My Experiences in Two Separate Hospitals as an IBD Patient

Living with any kind of invisible, chronic illness is insanely hard and inflammatory bowel disease is no exception. Therefore, it makes a world of difference when we are being cared for by people we trust and who we feel respect us as human beings.

Having suffered from IBD for 16 years, I have experienced both types of care.

From the ages of 13-26, I was treated at a hospital that was well known and respected for the quality of doctors, advances in technology and research, etc but when it came to patient care, words can’t even describe how traumatized and violated this place caused me to feel.

If it wasn’t for my doctor calling the shots and understanding my needs as he continued to get to know me, I can’t even imagine where I would be right now.

For example:

  • I had doctors scream at me for crying at 15 years old when I was having drains put in me while I was wide awake.
  • I had a resident re-open my incision due to a wound infection that occurred after my total colectomy at my bedside without any form of anesthesia or pain control.
  • I have woken up without pain medication from surgery and the explanation was “we didn’t realize she would need any.” This was an open surgery to give me a temporary ileostomy; how could a person NOT need pain medication upon waking up in the recovery room?
  • I have had to spend close to 45 minutes trying to convince someone not to inject anal contrast in me since I had my rectum and anus removed. I was a young teenager and had to beg and cry until one of my parents came in.
  • I have had a doctor ask my mom to leave the room, get in my face when I was 16 {when I already had three major operations, no rectum or anus so surgical options were limited and had a permanent ostomy at this time, infection that my GI passed off as an eating disorder, so by the time it was dealt with it had spread through my entire body and I needed intravenous antibiotics at home for 10 months. Just to name some examples of what I had been going through at that time} and YELL: “Do you want to die? Do you? Because that is exactly what is going to happen if you don’t listen to every word I say!

I have so many stories of this magnitude, but I think I have made my point. The treatment I received at the hospital I was in for so many years was outrageous, disgusting, and impacted my mental health and perception of the world more than they will ever know. Not to mention, it hindered my ability to let go and surrender a tiny bit of control to those who presumably would do what was in my best interest. It made me have a huge disgust and distrust for most people in the medical field as well.

Fast forward to a couple of years ago (27/28 years old,) and I began treatment in a different facility.

I know most of you are probably wondering why I didn’t make a switch a long time ago but I couldn’t possibly leave the doctor who was caring for me because he was the only one I could trust in the medical field at that time. It was unfortunate he had rights at this particular facility but he was one of the best in the field and the hospital was also held in very high regard.

Anyway, it has been absolutely night and day in such a positive way! Going through all of the hardships we deal with as inflammatory bowel disease patients, we at least have the right to be treated with dignity and respect, have our opinions heard and valued, and work with our medical team as a partnership to improve our quality of life. After all, it is OUR lives, OUR bodies, OUR minds, OUR families and loved ones being affected, OUR careers, etc that are impacted - not our physicians or medical team.

That is how I feel being treated at this new hospital. I don’t feel like I am smarter than those taking care of me. I feel like my experiences and thoughts are being taken into consideration and implemented when necessary and/or possible. I feel like they genuinely care about me and do feel badly if things don’t go according to plan. Waiting comes with the territory with Crohn’s Disease and ulcerative colitis but the staff now actually apologize. So do most of the doctors. I never experienced that before!

I also feel like the doctors, nurses and staff trust me. I can ask for certain medications and doses that I know work for me and while they may not always be able to give it to me, I am not looked at like I just said the worst thing in the world. It doesn’t seem to raise a red flag like it does for so many other facilities. I have had situations where me mentioning the names of medications would just set off some kind of internal alarm. I honestly began just stopping asking for things because I couldn’t take the judgment.

At my most recent appointment where drainage of fluid, surgery, and other things were discussed, I wanted to ask my doctor if she would be able to give me some kind of pain relief to help minimize my need to come to the hospital while I was going through more procedures and tests to get to the root of the issue. As I was asking, I could feel my face become beat red like a tomato. She was fine with it because she had a clear picture of why I was in such debilitating pain, but the act of asking for relief caused me so much anxiety. It was nice to see that I could ask this doctor for things and she understood. I also appreciating her being okay with me stopping certain medications because of side effects that were embarrassing to even discuss.

Bottom line: it was nice to be able to feel like two mature adults talking about how to help improve my quality of life.

Why Did I Bother To Bring This Up?

When I shared with you some of the scary experiences I faced when I was younger as an IBD patient at a hospital that didn’t put patient comfort, care and support as top priority, I did not mean to frighten anyone. Most of the things that happened to me, won’t happen to you. But if some of them did or you are experiencing traumatic situations of your own, I want you to know you are not alone. I also wanted to share how life changing it has been to feel like I am now in a hospital where patient care comes first. If I was in a place like this since I was diagnosed, I think things would be a lot different for me.

If you have the opportunity to “shop around” for the right doctor and hospital, I highly suggest doing it. Another good idea if you are in the process of finding a new physician is to make sure he/she is affiliated with a hospital that focuses on patient care in case an emergency should arise.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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