Therapy When You Suffer from IBD

Like most people who suffer from Crohn’s Disease or ulcerative colitis (IBD), I have been greatly affected emotionally. To be incredibly blunt with you all: I feel like a complete mess most of the time. I have severe PTSD (post traumatic stress disorder), a lot of anxiety, and major insomnia. I know that may not seem like a lot to deal with compared to others but it is for me. It also comes with a lot of “side issues” as I tend to call them.

The labels I mentioned above were things I was diagnosed with. Not that I really needed a professional to “diagnose” me with these problems, but alas, that is kind of my way of telling you that I have been through the mill in the therapeutic world so if you are also feeling frustrated, upset, angry, or whatever other emotion you have every right to feel, please know that you are not alone. I get it. More than I wish I did but trust me, if anyone understands the mental toll that inflammatory bowel disease can take on a person (and their loved ones,) it is me. There are also 1.6 million Americans living with Crohn’s Disease or ulcerative colitis so I am sure there are a lot more people who can relate to these feelings of ours.

I tend to feel like a burden on my family and the people closest to me. I feel badly when they need to stop their lives to sit with me in the emergency room or hospital. It pains me when I know they are worrying about me day in and day out - but I also know that is just the way it is when you love someone. I just wish I could be a force of happiness and goodness in their lives, like I know I would be if I wasn’t going through so much.

Guilt is another thing that I have MAJOR issues with. I honestly have no clue how to cope with it, let it go, redirect it, or anything else for that matter. It comes up in my dreams. It eats me alive. Some examples are feeling like I wasn’t always there for my grandparents whom are now no longer with us. I never had the patience like I should have for my grandmother until I got a little older, began to understand her more, and saw how similar we actually were.

My grandfather, who suffered from Parkinson’s Disease, was difficult also because he wasn’t the type to open up but the more I think about it, I could have made more of an effort. I missed a lot of birthday and celebratory dinners and occasions because of how I was feeling that I now regret. I know I didn’t have much of a choice but still… it is time and memories I can never get back now.

Towards the end, his speech became very bad which meant that I didn’t speak to him on the phone very often since I would always feel badly when I couldn’t understand him (and he knew that) and when I did see him, our conversations were vastly different that normal. I have so much guilt associated with my parents and brother that I won’t even get into. Plus, obviously other things and people in my life.

So, my question to all of you is…

Given how complex inflammatory bowel disease can be not only physically, but emotionally as well, do you or have you found therapy to be helpful?

A little background on my mental health experience (or whatever you call it,) is that I have seen numerous therapists starting from the age of 17, four years following my ulcerative colitis diagnosis. I had been through the ringer by that point, as I know is the case for so many of you reading this. Some of the mental health professionals I saw were helpful in letting me vent about things I either didn’t want to share with my loved ones or attempt to help me with some of my new/worsening fears I had developed (aka triggers.)

My decision to go back to my most recent therapist sometime in 2015 was because I was so overwhelmed and frustrated with so many medical things. I knew there was something wrong with my stomach and was frequenting the ER to get stable (twice by ambulance) almost weekly. I was going through a battery of tests. Some of those tests showed a possible lead but nothing conclusive. I ended up needing to stay inpatient for four days, missing a huge health activist conference, only to find out that certain scans that were done indicated what my problem was three months prior.

Not to mention, given how out of control my migraines were (I won’t discount stress on this one), I sought out one of the best headache clinics {the second one I’ve been to} in the country. They did a comprehensive five hour orientation which also included $500 out of pocket for the psych evaluation/test given the psychologists did not take insurance. Long story short, I ended up voluntarily going inpatient which didn’t even last a full day thanks to PTSD and the fact that they had one protocol for pretty much every patient that did not work for me, went through two sets of three day infusions - two courses of the numerous medications per day, went to a ton of appointments, and just did everything I could to get the help I needed with no success.

I got my latest therapist's name from a recommendation and did really like her. She seemed to understand the complexity of things, didn’t try to put a ra-ra positive spin on what I was going through, and I felt comfortable with her. She also had a small dog in her office which didn’t hurt the situation.

The problem was: there was nothing she could say or do that I didn’t already know or try on my own. So it was more her just validating my feelings and the terribleness of what I was going through. That is pretty much how it has been with all of the therapists I have tried. The latter did help a bit but I know that isn’t all a mental health professional is supposed to do.

Or is it? Is it completely dependent on the situation and individual patient? What, if any, have your experiences been seeking mental health treatment related to your inflammatory bowel disease? If you have not sought help and are struggling emotionally, is there a reason why you haven’t moved the process forward?

I would love to know how fellow IBDers feel on this matter. I am very conflicted about whether or not I should start seeking counseling again. I am not sure if I just haven’t found the right one or if it is going to be a waste of time.

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