Why the Heck Am I Choosing to Get Scopes Done?

As some of you know, I was asked by the University of Chicago to be a part of one of their GI research studies. This study is being done to see why patients who have had an ileoanal anastamosis (JPOUCH... what I have) sometimes develop something called Pouchitis.

Now, I know what you're probably thinking - "what is Pouchitis?"
Well according to the Mayo Clinic website...

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"Pouchitis is an inflammation of the lining of a pouch that is surgically created in the treatment of ulcerative colitis and certain other diseases. Many people with serious ulcerative colitis end up having their diseased colon removed and the bowel reconnected with this procedure, called ileoanal anastomosis (IPAA) or J-pouch surgery.

Surgeons use the end of the small intestine (ileum) to create a pouch shaped like the letter J. The pouch is attached internally to the area just above the anus to hold waste before it's eliminated.

Pouchitis is a complication of IPAA that occurs in 23 to 46 percent of people who have the procedure. Symptoms can include diarrhea, abdominal pain and joint pain, cramps, fever, increased number of bowel movements, nighttime fecal seepage, fecal incontinence, and a strong feeling of the need to have a bowel movement."

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In more simple terms, Pouchitis is basically having the same symptoms of IBD that occurred before having the surgery. Well then why would you get the surgery if you might end up with the same symptoms? Pouchitis occurs in about 50% of patients who undergo this surgery. The research is being done to figure out WHY some people develop this complications when others don't. 

THERE IS GOOD NEWS THOUGH!

Pouchitis is usually treated by taking antibiotics (Cipro, Flagyl...) for about 10-14 days.

Most people respond to the antibiotics and symptoms will fade within the antibiotic course. There unfortunately are some people who will still relapse and will need to continue on long term, continuous antibiotic therapy.

So WHY AM I DOING THIS...?

 Well as a participant in the study, I agreed to get three "pouchoscopies" (kind of like a colonoscopy, but I don't have a colon and they are only going in the beginning part of my pouch). I had one done already in July, I'll have this one in November and then my final one in March. During the procedure, I will not be given any medications including sedation. YES, it is an uncomfortable procedure when you are fully awake... but at this point I've had it done so many times that I'm actually okay with doing it now. It only takes about 10 minutes from when they insert the scope, take biopsies and then remove the scope... so its not too bad.

Two years ago, I was doing anything to avoid the hospital and to avoid having any type of scope being done. I told myself that once I was done with all of this, I would never do this again until completely necessary. Well look at me now, choosing to be a participant in this study!

My hopes are that I will be able to help the research to improve the lives of patients with IBD. I know first hand what it is like to suffer from such a life changing disease and I want to be able for them to come up with cures and answers. For me, it's being uncomfortable and getting scoped for 10 minutes, but eventually it could possibly help change the future and change the future of others who are still dealing with the terrible symptoms that come along with having inflammatory bowel disease.

-- JKL

HAPPY ONE YEAR!!!

This is it.

TODAY MARKS 1 WHOLE YEAR

WITHOUT MY COLON!

Words can't even describe how I feel after my past year of hell, my past year of many lessons learned, my past year of struggles, and my past year of becoming who I will be for the rest of my life. One year ago, I was laying in the hospital at 20 years old, incredibly sick debating whether I could really go through with getting my entire large intestine removed at such a young age. I was scared, sad, depressed, and most of all embarrassed. What 20 year old college student would want to go through such a life changing experience and be living with an ostomy on her stomach for months and months?? I was scared about the way people would look at me and I was scared about how I would look at myself. 

Last summer I was admitted into the hospital on July 9th. My doctor told me I had to go in and I would probably be there for days to weeks since I couldn't get off any steroids. I was in the hospital for a few weeks on IV steroids and medicine until my GI doctor told me I had to make some decisions. As many of you read last year, I was given the choice to try a very intense therapy using a drug called Cyclosporine (with the chance of it not even working) or I could decide to go with getting my entire colon removed. The doctor told me that he would return the next day and I would then tell him what I wanted to do. That night, my parents left me alone so I could gather my thoughts and make a decision without any persuasion. I was frantically trying to look for information on the internet about the surgery and was just sitting there, crying. I will never forget this moment because I wasn't crying because I was sad. I was crying due to fear of not knowing. Not knowing if I was going to be making the right decision. Many nurses came in that night to try to talk to me and see what was going through my head. I truly did not know what I wanted. The only thing I knew was that I was so sick and tired of being sick and tired. That night I was trying to eat a sandwich since I hadn't eaten much that day and at this point I still could barely even eat anything without feeling extreme pain and running to the bathroom. These days were very very painful for me. It had gotten to the point where I was in so much pain that I would almost faint or I would almost throw up multiple times a day. The next day came and I hesitantly told the doctor I wanted to try the drugs. I was doing anything to not have to get my stomach cut into. 

