kids isn't an option because of surgeries and fistulas and complications but she was facing some serious stuff when she gave birth. There's a little hope in my corner now.The other thing that was negative was that I realized I have a long way to go and my future could be really bad. I haven't been through half the stuff she had. However bad it was she was very positive and much like me in our perspective on life and sickness, pretty matter of fact. Either way it felt so good to talk to someone who knew everything I was saying and empathized with me. It was refreshing and I am so grateful for that time I had to talk to her. I even missed 4 frames of bowling. lol.
I wanted to make some promises to myself on here so that I am accountable.
It's been an emotional roller coaster to say the least. There are many more highs and lows to come I'm sure but I am hoping for more highs.
Until next time. XO
I wanted to do a quick check in and summarize what has been up with me. **I was going to share pictures but my USB cord is missing :( **
The past few months I have been hitting the gym to make sure that I stay fit and actually fit into my wedding dress. I also like to stay active since my day job is sitting at a computer desk for 8 hours. When I go to the gym I usually make sure that I do at least 30 minutes of cardio. I've been focusing on cardio to lose some inches. I haven't been since before Memorial Day. Definitely need to get back on it.
I have been having issues with another fistula for a while now. This one is not internal making abscesses but actually ends at the skins surface. Fluids are secreting out of it. I don't want to go into to much detail as I am sure no one wants to really know about. My doctor has said that SCD will cure it and I have been neglecting that diet lately. :(
Eating SCD has been really hard for me lately and I have to admit that I have been eating things that I shouldn't. I am not binging on bad things but I am eating bits and pieces here and there. I recently went camping over the Memorial holiday weekend. I was so jealous of everyones chips and beer, my camping staples in years past. I wanted to eat everything that I wasn't suppose to. Like I have said before I have an issue with food and I should probably seek counseling for it. I am starting to see and feel the repercussions of my actions and I need to get with the program again. I need to make some promises to my self that I will not break. My quality of life depends on it and its so much harder than I want it to be.
I recently celebrated 1 year since my surgery. I think back on it and I see that I really did undergo a major surgery. Most people might be scared but by the time surgery was a conversation I was very much ready for it. After being in the hospital, or my at home hospital, and basically immobile for months, going through pain that I have never felt before. That was my only hope to have my life back. After being depressed wishing for it all to be over, crying tears of frustration and loss of hope I was ready for it. There are so many emotions that come up when I think of that time and I can't describe them all. Just know that it was the hardest time of my life.
Just this last Saturday was Take Steps. If you don't know what that is, it is a walk fundraiser. Each year money is raised for Crohn's and Colitis research for a cure. These disease are forever. They don't go away with surgery, therapy or drugs. This is the second time I have done the walk. The first year was just about 1 week after I left the hospital. I had a really hard time with the walk. I had to be carried 3 times by my amazing fiance. By the time we were done I felt like I had run a marathon. That is how accomplished I felt. This year it was a piece of cake. I couldn't believe it was the same course. At the mid way point there is this hill that you can climb that has a steep climb to the top and a long slope back to the trail. I was able to climb that hill this year and it was so AMAZING! The littlest thing that people don't even consider completely made my day. It is incredible how far I have come.
Lastly I had a really positive experience talking with another fellow Crohnie. Her name was Madrilene. We met at West Seattle Bowl. This was right after the walk I was still wearing my Take Steps shirt and that is what really started the conversation. We talked about our experience. She was 41 and looked damn good by the way. She was a mother of two kids one was biological. She has had Crohn's since 14. She has had way more surgeries than me and more problems over the years than I have seen. There were two things that came out of that conversation for me. The good thing was that I know now that having kids it possible. I have been thinking that having kids isn't an option because of surgeries and fistulas and complications but she was facing some serious stuff when she gave birth. There's a little hope in my corner now.The other thing that was negative was that I realized I have a long way to go and my future could be really bad. I haven't been through half the stuff she had. However bad it was she was very positive and much like me in our perspective on life and sickness, pretty matter of fact. Either way it felt so good to talk to someone who knew everything I was saying and empathized with me. It was refreshing and I am so grateful for that time I had to talk to her. I even missed 4 frames of bowling. lol.
