Depression & IBD

  

Written November 6th, 2016:

I am on my way home from a Ulcerative Colitis Patient Advisory Board meeting that was held in Atlanta and hosted by Pfizer Pharmaceuticals. Pfizer's mission is to help bridge the gap between patients and doctors and pharmaceutical companies. They want to help provide patients with necessary resources that can help to better their quality of care. This is the second event that I have been a part of within the past couple months. On this Advisory board, there were 15 patients present, all living with ulcerative colitis. More than half of the patient population that was present are all living like me – without a colon. We all live with a “JPouch” instead. This is a surgically created pouch created using your small intestine, so it is an internal pouch. Everyone with a JPouch in this group (and majority of patients who have one) have lived with an ostomy bag at some point in their life. It was crazy coming to a conference and instantly connecting with all of these people from around the country (and Canada) because of the one thing we have in common – inflammatory bowel disease (IBD).

I am sure many of the people who have read my past posts or even know just a little bit of information about inflammatory bowel disease know that this disease sucks. Yes, it is an autoimmune disorder where my body fights my bowel, however it also harms other parts of the body, causes fatigue, and can cause depression/anxiety.

Depression is something that many patients with chronic diseases face. Looking back at my experience, I realize that my mental health status was something that was never asked about during the absolute worst time of my life. At this point, I was having more than 40+ bloody, watery bowel movements a day and it got to the point where I couldn’t even control my own bowels. Even when a bathroom was a few steps away from me, I would end up having an accident. At 19 years old I had completely lost control of my bowel movements... I had to transfer schools, drop out of classes, had multiple hospital stays that were a month or longer at a time. It was depressing and caused a great deal of anxiety – however, I was NEVER asked about my mental state.

After being at this conference, we all had the chance to be open and explain our experiences. One thing that made me feel at ease was that other people were able to admit how they suffered or still suffer from depression caused by our disease. This past January, I was in a really bad mental state – always depressed and upset. Even though it had been months since my last surgery, I was still so depressed. I felt nothing but guilt because I had been doing great living with my JPouch and this was the best I had felt since I was diagnosed with ulcerative colitis in 2013. So why was I STILL depressed?

I finally got the courage to seek professional help and made an appointment to see my doctor. When I was in the office, I broke down in tears explaining my depression and knowing this was not okay for me to be down all of the time. I explained how I have been doing very well physically, but emotionally I was a wreck. I was eventually prescribed an anti-depressant, which was a major help.

I have been through so much with my colitis. But everyday I am still learning from others and from myself. This weekend I learned that I should not be embarrassed for getting help for my depression. Who wouldn’t be depressed after going through what I went through? Depression and IBD is a huge topic that needs to be addressed more and I hope as a future nurse, I can be that person to make sure this issue is addressed.  I have said this many times and will once again... My IBD has taken so many things away from me. We didn’t choose to suffer from this disease, but you learn to live with it and embrace it to the fullest. Yes, my IBD has taken so much from me, but it has given me so many things that I would never have without it. I have met some amazing people who I would never have met and these people have changed my life. My IBD has given me a different perspective on life. It has given me experiences that have made me appreciate the little things and have showed me what is actually important in life. My IBD has given me passion of helping others who are suffering from this disease and I hope I can continue to fulfill that with my nursing career. 

Depression is not something to be embarrassed about. It is OKAY to ask for help when you are feeling this way whether it is going to a therapist, doctor, or even just talking with a family member or friend about how you are feeling. Physical health with this disease can be pretty bad at times... your mental health doesn't need to be as well. Don't be afraid to speak up like I was! 

-- JKL

My JPouch is 1!

Happy Birthday to my JPouch!!!!!!!

