The Importance of Hope

Yesterday, I had a serious talk with my boyfriend of over three years. As background, we met at a fundraising event for inflammatory bowel disease. May 18th to be exact, since that was World IBD Day in 2013.

I had no idea how much my life would change that day.

Not because I met the person I’m going to be spending the rest of my life with but because of all he has done to help me – both physically and emotionally.

Prior to meeting him and us getting close, the only people who really knew firsthand what I had experienced and was going through were my parents since I lived with them. They have also, thankfully, been by my side through every doctor’s appointment, every hospitalization, every surgery, etc. I have been very blessed to have such wonderful parents who love me unconditionally.

However, sometimes a person can be too close for too long to even recognize that there is a more serious problem at hand. It is also very understandable why we all have different ways of proceeding with things based on our unique experiences.

My boyfriend is the father of a child with Crohn’s Disease.

It took three years of him (all alone for the most part,) bringing his son to every doctor possible, pushing tests that doctors didn’t want to do, and just had to fight and fight because he knew something was wrong with his son when no one else believed him. One doctor even accused him of intentionally feeding him awful things that created blood in his diaper and stool! How awful!

Needless to say, these experiences changed him. He knew deep down something wasn’t right with his son and despite every doctor he took him to and every test that was performed that didn’t show a lead, there was still an enormous amount of perseverance to get the help he needed for his family.

This continued fighting and never letting up (plus doing his best not to start thinking he, himself, might be “crazy”) was what led to his son’s eventual diagnosis and the reason he has finally achieved remission {knock on wood}.

My parents, on the other hand, have had to fight tooth and nail for me in so many aspects following my diagnosis but the road to me being diagnosed with ulcerative colitis was much clearer. I had stomach issues (mainly diarrhea and severe pain at that point) right before a big swim meet that was a plane ride away so my mom wanted me to get checked out ASAP before my trip. During my initial exam with a GI, she found blood in my stool and a colonoscopy was ordered. I was diagnosed with UC right then and there. My diagnosis may have changed a couple times but regardless, the fact that I suffered from inflammatory bowel disease was evident very early on.

Why do I bring this up?

Two reasons.

The first being, for the past few years as I have mentioned in numerous articles, something hasn’t been right with my body. I knew it but hadn’t the slightest idea what was going on. My parents made me feel a lot of the time like I was just dealing with the emotional manifestations of all that has transpired over the years. That did make sense to some degree and I tried to wrap my head around it a little bit but my instincts have never been wrong about my body and health before. Internally, I knew there was more going on.

But I was losing hope. I was losing hope that I would ever find the answers I needed and that all of these doctors appointments and tests would be for nothing.

My boyfriend consistently maintained that he KNEW without a shadow of a doubt that I was suffering from something physically. I kept throwing the “you don’t think this is due to PTSD or a physical manifestation of my emotional baggage?” He emphatically said no and also wasn’t naive in that I definitely did have emotional issues to work through. He maintained that what my physical body was going through was something completely different.

Fast forward a year and a half and we are in April of 2016.

I had just left the ER (again) against medical advice since I was at a local hospital that I knew wasn’t going to be of help. This was the day before my boyfriend and I were both supposed to leave for Chicago to attend a conference for health advocates. We were really looking forward to not only seeing our friends and being part of such a wonderful event, but also of having a little time away from life. These conferences always rejuvenate us to do more to help the IBD (Crohn’s disease and ulcerative colitis) community, and we were looking forward to all the positives of that conference.

As he drove me home, my boyfriend expressed his strong feelings that we not get on the plane the following day but rather, go to my hospital with my doctors the following morning.

We have a real opportunity here,” he said in a very serious tone. “Your white blood cell counts have spiked and we have a real shot at finding out the root cause. We can either go to Chicago and risk something happening, all while not getting any answers to help improve your quality of life, or we can do what we both know needs to be done for the long term.

I cried a lot because this would be the second advocacy event I missed in only a month’s time (and therefore, he missed as well) and because I didn’t know how I’d handle not going, only for them to not give me any answers. I had no reason to believe anything would be different this time … except I believed in HIM.

I believed in my boyfriend and he was the only person I truly trusted at that point.

We stayed and I was admitted for four days. But, we left with answers which led to my latest surgery in June. The two surgeons on my case said they had no idea how I was still alive since I had more masses of infection in my system than either of them had ever seen in their 30 years of practicing medicine.

Here we are four months following my most recent surgery and my second point…

I have been having enormous insomnia and severe anxiety. It’s been impossible for me to focus most of the time and I never truly feel a sense of calm. In the off chance that I do fall asleep, I am plagued by awful memories of the hospital and recovery rooms.

In short, it has been an emotional nightmare for me for a long time.

My boyfriend’s life was saved because of therapy. Between his son being so sick and other personal things he was experiencing, he has said to me multiple times that if it wasn’t for his amazing therapist and medication, he wouldn’t be here with me today.

We have talked about my need for therapy for a while and I continued to maintain that I couldn’t handle the emotional aspects of what I was going through as long as I was dealing with so much physical trauma. He understood but I could tell didn’t agree. He let it be though. I wrote more about that topic on my website here.

Last night, we had another serious talk in which he told me he felt that I will never truly be okay if I didn’t begin therapy and get on some type of medication to help me cope better and sleep. He became adamant about how he no longer believes my sleeping issues were the result of a physical problem (other than pain) and that I will never truly be able to be a productive member of society and achieve all the things I want for myself if I didn’t get the help I needed.

I have a lot of fears related to this which I won’t bore you with right now. However, I do know I need help dealing with all that has happened to me.

We ended the conversation with him circling back to my original story in the beginning of this article.

I hope you take what I am saying as seriously as you did before Chicago. I fully believe, just like I knew something was physically wrong before, that we will never finish what we set out to do (improving my quality of life) if you don’t take this next step.

I have lost a lot of trust and faith in doctors and other people in the medical profession.

I have been dismissed numerous times when I knew something was wrong. I’ve been accused of being a drug seeker for simply going to the ER. I have almost died, at the hands of doctors I truly trusted. None of this is an exaggeration.

In all honesty, I am petrified. But I believe in my boyfriend and his intuitions. I believe him to not only be incredibly intelligent and knowledgeable about all I go through but I also know he understands me better than anyone else in my life.

We ALL need something to believe in.

We all need hope and that is a hard thing to continue to have after being burned for so long by such a crippling disease like Crohn’s disease or ulcerative colitis. We do need to find something to believe in, though. It is the only way we can survive in my opinion. Whether it be a family member, close friend, doctor, someone in the community, a therapist or anyone/anything else. It helps to have something to hold onto.

I have my first therapist appointment in a long time this afternoon and I’m incredibly nervous. I know deep down I need help. I know deep down I’ll never be the person I can be and was meant to be if I don’t get adequate sleep and deal with my inability to let go and relax a little. I know deep down that my issues go far beyond what I think and that needs to be explored in order for the slow healing process to begin.

Do you struggle with having hope after all you’ve been through with your IBD? Do you have that one person in your life who you feel gets you no matter what and never judges? Have you found tough love to be helpful along your journey or do you prefer a softer approach?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net 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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