31 Days of Awareness – 31 Things About Marisa
For the final day of Crohn’s and Colitis Awareness month, we asked Marisa – our phenomenal contributor and IBD advocate – 31 things about herself. We hope her candid responses help start a conversation among others and truly demonstrate that no one is alone in managing IBD
2. I was diagnosed on: July 6, 2000
3. My favorite hobby is: Being around animals
4. My co-morbid conditions include: Pyoderma gangrenosum, gastroparesis, chronic migraines and post traumatic stress disorder
5. To treat my IBD, I use/take: I have undergone 14 major surgical operations and now live with a permanent ileostomy. I am currently not on any IBD-specific medications. I do take vitamins daily and have a supplemental shake daily.
6. My biggest IBD trigger is: I have never been able to find a trigger for my IBD. Things would just happen with no rhyme or reason.
7. My most challenging IBD symptom is: The unpredictability. I hate that for not only me but my family and friends as well. I feel like if I come off so unreliable.
8. My strangest IBD symptom is: Having pyoderma gangrenosum is more on the rare side. That really threw me when I was diagnosed with that autoimmune disease. My other IBD symptoms I wouldn’t consider to be “strange” now that I know I am not alone 🙂
9. I wish I knew more about: The realities of what life would be like post total colectomy. My parents and I were told I would be “cured” as though I never even had ulcerative colitis. Although my parents and I saw very quickly how that wasn’t the case, the fact that I SHOULD be fine never left my parents minds… until fairly recently. It has made me feel more guilty and caused more friction between our family because of this.
10. When I think about IBD, I think: Completely life altering – those who haven’t experienced it or are a caregiver to someone with the disease, cannot even fathom.
11. The most frustrating part about having IBD is: Lack of understanding from not only the public but most medical professionals as well. It makes it very difficult to get the right kind of care. I also find the new laws about pain control to be devastating to patients now (and in the future) because quality of life doesn’t seem to be top priority in a lot of doctors’ minds. I also understand that doctors are afraid to lose their license by not complying with these new laws. It is just awful for those of us who have an invisible, chronic illness and need help so we can feel like productive members of society.
12. During an IBD flare, I worry most about: Being a burden on my family. Having to go to the hospital (PTSD)
13. One thing I took for granted before my diagnosis is: How I should have been grateful for all of the things I was able to do and achieve without any thought. Eating whatever I wanted without knowing the details of every organ in my body was nice as well.
14. When I tell someone I have IBD, the response is usually: “What is that exactly?” Or “I know someone with that and they did this and that and are fine now”
15. When someone tells me they have IBD, I think: Depends who it is. I often wonder if they are confusing it with another condition (such as IBS) but once I know for sure that person actually has the disease, I am both happy that someone else understands but also feel terrible that that person is suffering.
16. When I see commercials for IBD treatments, I think: On one hand, it is good to get the exposure, but on the other hand, please don’t minimize in the commercial what it is patients with IBD go through. It causes even more misconceptions.
17. My best coping tools are: Being around my dogs and family. When I am able to do even a little exercise, that mentally helps me too. If not, sitcom re-runs are my best friends. Writing helps me too if I can focus that day.
18. I find comfort in: Heating pads!! My own bed and my own “people” being around me. I like wearing pajama pants because they are the most comfortable around my stomach. I also find enormous comfort in doctors who I believe have a good handle on my situation and also get me as a person.
19. I get angry when people say: “But you had surgery, aren’t you cured?” or “Have you looked into this diet?”
20. I like it when people say: “I am so sorry you are going through so much. Please know I am always here if you want to talk. I may not understand everything but I am always here to listen and talk about whatever- even if it has nothing to do with what is going on. Whatever you need, let me know.”
21. Something kind someone can do for me during a IBD flare is: Re-assure me that they believe I am suffering and understand that I may need to lay in bed or on the couch to try and get myself back on track. Just, being there, is enormously kind and comforting for me. Helping to make calls if needed is also a huge weight that is lifted from my shoulders.
22. The best thing(s) a doctor has ever said to me about IBD is: “This is not in your head. All of this is out of your control. Nothing you did caused this or can help cure it.”
I used to have a contract before any surgery for my surgeon and anesthesiologist to sign prior to the operation. It listed out things I needed (that hadn’t been done before) and by agreeing to these things, I knew I had someone who understood how difficult this all was and would truly do everything in his/her power to help.
23. The hardest thing to accept about having IBD is: I will never go back to how I was before I was diagnosed. I will always have an ostomy, scars, have difficulty swimming because of skin irritation, and eating will always be a challenge. I will also always have to deal with doctors and worry about something going wrong.
24. IBD has taught me: Small things don’t matter and obsessing over superficial things is a waste of time and energy.
25. The quotation, motto, mantra, or scripture that gets me through a flare is: “This too, shall pass…”
26. If I could go back to the early days of my diagnosis, I would tell myself: “You are in for a very rocky road but the sooner you really connect and open up with other people, the happier you will be. The more you will accept things and not feel like you have to be phony all of the time, the better you will feel about life and anxiety will be less. It may be difficult but you care more about these things than anyone else does.”
27. The people who support me most are: My boyfriend and parents
28. I became an advocate because: I needed to turn the horrible experiences I have had into helping people. I always felt so alone and it was life changing to me when I saw a video of someone talking about things that I was thinking and feeling for years. It showed me I wasn’t alone and that is why I tailor my advocacy towards sharing vulnerable topics – because that is what I always needed. I want those who are suffering to feel validated and understand that people do get it – even if it isn’t their family, friends or doctors. Other people do, and I never want anyone to lose hope. I know how easy that can be with this disease.
29. The thing I most wish people understood about IBD is: How much we need support and understanding. Guilt and feeling like a burden affect so many people with IBD and the more understanding other people can be – friends, family, bosses, co-workers, etc the easier it’ll be for patients to go through life.
30. Crohn’s and Colitis Awareness Month is important to me because: It provides a time for those people who don’t usually share to feel like this is their time to open up to the world about what it is they have been experiencing with their disease. This often leads to more friendships and connections being made which is wonderful. It might even help other people in their life understand what it is they go through. I think advocates like myself work hard to raise awareness and share experiences all year long but it is always nice to have a month dedicated towards recognizing these debilitating conditions.
31. One more thing I’d like to say about life with IBD is: We need people so even though your inclination might be to push people away, unfortunately most of us can’t do this alone. And if we do, it is that much harder mentally. Also, the only way you will survive this disease is if you have a doctor/medical team you trust.
Spreading awareness doesn’t have to stop with the end of the month. Continue talking, educating and sharing your stories and experiences with those around you! You are not alone!!!