365 days ago I was going into my last surgery and spent my spring break in the hospital. I went into the surgery with my ileostomy and came out with a new stomach because I was ileostomy free! It was such an emotional day and experience knowing that I was finally seeing the light at the end of my incredibly long IBD journey. Living with an ileostomy was hard but I learned how to accommodate and changed my lifestyle to make it work. I am beyond blessed to have had the option to get my ileostomy reversed where I would then continue living with an "internal pouch" called my JPouch. Everyone says that the first year with your JPouch is the hardest because your body has to relearn how to function since my colon and rectum were removed and my small intestine was sewed up into a "J" shape. My body thankfully adjusted to my JPouch very fast and I was never on any diet restrictions. My Pouchitis (inflammation of my internal pouch) that I experienced a few months ago was my only set back in this entire year. I have been eagerly waiting for my one year mark to arrive because it lifts a weight off of my shoulders knowing that I have hopefully made it through the worst. I know celebrating a day for your intestine sounds somewhat crazy but I cannot help but to enjoy this wonderful day with a smile on my face and celebrate.

Last year, I remember going into my last surgery feeling different than the past two surgeries. During surgery 1 and surgery 2, I was dreading getting my surgery. I was very sick and not looking forward to the recovery process or once again, waking up to having an ileostomy. But this last surgery, I was so excited to get. I woke up that morning so happy to be able to finally be DONE with my surgeries and to finally kiss my ileostomy goodbye. Even though I loved my ostomy (more like a love/hate relationship) I was ready to break up with it and move on with my life. It treated me well for the time being and I am so thankful I was given the opportunity to experience what I did, but I was ready. I had an overwhelming sense of joy that morning,  a feeling that I don't know if I will ever experience again. I had never been more thankful for my health, my family, my health care team, my friends and most importantly my IBD. Everything has made me who I am today and that morning, it all just hit me and brought tears of overwhelming joy to my face.

My JPouch is the best thing that has ever happened to me. Many people say that "everything happens for a reason." Even though some may believe that is true, I actually do not. I think bad things happen and good things happen and there is no reason as to why. However, I do think you can find reason within everything. I have found my reason as to why I was given inflammatory bowel disease and it feels so nice to say, I am at peace with it. I accept it. And I would never take it back if I could. My JPouch has made me a better person. It has shown me perspective. It has given me my life back. It has taught me how to be patient. It has made me a more compassionate person. Even though it isn't completely perfect, I find it one of the most beautifully flawed things that makes me who I am.

 

So thank you JPouch.
Happy 1st Birthday and many more to come.

-- JKL

Pouchitis Problems!

I'm 11 months in from my last surgery which was March 2015. Everything has been so great and I  have had minimal to no problems whatsoever... until a few weeks ago.

About three weeks ago I noticed I have been feeling slightly off. My fatigue was a major problem once again and having stomach/intestinal pain off and on. One night, I was up basically all night just so uncomfortable with either being in pain or using the bathroom (probably got up at least 6 times). The next day, I was facing major nausea and fatigue as well. I even had to leave class early due to feeling like I was going to throw up in class.

I talked with my doctor and we both figured that I might have Pouchitis.


I know I have talked about Pouchitis in many of my posts before because I knew it could potentially be an issue after getting my last J-Pouch surgery.

Pouchitis is .... "the inflammation of the lining of a pouch that is surgically created in the treatment of ulcerative colitis or 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."

Thankfully, I was very aware that this complication was possible and I knew the symptoms to look out for since the way beginning of my surgeries.

 Once again, here is a picture of what MY instestines look like since my surgeries. The part that is connected to the "anus" is called the "J-Pouch" due to the way it is sewed together. That is the part that was re-inflamed.

 I got a hold of my doctor and she thankfully prescribed me antibiotics to help to treat this problem. I was prescribed ciprofloxacin (Cipro) to take twice a day for 14 days. After taking two doses of this antibiotic, I felt completely back to normal.

Things are once again, back to normal and I am doing great. This episode that I had was a great reminder to me though. Even though I got my surgeries to get rid of my colitis, I will always have symptoms with IBD and sometimes I forget about that. Having IBD complications, in one way or another, is something I will have to face throughout my entire life. I was thankful that I was educated enough about my symptoms in order to catch my problem in time.

Other than that, I am so happy to announce that I am currently waiting to hear back from a Nursing Intern position at Swedish Covenant Hospital for this summer. I am so hopeful that I will get this position. I am also so happy that I am eligible to apply for a scholarship from Abbvie for college students who have Crohn's or colitis. The application is due March 25th and they pick 15 winners to receieve $15,000 for the next school year. Fingers crossed.

