Chronic Ulcerative Colitis Convo

This is my second installment of interviews with others who have invisible disease. For certain reasons, this interviewee has decided to stay anonymous.

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How do you spell what you what have, and what is it like?

Chronic Ulcerative Colitis. ( http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/ ) <—This link describes Colitis!

Dealing with it...well, my case is a bit different because the doctor has messed up with my medication. I’m dealing with an adverse version. Pain-wise, I have been at about a 6 or 7. However, when I use the restroom, it escalates to an 8 or a 9. Sometimes, it is intense pain. I have had days where I wake up in pain and cannot leave my bed. Lately, more than not, I have been having a lot of blood in my stool. It causes chronic pain, so you know it is going to cause other issues, too.

As of right now, there is nothing I can do to treat the pain. I can’t take ibuprofen, Tylenol...because it affects the organs. I cant drink alcohol because of the same effect. Ever since getting diagnosed, I have completely cut alcohol out of my life.

The only thing I can do to help with the pain is smoke pot, but that is still illegal for the most part. It is one of the reasons that chronic ulcerative colitis is on the medically-eligible marijuana list. Right now, I don’t smoke, as I don’t have a medical card. But, I have before, and it completely rid me of pain that night.

Marijuana does drastically help, but it is something that I could easily get fired for while having a factory job. In fact, it is hard to not talk about the job I have while dealing with this disease. I work at a distribution center which means I do a lot of heavy lifting. I am lifting heavy 50-60 pound items. Some days, it is really hard, especially when I feel really bad. 

Do you get breaks from your boss at all?

The place I work pretty much lets you work at your own pace. If you need to use the restroom, you can do so, as long as you can keep up. I’m at a place where I need to be able to use the restroom whenever I need to. (https://www.disabilitybenefitscenter.org/disability-work/colitis)

You get the cards you’re handed. Luckily, I have a good mental background, so I don’t really get depressed about it. But, what ya gonna do? 

What are the top three things you wish people knew?

1. I wish people understood the dramatic amount of pain I expirience versus the little amount that I show. While I show the little amount, it would be nice to have understanding of the pain that I don’t show. Having no way to quench that pain is hard, too. Very little people have understanding of illness that is constantly causing pain.
2. One thing I wish I would have known is how expensive the medication is. Without insurance, the medication is, per month, $1,600. That’s just for two meds. That’s a suppository and pills. The suppository cost $900 and the other costs $700. The trouble I’m in is because I got in an argument with a nurse where she thought I didn’t need it and took me off. Now, I have been off for three months and had raising pain since. 
3. If you have it, watch your diet. The thing with my disease is that once you fall into remission, it will come back eventually. On a day where it isn’t active, I could drink a whole bunch of soda. When it is active, however, it’s best not to. 

Trigger?

Fun-fact: my disease is like Crohn’s disease, but it is affects a different organ. I was told that I had an infection in my intestines, and my body fought my body, and I ended up losing. 

With the meds, there are some side effects. I have extreme cough with the suppositories that literally has a chance of me being left winded. I have had symptoms that are close to bronchitis.