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