I wanted to make some promises to myself on here so that I am accountable.
- Stick to SCD- strict no matter how strong the craving is to cheat
- No wine- except on special occasions.
- Hitting the gym 4-5 days a week- staying strong and fit
- Join a Crohn's support group- can only enhance my mental health
- Stay positive- nothing negative can come from it!
Everyone help me stay on course. It takes a village. Anyway...
It's been an emotional roller coaster to say the least. There are many more highs and lows to come I'm sure but I am hoping for more highs.
Until next time. XO
Tuesday, April 23, 2013
SCD
I have never truly realized how indefinite my disease was until these last few days.
I ate a lot of almonds this last weekend and it was not the best idea. I was passing chewed up almonds just straight. It didn't feel good coming out either. I had the same experiences from a year and half ago. I have to keep telling myself "everything in moderation."
Since January I have been on this new diet that has had many positive reviews for curing Crohn's and other digestive diseases. I read the book Breaking the Vicious Cycle by Elaine Gottschall. It is like the SCD bible if you will. It explains in a pretty scientific way how sugars are the root of all evil in bodies like mine and wreak havoc in the intestine. So basically I can only have sugars that derive from fruits. No table sugar, no grains, not lactose like milk, ice cream and soft cheeses. I also can't have starchy things like potatoes and that family of vegetables. Now please don't take this as medical advice if your looking into this diet I am here simply to tell my story not lead anyone else's journey.
There are a whole mess of things that I can not enjoy anymore. And by the way it really sucks! I miss pizza, hummus, waffles, bacon, popcorn, bloodmarys and BEER!! etc. I am on the Paleo diet taken to the next level. There is a link here that goes into very great detail as to what I can and can not have.
http://www.breakingtheviciouscycle.info/legal/listing/
I have had to adapt the the new diet and make many changes. Once I started we threw away anything that came in a box. No cereal, crackers, cookies, granola bars ETC. I couldn't eat canned soup or top ramen. I had to make everything from scratch. Home made soups, fresh cut meat not lunch meat pre sliced. I can't eat sandwiches I eat lettuce wraps. In the beginning there is a period of time where you can only have homemade chicken soup, eggs, specific juices, homemade yogurt, plain gelatin with juice to flavor or broiled beef or fish. Try that for a few days and see if you can even handle it. Can you say boring.
I can't be all negative about it though. I have seen a drastic improvement in my symptoms until I went over board on the almonds this past weekend. I know now that if I just stick to it and really try then in the end I will have great results and I do have the ability to heal myself. Living a healthy life takes work in the world we live in know. I didn't realize that until I got on SCD. We have grown up in a world of convenience where we would rather microwave our meals or better yet drive to Mc Donald's and get our dinner in under a few minutes. Once my eyes have been opened up to all the bad that I was filling my body with I just can't go back to that. Never. I will admit that I do have a slight food problem. I get in these zones where I can't stop eating and other times when nothing seems to satisfy me expect the thought of eating a double cheese burger but then again I have a life long disease. I have been given the keys to the outcome of my future. Me going back to the way I ate before is like me driving off a cliff.
I think that this diet has given me a greater perspective of the person that I want to be and how I would want my children to be raised when and if they come later in the future. I want to be healthier, eat better exercise. Get out the house and off the couch. The world is worth living in. I see that kids know this. I watch them outside playing until they are forced inside by their parents.
Some where along the way I lost that. I want to gain that back.
Until next time.
I ate a lot of almonds this last weekend and it was not the best idea. I was passing chewed up almonds just straight. It didn't feel good coming out either. I had the same experiences from a year and half ago. I have to keep telling myself "everything in moderation."