Well, let me tell you... This ended very fast for me. After waiting for the medicine to kick in for about a miserable 2 days... I said "FUCK IT" and decided I needed to get the surgery. At 20 years old, I was not living. I was spending way too many days in the hospital, way too many days upset and in pain and crying. I called my parents, very emotional, and told them I was changing my mind. After trying for two years to find my "miracle drug", it was finally time to give up, wave my white flag, and go with my last option -- surgery.

The day before the scheduled surgery was a very emotional day for me. I was told to shower because I wouldn't be able to the day of. I remember staring at my stomach in the mirror, sobbing, because I didn't want to ever have to see myself with an ileostomy. I thought it was gross and I kept telling myself I would never, never show anybody this "thing" that would be on my body.  Without my incredible nurse while in the hospital, I honestly don't know where I would be. For only meeting someone and talking to her for such a short time, she changed my life. She gave me the courage to do what was best for my body, to get the surgery and ultimately end up with my JPouch. I remember crying to her, and she told me "Jacqueline, you will get your life back, I promise." Words cannot express or thank you enough, Kristin, because I have became a much more understanding, compassionate person - not only involving inflammatory bowel disease but with my future career too. I hope that one day I can change someone's life for the better as you did for me. For the past year I have always thought back to this day and reflected how much has changed for me. I'm one who always has believed that everything happens for a reason, and I know this horrible, embarrassing, life threatening disease was given to me for a reason.

Waking up from my surgery, I was in too much pain to even realize what was going on. The first thing I did, was reach down and feel my stomach and my bag. I cried and cried even more.

A few days later, I was doing okay but still very sad about my ostomy. I didn't like looking at it or changing it or letting other people look at it. I then realized that I could either sit there everyday for the next couple months and throw myself a pity party, or I could embrace my insecurity. I could raise awareness and show people that you can still live a normal life with an ileostomy. I knew it would come with many challenges, but I wanted to do this for myself and for others in the IBD community who are still scared to show their ostomy/scars or share their story.

 I am proud to say, one year - 365 days later - that I AM DISEASE AND OSTOMY FREE. It came with a huge cost, but I did it and even though I no longer "have my disease", I will forever dedicate my life to helping those people who struggle with the same problems I had in the past. I've gone through THREE, intense surgeries where my stomach has been cut open, my insides have been removed and rearranged within a span of 8 months. I am blessed to be left with a few beautiful scars that I will always love on my stomach from my incisions and my ileostomy.... 

The little bag, that SAVED MY LIFE. 

-- JKL

Its Summer!

So, I just realized that I actually haven't blogged in kind of a while, which I guess you could say is a good thing because not much has happened that is drastic. I finished my first semester of nursing school last week!! yay!! And now this week I started my three week Statistics class that is Monday - Friday from 9am until 12pm. It's kind of a pain in the ass (no pun intended), but it's one of my last pre-reqs I need to finish so I thought it would be best to just knock it out in three weeks.

I also found out that I got accepted to be a volunteer camp counselor at Camp Oasis this summer! This is a camp that CCFA (Crohn's and Colitis Foundation of America) has created for children who have Inflammatory Bowel Disease and want to be a normal kid in a safe and supportive environment.  I applied a while ago and have been eager to hear whether I got the position or not. More than 60 people applied for the positions and I was chosen to be one of the 28 counselors! It is going to be an amazing experience working with children with Crohn's diesase and Ulcerative colitis. They have 24 hour nursing and mental health specialists for the kids too. We will be doing the usual camp activities like swimming, land and water sports, high ropes course and visual and performing arts. I'm also happy about this opportunity because I have never been a camp counselor before! Ever since my first surgery (which was almost 10 months ago now), I told myself I would do whatever I can to help others who suffer from such a terrible life changing disease and I think that this is a step in the right direction for me.

Here's an awesome little video about Camp Oasis!

Now a little update on my J-Pouch life.... 
My wound finally closed up about 3 weeks ago!!! I just have a little purple scar on my abdomen that I am so happy to show to people and I love so much! I also started working out a lot more and even though I started back from the way beginning (due to having surgeries, it completely made me lose muscle and stamina on working out) I am feeling so great with what I am doing and I have had no problems with pain in my abdomen or anything. I still have had NO problems with eating anything or drinking anything in particular. I also still probably go about 6 times a day... give or take, which is NORMAL for someone with a jpouch! I also am still NOT TAKING ANY MEDICATIONS anymore which has been my number one goal from the beginning of my diagnosis. Life has been so so so great with my jpouch so far.

