Living With Ulcerative Colitis

A 24 year old living with Ulcerative Colitis. I'm hoping to educate and support others living with Crohn's & UC.

[onlytwitterpics]

[catoverlord]

[iamonlykidding-deactivated20210]

[creatinganewnormal]

Nothing can be easy

I've been gone fore a while. I have felt so wonderful and normal since I have been in remission for two years. But last month, I starting having an allergic reaction that causes red, itchy welts to cover my entire body. My primary care doctor suspects it is my medication for my UC. I am more than frustrated. I thought I had this how disability thing down. I felt so lucky, I was in remission, and doing so well, and I could honesty forget about my UC on my best days. Now, I'm extremely embarrassed about the potato face that has popped up, and the massive rashes all over my body. It was too good to be true. If it is my medication, I will need to start a new medication regime, that will more than likely be a (even more) expensive injection medication. I have two doctors appointments already this week, and more than likely, I will have a few more as this itchy adventure continues. Here's hoping my life doesn't get too hectic in the next few weeks.

[iamnolongerhere-l-deactivated20]

not to vague but i hope all my mutuals are doing well

[invisiblyafflicted]

I shouldn’t feel guilty for needing pain relief

[chronicallycandid]

THIS!

I am NOT too young. 

I am NOT faking it.

and I am definitely NOT a drug addict. 

Pain doesn’t care how old you are! 

[creatinganewnormal]

It is hereditary

My partner and I had a discussion recently about the possibility of children in our future. 

Now, I know what you’re thinking. Why are two 22-year-olds, fresh out of college, talking about having children? The answer is: Because I don’t want to have children (biologically, at least). I want to make it clear to my partner that I can’t consciously pass down my DNA to a child, if it means they will have to go through everything I went through with my Ulcerative Colitis. And even if my child doesn’t have it, how do I know that he or she won’t pass down the genes for an IDB to their children? Or their children’s children? 

I can’t even think about having a child go through the colonoscopies, the hospital stays, the thousands of pills a year. How could I do that to another human being? How I could knowingly give a child the possibility for a lifetime of constant pain? 

Some people may say that if I knew it was a possibility for my child, wouldn’t I observe his/her health, and make sure it wasn’t as bad as when i flared? The simple answer is, it can flare for many reasons, and a lot for those reasons can’t be controlled by the patient. 

The last time I was hospitalized, it was because my colitis had gotten worse, and my doctor had no explanation, after running dozens of tests, other than my mild ulcerative colitis had decided to become a severe case of ulcerative colitis. I hadn’t changed my diet, I wasn’t much more stressed than usual, I was taking all of the same doses of medications, and I was even on a very high dosage of immune system suppressants. 

There’s this part of me that feels guilty and sad at my decision to not have any biological children, but at the same time, I will continue to feel this way, until there is a cure for IBD’s. 

Now, I know that not all IBD patients feel this way, but I can’t think of a single enjoyable part of this wicked illness. I can’t think of a single reason why I would risk passing this on to a child. I know it sounds selfish, and in some ways, it is. I don’t want to have to go through that distress and emotional turmoil that my parents have to go through. I don’t want to wake up at 3 am and take my child to a hospital. I don’t want to drive six hours to another state to see my child in a hospital, for 5 nights. 

I’m a completely different person because of my colitis, and even though I am a stronger person because of my illness, I won’t consciously allow myself to set up another person’s life to be full of pain. 

[creatinganewnormal]

A Few Inches

I'm coming upon a year and a half of being diagnose with Ulcerative Colitis. In the past 18 months, I've had two colonoscopies, two hospitalizations, trial and error tests of 15 different medications, countless orange bottles, and hundreds of pills in my system. I wouldn't ever wish this on my worst enemy. It seems unreal. I used to be extremely healthy. As a child, I was rarely sick, and I was rarely prescribed medications. 

When I was first hospitalized, I was devastated. This was a turning point in my life. A night that changed my life. I’ve finally found medications that work, a doctor that takes great care of me, and a support system that really tries to understand my Colitis. 

 Last month, I cut several inches of my hair off, because my medications were making my hair thin. I was extremely self conscious about my thin hair, as well as the fact that it gets thinner everyday. On the different support group sites for Crohn’s and Colitis, I have seen several posts about people losing their hair, and even have shaved their hair off since it was thinning so terribly. I’ve always dyed, cut, and styled my hair in several different ways. My hair is a fun way to express myself. Once my hair started thinning noticeably, I decided it was time to cut it off. Many people told me “I can’t tell it’s thinning”, or “It looks fine.” And I know that others wont necessarily notice, but I did. I noticed as soon as it started to thin. This asymmetrical bob I have now makes it look much fuller, and I feel so much more confident with my hair now that it’s cut.

 I'd be lying if I said my Colitis doesn't run my life. It definitely does. I hate that I have lost so much control over my own life. I can’t eat what I want to eat, drink what I want to drink, do what I want to do. I can’t change that. It sucks. I hate it, but I won’t let it take over. I am still alive, I am still me. 

[creatinganewnormal]

For my friends who feel like people only see the sickness, the disability. 

You are a ball of sunshine and bravery. I'm sorry sucky people don't see who you really are right away. 