Since January I have been on this new diet that has had many positive reviews for curing Crohn's and other digestive diseases. I read the book Breaking the Vicious Cycle by Elaine Gottschall. It is like the SCD bible if you will. It explains in a pretty scientific way how sugars are the root of all evil in bodies like mine and wreak havoc in the intestine. So basically I can only have sugars that derive from fruits. No table sugar, no grains, not lactose like milk, ice cream and soft cheeses. I also can't have starchy things like potatoes and that family of vegetables. Now please don't take this as medical advice if your looking into this diet I am here simply to tell my story not lead anyone else's journey.
There are a whole mess of things that I can not enjoy anymore. And by the way it really sucks! I miss pizza, hummus, waffles, bacon, popcorn, bloodmarys and BEER!! etc. I am on the Paleo diet taken to the next level. There is a link here that goes into very great detail as to what I can and can not have.
http://www.breakingtheviciouscycle.info/legal/listing/
I have had to adapt the the new diet and make many changes. Once I started we threw away anything that came in a box. No cereal, crackers, cookies, granola bars ETC. I couldn't eat canned soup or top ramen. I had to make everything from scratch. Home made soups, fresh cut meat not lunch meat pre sliced. I can't eat sandwiches I eat lettuce wraps. In the beginning there is a period of time where you can only have homemade chicken soup, eggs, specific juices, homemade yogurt, plain gelatin with juice to flavor or broiled beef or fish. Try that for a few days and see if you can even handle it. Can you say boring.
I can't be all negative about it though. I have seen a drastic improvement in my symptoms until I went over board on the almonds this past weekend. I know now that if I just stick to it and really try then in the end I will have great results and I do have the ability to heal myself. Living a healthy life takes work in the world we live in know. I didn't realize that until I got on SCD. We have grown up in a world of convenience where we would rather microwave our meals or better yet drive to Mc Donald's and get our dinner in under a few minutes. Once my eyes have been opened up to all the bad that I was filling my body with I just can't go back to that. Never. I will admit that I do have a slight food problem. I get in these zones where I can't stop eating and other times when nothing seems to satisfy me expect the thought of eating a double cheese burger but then again I have a life long disease. I have been given the keys to the outcome of my future. Me going back to the way I ate before is like me driving off a cliff.
I think that this diet has given me a greater perspective of the person that I want to be and how I would want my children to be raised when and if they come later in the future. I want to be healthier, eat better exercise. Get out the house and off the couch. The world is worth living in. I see that kids know this. I watch them outside playing until they are forced inside by their parents.
Some where along the way I lost that. I want to gain that back.
Until next time.
Wednesday, April 10, 2013
Warning: Female Related
So I don't know how appropriate it is to talk about menstrual cycles but I wanted to spend some time talking about how one will effect my Crohns. I never knew before that the reason my period was so horrible was because my Crohns symptoms were intensified. Now there aren't concrete facts that there is a connection with the Menstrual Cycle and an increase in Crohns symptoms but many women do experience it. Even now that I am on a special diet that has given me a lot of relief from pain I do notice that the 4-6 days that my period lasts are the worse 4-6 days of the month. Probably more so than the average women. We all hate periods. They are unpleasant on more than one level. I usually skip the gym that week as for me I find that more activity causes worse pain and cramping. I wear leggings mostly around the house and I am in a very very bad mood most the time. Robert can attest to that.
I use to think that I had some kind of menstrual disorder. I would have the worst cramps that would cause me to leave work early and retreat to my bed with a heating pad and a sleeping pill to get through. I would have the worst bloating to where I for sure knew that I had gained 10 pounds. I would have a very high increase in diarrhea. Most my friends would say "Oh I hardly ever have cramps or I don't have them at all. My period lasts like 3 days if that." I'm thinking to my self "What the heck is wrong with me?! I thought "Wow I probably have the worst period in the world." I even had friends and co workers suggest that I see an OBGYN about Endometriosis. I considered going to the doctor to at least get a prescription for pain medication for my cramping so that I could get through my work day!