I cant wait to finally have a summer where I am healthy and worry free about my disease. The past two summers have been extremely hard and full of pain and sadness for me, and I cant wait to make great memories living in Chicago for the first time in the summer and spending my 4th and final summer working at Independence Grove Forest Preserve.

Cheers to health and happiness!

-- JKL

Jpouch Update

So its been a little over three weeks since my ileostomy takedown and things have been going so well. I am so happy with the outcome of my jpouch! I thought my body would take a while to be used to my jpouch, but things have actually been oddly normal ever since I've been out of the hospital. I was told that I would still be having a little bit of urgency, going many times during the day, and some people even say they become slightly incontinent (like maybe at night). I have to say, I really haven't had any problems with any of that which makes me so happy. I go to the bathroom more than a normal person, but it hasn't been a problem with me at all. I even started to drink coffee and diet coke again this past week and everything has still been very normal. I have also gone out to the bar a few times and I just take immodium before going out. I finally feel like a "normal" person again! I haven't felt this feeling in over two years. It is such a relief to not have to constantly be worrying about my ostomy anymore.

About a week after my surgery, I decided that I wanted to begin working out again. I went to the gym twice that week and realized I should probably wait a little bit longer because my stomach was hurting me a lot. The pain kept getting worse and worse and by that Friday of that week, I ended up going to the Emergency Room. I thought that my wound from where my ostomy used to be was infected because it was hurting so badly, it had a slight layer of pus over it, and around the top of the wound, it was very hard. After being at the ER for about 5 hours, it was confirmed that it wasn't infected. I had some of my doctors come down to look at my wound, and they had to scrape a layer of dead tissue out of it, causing major bleeding and pain in my wound. After leaving the ER, my wound looked so much worse than what it looked like going in. My wound was about an inch deep into my abdomen and they told me I would need to do a wet to dry dressing change on it until it closes up. Ever since then, I have had no problems with it and its starting to look like its healing better now. It is still an open wound so I do a dressing change on it every day.

Tomorrow I am heading back to the University of Chicago for my post-op appointment. Im sure nothing too exciting will happen there. I think they are just going to be looking at my wound and making sure everything has been going well with me. Also this week I am going to be observing in the GI lab during my clinicals! I am going to be watching different procedures including colonoscopies and endoscopies which I am extremely excited about! Yay GI!

 Heres my wound after they scraped away the dead tissue! Gross, I know. 

 And here is my tummy with no ostomy! yay

Life is good ~
-- JKL

Bye bye ostomy!

Sooo I realized I never actually posted this after my surgery.... sooo read up!


Written on March 9th, 2015:
"It has been three days since my third and final surgery... my "ileostomy takedown." After the surgery, I woke up in the post-op room and I was in pain, yes, but not nearly as much pain as I have been during the past two surgeries. I was given pain medication right away and after that I seemed to be able to tolerate it. When they rolled me up to my room, I even was able to move myself from one bed to another rather than making the workers lift me up. I was on a lot of medication so i don't exactly remember the details of the day but I know I was sleeping on and off a lot and not moving much. I also remember I kept feeling down on my abdomen for my ostomy, just because I've gotten into the habit of always checking up on it.

Here's my new stomach! The bottom incision is from surgery #2 and 

where the dressing is now is where my stoma used to be!

 Jerry got a picture of me knocked out.. (my hair looks so dark!)

After this surgery, I didn't have a catheter in like I have the past two times, which means I would have to get up myself and go pee when I had to. Like I said, I could actually get myself up without much help the first few times go try to go. However, for some reason, I felt like I had to pee so badly, but I WASNT GOING. My nurses and I tried every trick in the book (turn on running water, put your hand in a cup of water, poor water over yourself)... and eventually after doing a few bladder scans and ALMOST having to get a straight catheter, I went! 

The same day I had my surgery!