[creatinganewnormal]

Everything is new and scary

Today I had my 6-week check in with my doctor. My GI doctor is one town over, and my commute is anywhere between half an hour to forty-five minutes. My GI doctor is wonderful, she is so friendly, and always makes sure that I feel good, and that she can do everything she can. I accept the commute because I feel as though she is one of the best doctors I’ve ever had.

My doctor likes to make sure that I am aware of all of the possibilities that can occur due to my diagnosis and medications. This is one of the best things she does for me. She makes sure that I am educated to the highest extent. 

Today, she told me my white blood cell (WBC) is still at 2.7. Which, if you don’t know, is dangerously low, especially for a 21-year-old. It was the same WBC that I have had for the past several months. I’ve been educated on the possible surgeries that may be in my future, the possibility of an ostomy bag in my future. 

While describing the maintenance of my ulcerative colitis and the two strong medications I have to continue to take for maintenance, she told me my case of ulcerative colitis is pretty severe. It surprised me. I always thought that my case was considerably mild since I did not need surgery. 

On my 35 minute drive home, I just kept thinking about the things she said to me. I realized how scared I am. I’m scared that my autoimmune disorder will prevent me from academic opportunities, job opportunities, social opportunities. 

 I’m scared of getting a virus or infection while my white cell count is so low. I’m scared of the inability my body has to fight off potentially dangerous illnesses, and I’m scared that my new dose of immunalsuppressants will cause a flare up. I’m scared that one day I will have to get my colon out, or that I may need a stoma procedure that will result in an ostomy bag. I am scared that colon cancer will be in my future, since IBD patients are more likely to be susceptible to colon cancer. I’m scared that my life will continue to be stressful. I’m scared that I will die. 

I know that everyone dies, I do not think I am the first immortal being to ever grace the planet. To be more specific, I am scared that I will die from complications of my ulcerative colitis younger than I anticipate to depart from this life. I am scared that I will leave loved ones behind sooner than they want me too. I’m scared that I will not be as strong as I want to be. 

I have mentioned before that I want my colitis to be my fault. If it’s my fault, that means I can do something to change my situation. I want my colitis to be my fault, because then that means I can know exactly what cause my flares, and what caused it in the first place.

I am scared. I have been scared for the last 18 months. I know that being scared will not help me, nor will it help my journey to create a normal life for myself.

 I don’t want to be scared. But I will always be scared, because anything can happen, and anything will happen. 

[creatinganewnormal]

Don't feel sorry for me

Over the past year, I've been working on creating a new normal for my life. Unfortunately, I have changed a lot of my daily routine. One of the most important, and drastic changes I had to make was my diet. When I tell people what I can't eat, or I have to decline eating something due to my dietary restrictions, they usually say "Oh, I'm sorry." Please, don't feel sorry for me. I understand that people want me to know that they are concerned for me, and they are empathetic towards my situation, but saying you feel "sorry" for me annoys me. Saying you're sorry brings a negative connotation to what is now my life. I don't want you to say "I'm sorry", I want you to want to learn more about why I can't do something. I want you to ask questions. Don't feel sorry for me, because I don't feel sorry for myself.

[creatinganewnormal]

The beginning of the end (of my excellent health)

August 4th, 2013. approx 5:00 am.

I am rushed into the ER by my mom and dad. I had called them around 3 am and they picked me up from my summer camp job. My stomach was in extreme pain and, gross alert, the blood in my stool was still present (more on the beginning of that in a bit), and I had gone to the bathroom about 4 times the night before. 

I was asked multiple questions. I answered multiple questions. I had multiple tests done. Unfortunately, we had no idea what was happening. There were several theories, cancer was even on the list of possibilities. 

As soon as I was done with basic question answering, IVs of antibiotics, and a few non invasive tests, I was moved to the GI floor of the hospital. I had a few scans, and a slight blip was noticed on the scan. It was possible that I had a rip in my intestine. I had another scan, and it was revealed that the first scan was a false positive. 

My parents stayed with my until they had to head back home to sleep. 

The next day I had my first Colonoscopy. The first of two before I turned 21. After I went home, my (now) doctor called and told me I could stop taking the antibiotics I was prescribed because, GOOD NEWS, it wasn't any type of infection. But, BAD NEWS, it was chronic. It was an inflammation of my colon leading to bloody stool, diarrhea, and abdominal pain- Ulcerative Colitis. 

I had started the life long journey of living with an auto-immune disorder. But, let's go back to the very beginning of this whole ordeal.

Easter, 2013

I was at my Grandmother's house, and after i used the bathroom, I had noticed blood on the toilet paper. It happened on and off for the next month. Then, I told my mom on the car ride home about my observations. She had me set up an appointment with my family doctor. 

My doctor asked me questions I had no idea I'd be asked every time I'd go to a medical check up from then on. I answered them as accurately as I could. My doctor thought is was a hemorrhoid or an anal fissure. I was told to take stool softeners and eat food high in fiber (a bad idea looking back) but I followed my doctor's orders and noticed a plateau of  symtoms until 2 days before being admitted to the hospital. 

August 3rd, 2013

I was at a baseball game with some friends. I had gone to the bathroom 3 different times during the game, and once before the game. I had stomach pain, and I was nauseated. As I tried to sleep that night, I was still feeling sick and feeling pain. As the night went on, the pain escalated  and I got up many times during the night. Once I called my parents, I sat and waited. 

The worst night of my life had just begun.