Until next time.
xoxo

--JKL

Hey 2016!

As im sitting here trying to find the words to write, I cannot help but to cry. I just reread my post last year that I posted around the new year I have to say... I don't think I can top that one. Im crying ah!! Im so so thankful for everyone who has come into my life in 2015. The good and the bad.  From every single person, I have continued to learn and grow. I cannot begin to thank all of my amazing friends and family members who have always been there for me since day one. I have to say, 2015 was definitely a crazy crazy year for me. There were so many ups and downs and even though at times I felt so unfortunate to have to experience them, I'm fortunate I did. For the majority of the year I didn't have any complications with my disease which was the goal, Right?!?  I attended a camp for kids with Crohns and colitis that absolutely changed my life forever. I met amazing co counselors, staff, and campers that have left so many unforgettable memories and influences in my life. I continue to fight this battle of IBD for them because they all deserve a cure and an answer. I have to say, in all of 2015, I felt the absolute happiest and most joy there, surrounded by people who completely understand me and can relate to my situations. It's truly an amazing feeling to have someone who just gets it. I will always help and dedicate my life to IBD. It's my calling. It's who I am. It's my life!

In school, I have one more year left! One more year until I will graduate with a bachelors degree and be able to take the NCLEX to become a certified nurse. How crazy is that?! One year. That's it. I love North Park University for preparing me for my future career and something that I value so much. This past semester I spent my time at Lutheran General Hospital and Evanston Hospital fulfilling my clinical rotation requirements in Pediatrics and OB/GYN. Both of these hospitals have helped me grow as a person and in my future nursing career. Even though I still cannot say which type of nursing I want to go into yet, I will say... I LOVED OB AT EVANSTON!!! It has been my favorite so far and I cannot wait to see what my future holds.

IBD though...
So it's actually weirdly been pretty good. I've heard terrible horror stories about the first year with having a JPouch, but I have to say I don't think I've really had any problems... It depends on what I eat throughout the day but usually I use the bathroom between 4-7 times a day. That's my normal, which I am okay with. When it becomes on the higher side I do get a little salty and I'm like "okay seriously do you really have to go AGAIN?! ". But I love my Jpouch. I love my scar I love my surgeries I had and I love everyone who helped me get to where I am. I'm working on gaining my abdominal muscles again because I compleyely lost them with my disease. At times, I randomly will get an extremely painful stinging pain in my area of my scar for a few seconds but then it goes away. That's normal as well too.  Sometimes when I drink I'll take Imodium (antidiarrheal) to slow down my motility but I usually forget to (hah!)

I have a few goals for the upcoming year and I hope when I look back in one year from now I will have accomplished them. First off, in exactly one year from now I picture myself getting my diploma and graduating from NPU! Another big thing I want to do is to compete in races. My ultimate goal is to be able to run a half marathon because its something I never thought I could do. I really wanted to to do Team Challenge (IBD race) in New Orleans in Feb but I have realized it is not realistic for me at this time. Next year though I PROMISE I will be running one of the Team Challenge half marathons. I will also remember to do things for myself. It's important to do things that make yourself happy. In June, I will be moving apartments to a new location in Chicago and I hope that is somewhere I will live for a few years while I'm working downtown at a hospital. I think it's important for me to reach out and find things that truly make me happy and to eliminate the toxic substances in my life. My mother is my role model. She is always so positive and upbeat and I know I am like her. My depression and anxiety gets to me at times and causes me to change. I am striving to change to be my mom. To be a positive and genuinely happy person. To be someone who lives and loves to the fullest.

2015, you've been a blessing and a curse. I've hated you but have had times I am so thankful for you. I have grown more and more. My amazing JPouch was used for the first time on March 6, 2015... Sooo lookout baby you know I'm gonna have a party for you! I have lost and found myself this year. I didn't think it was possible, but I know it has been such an amazing way to show me who is extremely important to me. My friends. My family. My fellow IBDers, my nursing students. My patients. All of you have made such an incredible impact in my life. And I thank you. I am who I am because of you guys. With tears running down my face, I thank you all.



Once again, CHEERS TO HEALTH AND HAPPINESS.
-- JKL

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