The pain from this surgery is a bit different than the last. It only hurts on my right side, where my stoma used to be, and its more of a sore feeling rather than a sharp stabbing pain. The day after, the doctors came in to change the dressing on my wound, and it actually looks like a gun shot wound in my stomach. Its a perfect circular shape on my lower right abdomen. During the surgery, they used stitches on the inside of it that will dissolve them self in order to close it up. I was so happy when I first saw my stomach without my ostomy... even though it helped save my life, I'm glad that I can move on from that part of my life and start to feel "back to normal"

All day Saturday, I wasn't able to eat or drink anything, so I was miserable to say the least. Yesterday, I was restricted to only being on my "clear liquid diet" again and after eating three bowls of jell-o, I decided I would rather starve than try to eat any more of that! I think I had eaten my body weight in jello and that point and felt nauseous just thinking about it. Finally,  I was given the okay to eat this morning! So I ordered something that was pretty light on my stomach.. I had an english muffin and then a side of vanilla greek yogurt. It all went down really well and I feel great as of right now. I just ordered lunch.. Mac and Cheese and mashed potatoes!

I will hopefully be able to go home tomorrow!"




-- JKL

the finale

It is March 5 around 9:30 pm. Tomorrow I will be getting up around 4:30 am in order to be to the University of Chicago hospital by 6 am and my surgery is scheduled for 7:30 am. Today I have been on a clear liquid diet, so I've eaten/drank... jello, Gatorade, sprite, Italian ice, and a little bit of broth... haha YUM.... It wasn't as bad as I thought doing this diet, its just so hard to remember NOT to eat something if its sitting there. By 12am tonight I will be NPO (nothing by mouth) until after my surgery.

The past few days have been pretty good and a little emotional. On Tuesday, my clinical group surprised me with a "poop" cookie cake, a very nice card, and a gift card. I had NO IDEA that they were doing this for me and I thought it was so incredibly nice that I cried. I was so happy by the support I have from so many different people in my life.

Here's my cake!

On Wednesday, I attended my first University of Chicago IBD educational. It was in Orland Park, IL and my mom and step dad came with me. Even though I do know a lot of the information involving IBD, I still want to try to gain as much knowledge as I can about it in hopes of it one day being a part of my profession. Dr. Rubin and Dr. Cohen were the speakers of the lectured that was titled "Why haven't we cured Inflammatory Bowel Disease yet?" It was very informative and I got to go talk with Dr. David Rubin, one of the nations top IBD doctors (and also MY doctor at U of C) and thank him for everything the team and he has done for me. 

  

Dr. Rubin speaking at the IBD event

Dr. Rubin and I

...and after going to the educational, my mom realized that there was a P. F. Changs near by so of course we had to stop and eat on our way home and I got to have my last supper before my liquid diet.

Double pan fried noodles with beef... my favorite.

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Well as of now I am feeling great going into my surgery. I am very anxious and just wanted to get this over with. The day I've been to patiently waiting for since July is finally here. I wouldn't say I am nervous abut the surgery... I am more nervous about it not working for me and feeling those same horrible feelings I did when I had my UC. I am staying very hopeful and I know that everything happens for a reason. I am so thankful for everyone who has been extremely supportive by sending me texts and messages wishing me good luck. I am feeling an insane amount of happiness and a sense of joy that I have never really felt before...

TOMORROW I WILL BE OSTOMY FREE ~

I will update, like always, when ever I am feeling better!

CHEERS

-- JKL

Details before FINAL surgery!

So yesterday I attended my THIRD and FINAL pre-op appointment at the University of Chicago Hospital. I knew going into it that I had two appointments to attend. For one of the appointments, I THOUGHT I was just getting a simple x-ray on my abdomen... HA! Was I in for a shock. What I got was called a Defecography test. It was actually such an awkward and horrible procedure to be in. And I HAD NO WARNING ABOUT IT UNTIL I WAS THERE! Haha... I could go into detail about it but instead I'm just gonna leave it up to you guys to look up the information instead! 

Just know fellow JPouchers.... YOU WILL HAVE TO DO IT AND ITS NOT FUN!

Besides that unexpected experience, everything else went great! I met with my doctors and my wonderful surgeon who explained what would be happening for the procedure. On Thursday March 5, I will have to start my clear liquid diet all day and then I cannot consume anything past midnight that night. Friday, March 6 I have to be in the hospital by 6:00 am for the 7:30 am surgery. Dr. Hurst (the surgeon) said that this surgery usually only takes a maximum of one hour. That is a HUGE difference compared to my last surgery, which took about 6 hours. The suspected hospital stay is usually around 3-5 days depending on how well you do. What will determine me being able to leave is the consistency of my BM's and being able to have control and feel comfortable with everything. They don't want to let patients leave when having loose stool, due to potential dehydration problems. So my #1 goal after my surgery is to eat anything that will "thicken" my wonderful BM's. They also told me once again that I wont be able to lift more than 10 pounds for another 6 weeks and that I will be put onto the lovely "low residue diet."