After my Crohns was discovered I still hadn't connected the dots. Not until I started doing more research into Crohns and searching forums about other people and their experiences. I got curious about what other women experienced. I started searching the web. I went to google and simply typed in Crohns and periods. I came across all these sites with women talking about their symptoms being intensified during their period and some had full on Flare-ups during their period too. I even found pieces written about the topic. There was one that described that a certain hormone released during menstruation may have an effect on digestive diseases like IBS and IBD. I myself would like to see more research on this. It would be nice if there was something to alleviate some symptoms. I currently can't take anything over the counter for pain so my situation is a little harder than most.
Like Crohns itself it would be nice to have some answers. I live in a world of I don't knows. I don't know why I have Crohns and I don't know why it makes my period 10 times worse.
Hopefully I will get through with my heating pad and a comfy place to lay down.
Until next time!
I use to think that I had some kind of menstrual disorder. I would have the worst cramps that would cause me to leave work early and retreat to my bed with a heating pad and a sleeping pill to get through. I would have the worst bloating to where I for sure knew that I had gained 10 pounds. I would have a very high increase in diarrhea. Most my friends would say "Oh I hardly ever have cramps or I don't have them at all. My period lasts like 3 days if that." I'm thinking to my self "What the heck is wrong with me?! I thought "Wow I probably have the worst period in the world." I even had friends and co workers suggest that I see an OBGYN about Endometriosis. I considered going to the doctor to at least get a prescription for pain medication for my cramping so that I could get through my work day!
After my Crohns was discovered I still hadn't connected the dots. Not until I started doing more research into Crohns and searching forums about other people and their experiences. I got curious about what other women experienced. I started searching the web. I went to google and simply typed in Crohns and periods. I came across all these sites with women talking about their symptoms being intensified during their period and some had full on Flare-ups during their period too. I even found pieces written about the topic. There was one that described that a certain hormone released during menstruation may have an effect on digestive diseases like IBS and IBD. I myself would like to see more research on this. It would be nice if there was something to alleviate some symptoms. I currently can't take anything over the counter for pain so my situation is a little harder than most.
Like Crohns itself it would be nice to have some answers. I live in a world of I don't knows. I don't know why I have Crohns and I don't know why it makes my period 10 times worse.
Hopefully I will get through with my heating pad and a comfy place to lay down.
Until next time!
Tuesday, April 2, 2013
More of my hospital journey
So last time I wrote about my journey in the hospital up until I got nerve damage. After that I spent some time in the hospital for a week as the doctors tried to adjust my drain to stop this nerve from being irritated.
While in the hospital I was given Antibiotics. I was on about 3 at a time. I was getting these to hopefully heal my Fistula. There was one time when I was being visited by my friend Lisa that I had an allergic reaction. She was the only one with me in the room and suddenly I felt hives. They gradually got worse. I told the nurse that I needed her to come look at me and when she got to the room I started having trouble breathing and it felt like someone was sitting on my chest. I was given oxygen and a team of people were called to bring in an EKG. They announced it over intercom threw out the whole hospital. This whole time I was gripping Lisa's hand and I was scared that my throat was going to swell closed. Here is a picture of me right after.
You can see that my skin is still very red.
I ended up being fine but they again had to change my antibiotics. I had a special doctor that handled my antibiotics solely. He came to see me every morning. I had to be monitored for days to see if the new mix was working correctly. I was told that we can become allergic to anything at any time for absolutely no reason. Apparently I had this problem a few times. :)
While in the hospital I was given Antibiotics. I was on about 3 at a time. I was getting these to hopefully heal my Fistula. There was one time when I was being visited by my friend Lisa that I had an allergic reaction. She was the only one with me in the room and suddenly I felt hives. They gradually got worse. I told the nurse that I needed her to come look at me and when she got to the room I started having trouble breathing and it felt like someone was sitting on my chest. I was given oxygen and a team of people were called to bring in an EKG. They announced it over intercom threw out the whole hospital. This whole time I was gripping Lisa's hand and I was scared that my throat was going to swell closed. Here is a picture of me right after.
