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.

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!

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. :)

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.