You Know Your Body Best – Part 2
In part 1, I gave a little backstory of some of the things that led me to having surgery for ulcerative colitis. Now, I want to share just how detrimental hearing that I would be “cured” was for my family and me as well as express the importance of following up after any surgery. Always.
Once things settled down a bit with my health, my parents and I were under the impression that I no longer needed a GI in my life. I went to a couple and they did not seem to be helpful nor did I appreciate their bedside manner. After that, I refused to see anyone else for a while.
After all, I was CURED, right?!
I want to express how important it is for anyone who has ulcerative colitis (UC) to have a gastroenterologist they trust and to follow up with that person at least once a year. I know so many people who were diagnosed with ulcerative colitis only to then be re-diagnosed with Crohn’s Disease.
However, because my parents were told that I was cured, whenever I would tell them something was wrong or didn’t feel right, I was dismissed. It was looked at as a mental thing and “deep therapy” was what was recommended. I don’t think my parents ever believed me when I said something was going on because in their minds, it had been ingrained in them that I would be completely 100% fine following my total colectomy.
For years, all I heard was that I would be fine if I just got a part time job or began more intensive therapy.
Basically, I was told that it was all in my head.
Other than a colorectal surgeon who my case was turned over to when I was about 17, I did not have a doctor I trusted. I essentially used him as my gastroenterologist because he was intelligent, had a wonderful bedside manner, cared about me as a person, and whom I trusted with everything in me. The very idea of starting over with someone new was not appealing – especially since in the back of my mind I wondered also if my issues were emotional. Again, that CURE word wreaking havoc on me again.
I went through a tremendous amount between the ages of 19-24 which led me to have a permanent ostomy. That, surely would be the CURE, right?!
It was a vicious cycle of continuing to know something wasn’t right with my body but having no one believe me or take me seriously.
It made me feel crazy…
…until I met my boyfriend over three and a half years ago.
I would say little things to him but in the beginning of our relationship especially, I did not want to be a complainer. He actually told me one day that something wasn’t right. I went into my story a little bit and also the responses I would get from my parents and physicians which led him to bring up the fact that sometimes you do need an outsider to come in and look at things differently. He began expressing how he felt like my parents and I had been in this situation for so long that we were almost used to how things were. But he knew in his heart of hearts that something was not right.
As we got closer, I began seeing a top GI who sent me for a wide variety of tests. I did get answers from mostly every test I had done but nothing that pointed me in the direction of why I was feeling so, so terrible.
A year and a half later, it was discovered that I had a huge mass of infection and several abscesses in my pelvis that had been there for years.
I had two surgeons working on my case, each with 30 plus years of experience, and neither of them saw anything so imbedded in a person’s body.
A few days after being discharged, I was back in the ER with two more abscesses.
To wrap this up a bit, in addition to them finding all of the infection inside of me, that mass impacted my fallopian tube and ovary to the point that it needed to be removed. I can’t help but think about how that could have been saved had this been discovered sooner.
My point in sharing all of this with you is to remind you that IBD (Crohn’s Disease and ulcerative colitis) are chronic diseases. They impact your immune system so just because you are eliminating one of the organs that the immune system is attacking, does not mean you are fixing a person’s immune system in general. I don’t mean to scare anyone and I know many people who have very successful surgeries for their IBD. However, please, please, please follow up and stay on top of your disease. Even if you were told you were cured. Even if you feel completely fine. Just be on the safe side. You don’t want to wake up one day in a dire state that could have possibly been avoided had you just followed up with an appropriate physician.
I also want to add that inflammatory bowel disease (IBD) can cause extra-intestinal manifestations.
Meaning, IBD can impact other parts of your body outside of your digestive tract. For example, I suffer from pyoderma gangrenosum which is pretty much like having IBD on your skin! Thankfully, it is in remission now (knock on wood), but this is also treated with prednisone, immunosuppressive medications and biologics.
I hope everyone who reads this knows that I don’t share these sometimes horrific experiences to frighten anyone. I share because I don’t want anyone to make the same mistakes I did. I also want to make it known that there is no cure for either Crohn’s Disease or ulcerative colitis so if you are someone who was told otherwise and you are still not feeling the way you did pre-diagnosis, it is not in your head!
You are not alone.
There is so much misunderstanding surrounding inflammatory bowel disease and the lack of education and complexity can really change a person’s life. It has changed not only my life but that of my parents as well. They believed I would be cured and still have a hard time accepting that I will never be the Marisa I was before I was diagnosed. It has forever changed our relationship.