You can see that my skin is still very red.I ended up being fine but they again had to change my antibiotics. I had a special doctor that handled my antibiotics solely. He came to see me every morning. I had to be monitored for days to see if the new mix was working correctly. I was told that we can become allergic to anything at any time for absolutely no reason. Apparently I had this problem a few times. :)
This is the JP that was working great. They said that the new antibiotics were working great. It looks absolutely disgusting, I know. I had to live with that thing for months. I wouldn't wish it on my worst enemy.
They decided that I should get a PICC line and go home on an IV antibiotic regimen. To do the procedure they have to have the area sterile. Everyone in the room had to leave the room. The two ladies that did the procedure had to first do an ultrasound of my artery from my arm to my heart to measure how long of a tube they need. They basically put an IV from my arm to my aorta in my heart. It is important that everything is sterile because bacteria would go into my heart immediately. So after the ultrasound they scrubbed up in masks, gloves and all. Then they put a sheet over me and wouldn't let me see what was happening. They didn't want me to breath on the opening and contaminate the area. They gave me some local anesthesia stuck a big needle in my arm and fed the IV tube through. At the end I had two ends so that they could hook me up to do medications at once. It was one of the scariest things I've had to be awake to experience besides my gum graft but that happened long after this. Below are some pictures that I took of the PICC in action.
This is my Vancomycin. It looks like a baby bottle. Kinda weird.
And then I went home. I went home for 3 or 4 Weeks. I had a nurse come over every week and change the "dressing" on my PICC that is the plastic sticker that goes on top of the line to hold it in place and the gauze that goes over that. They also delivered medicine and supplies to me. I had an IV pole also for one of the Antibiotics. Life went back to normal kind of. I had to sleep in the living room on the hideabed because at that time we had no frame on the bed and I wasn't able to get up from the ground basically with out causing much pain to my lower abdomen and JP. So for weeks we slept in the living room. I took an extra week from work when I first came back to try to get over the pain I was having. Laying in bed all day was terrible. It was worse than being in the hospital because at least in the hospital I had a nurse to talk to and there were people checking on my through out the day. The comfort of being at home actually shifted and I wanted to go back to the hospital. I felt more comfortable there because I had a doctor I could call on. At home when things went wrong like the JP leaking or I had more pain I had to rely on myself and that made me very nervous and helpless feeling.
I ended up going back to the Hospital again when my fever came back again. It was a Saturday morning that I woke to chills and a hot forehead. This time I was brought to a different section of the hospital and the doctor started talking surgery. My GI doctor wouldn't let the surgery happen at Valley however. He wanted my at Harbor View where the surgeons had better experience with my special situation. The next morning an ambulance was sent to pick me up and I even got a going away full does of Dilaudid. We drove to Harbor View and when we arrived the ER was completely over run with patients and I wasn't transitioned very quickly. The doctors that checked m in pissed me off. It was the only time that I regretted switching hospitals. He questioned whether or not I had Crohn's even with the packet of records that was sent with me. I was given a vaginal and anal examination for reasons I don't think were ever explained with good reason. I felt violated by that doctor. Not only that but I wasn't getting my pain medication fast enough. They were so busy. My Mom, Dad, Grandma and Robert (my fiance) were all at the hospital and switching off being in the ER with me. The ER was a large room with cloth drapes as dividers. Some guy was brought in by the police and he was diagonal from me being treated for a head wound. There were lots of people coming in and out. I was in that ER for hours before they finally admitted me. The room was a single because I had a virus. I had to be quarantined until they could see that I was cured of it. Everyone had to wear full scrubs so that the virus wasn't taken out of the room.