YOU GUYS DON'T UNDERSTAND HOW ANXIOUS I AM!
Yaa know, its been a good run with my ostomy and my doctors, but i think its time to say goodbye to this chapter of my life and finally (hopefully) be able to move on!

Here is a cute little diagram of what my insides look like! 

 

Basically, during this last surgery, the only thing they need to do it take the part of my intestine that is forming my stoma (the opening where my ostomy is connected to) and sew it together to the stool will pass through my entire small intestine instead of taking "a turn" into the ostomy. They said that I will have a few staples in my stomach were my stoma used to be and eventually I'll have a nice circle scar on my stomach. The official name of this surgery is "ileostomy takedown."

Following my surgery, I have over a week to recover because that is when my Spring Break is for school. It will be SO NICE not doing anything for a few days, considering I'm constantly doing homework and studying for my nursing classes!

LET THE ONE WEEK COUNTDOWN BEGIN <3 



-- JKL

Forever on my arm

Two weeks ago I got this tattoo that will forever be on my arm reminding me of all the good and bad I've been through. 

My pre-op appointment is next week! I will have a big update then ❤️❤️

--JKL

Late night thoughts

I've been having a very busy last few weeks. My days are pretty long with classes, doing homework and trying to find time to work out. Also I have a ton of tests coming up within the next few weeks. I have to get up early tomorrow but I am sitting here thinking about all the things I've been through the past two years. Just about less than a month ago, exactly two years ago was the first time I started getting my horrible UC symptoms. Little did I know, it was going to change my life forever. Today I was actually very happy and felt a sense of pride that I only have gotten a few times while having this disease. A lady in one of my nursing classes went out of her way to come up to me and say "I'm so thankful to know you. You are so inspiring and strong." Not only was it a bit random for the day, but I had never really had anyone approach me like that before. And I actually was so happy about it. I've said since day 1 after my surgery that I was going to do what I could to share my experiences and help others who go through what I do. The other week I was blessed to have to chance to go in front of my lecture in one of my nursing classes and talk about IBD, my surgeries and how I live my life with it. I also taught a few of my peers in the lab how to change Ostomy appliances and how to take care of it. Even the teachers were asking me questions because some of them weren't totally familiar with everything the disease involves. I'm so happy that I decided to go into this journey with an open mind and willing to do something like share such personal, emotional stories and experiences I've had. Sometimes i catch myself smiling during the middle of a bad day because I think that even though I'm in a pretty unfortunate situation, it's so bittersweet and honestly, I don't think I would change what I've been through or my situation if I was given the option. 

February is coming soon and I'm very anxious for it because my pre-surgery appointment is at the end of the month! 

Here's my healed tummy 1 month out of surgery number 2! Feeling great and back to normal again. You can't even see my larger incision scar because it is a lot lower than where my pants sit! Yay! 

-- JKL

2015

Its almost been 4 weeks since my surgery! Things are pretty much back to normal for me. I officially stopped taking my meds about 2 weeks ago (right after New Years) and I don't have any pain anymore. My scar is healing just great, except for the fact that its still swollen and numb around the incision area. All my other scars were all just too small to really hurt.

2015 has been… interesting so far to say the least.

Well, waking up New Years day, I had double pink eye for a few days on top of still having lingering pain from my surgery. I started school back up on January 12th, and jumped right into my Nursing classes. We already learned all the basics in lab including vital sign information, how to perform a complete bed bath for a patient who is in a coma, and how to change the linens of an occupied bed. Next week in one of my classes, on topic we are covering is bowel elimination and GUESS IS WHO GUEST SPEAKING?!?! -- Yes, I volunteered to show everyone my ostomy, share my story, and answer any questions anyone has. I might as well show and help my fellow nursing students learn about something that they might eventually encounter. 

Me in my North Park scrubs!

Unfortunately, my skin has been severely irritated since my surgery. I have had a bad skin irritation under my skin adhesive that hurts at times. I've been using the stoma powder to ease the irritation and I also was prescribed a medicated powder. I went last week for my post-op appointment at the U of Chicago Hospital again. The nurses and doctors kept telling me how much they were impressed with how my healing has been going and they were all very excited for me to begin nursing. 

I also today just applied to be a camp counselor for the Camp Oasis for children with Crohn's and Colitis that will be in August located in Wisconsin. I hope I eventually get a call back for an interview so I can be around other people who relate to me and so I can help the children who suffer from the same struggles as I do. 

My view from the nursing floor at NPU

First weekend back at school

AND THE COUNTDOWN BEINGS….

LESS THAN 2 MONTHS UNTIL IM OSTOMY FREE AND JPOUCH LIVIN…!

March 6th here I come.

-- JKL