This is an example. The doctors and nurses had to do this too. I felt bad for them. So much extra work. I know I would be annoyed if I had to do this.
When I was finally rid of the virus I had to get a room mate and was set on the track towards surgery. I spent a week getting X-rays and CT scans and they did blood work ETC. The worse part of the whole thing was when a guy from "radiology" came to look at the JP. He pulled and pushed the tube in and out and NO ONE at Valley ever did that. I think this guys was a idiot. I screamed out in pain and had to get extra Dilaudid. I was crying. It was horrific. It feels like your a lab rat. They do all this shit to you and you have to deal with it. our life is in the balance. :(
I was allowed to go outside for the first time. Robert wheeled me out of the room in my wheel chair. For the first time in weeks I was outside in the sun. It was really nice.
Here is a picture I made of that quick outing.
I finally felt like I was getting somewhere in my recovery. I was scheduled to have surgery on May 23th 2012. It was a wednesday. I remember the day of surgery. I was wheeled down to the pre op room and they were trying to discuss with me whether I wanted an epidural or IV drugs during and after the surgery. I said heck no to the epidural cause I wasn't having a baby so no one was going to stick a needle in my back. All I remember after that was saying goodbye to my mom and the walls starting to wiggle. I am told that my surgery was about 6 hours long. I don't remember anything until the next morning really. The surgery I had is called an Ileocecectomy. Usually done via laproscopy but I had other things that needed to be taken care of like my abscess. Here is what that all means.
This is surgery to remove parts of the ileum (last part of the small intestine) and the cecum (first part of the large intestine), and the ileocecal valve (a one-way valve that prevents fecal matter from returning from the large to the small intestine). The appendix is usually removed as well. An ileocecectomy is usually performed laproscopically ('keyhole' surgery), but if complications occur it may need to be performed by open surgery. Usually the bowel is resected and reconnected in the same surgery.
All of the above applies to what I had done.
Here is what I ended up with. A gapping hole and staples.
Recovery took a week and then I got to go home. It was hard to walk for a while my muscles were so sore from being cut open. I wish that I could have seen a little bit of my own surgery. It would have been interesting. When I got home I had these paper stickers that were suppose to be acting staples.
It looks like this.
Here is what I am working with now.
Now I am stuck with a very unattractive large scar and a weird dimple.
Thanks for reading as always. I am glad to get done with this long part of my story and ready to move on to better more current things.
I finally felt like I was getting somewhere in my recovery. I was scheduled to have surgery on May 23th 2012. It was a wednesday. I remember the day of surgery. I was wheeled down to the pre op room and they were trying to discuss with me whether I wanted an epidural or IV drugs during and after the surgery. I said heck no to the epidural cause I wasn't having a baby so no one was going to stick a needle in my back. All I remember after that was saying goodbye to my mom and the walls starting to wiggle. I am told that my surgery was about 6 hours long. I don't remember anything until the next morning really. The surgery I had is called an Ileocecectomy. Usually done via laproscopy but I had other things that needed to be taken care of like my abscess. Here is what that all means.
This is surgery to remove parts of the ileum (last part of the small intestine) and the cecum (first part of the large intestine), and the ileocecal valve (a one-way valve that prevents fecal matter from returning from the large to the small intestine). The appendix is usually removed as well. An ileocecectomy is usually performed laproscopically ('keyhole' surgery), but if complications occur it may need to be performed by open surgery. Usually the bowel is resected and reconnected in the same surgery.
All of the above applies to what I had done.
Here is what I ended up with. A gapping hole and staples.
Recovery took a week and then I got to go home. It was hard to walk for a while my muscles were so sore from being cut open. I wish that I could have seen a little bit of my own surgery. It would have been interesting. When I got home I had these paper stickers that were suppose to be acting staples.
It looks like this.
Here is what I am working with now.
Now I am stuck with a very unattractive large scar and a weird dimple.
Thanks for reading as always. I am glad to get done with this long part of my story and ready to move on to better more current things.
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