It was just about a year ago – November 2017 – that I noticed a nagging pain in my lower right side when I was doing yoga. I have a long history of pelvic pain and adhesions so I tried not to think too much about it but I had a gut feeling (see what I did there!) that something was very wrong.
The holiday season was under way and I didn’t have time for this so I swept it under the rug. A few weeks later while walking a Christmas stroll with my daughter I was almost doubled over with horrible GI pain. The buildings on the route were old and none of them had an open bathroom. I was a little panicked but I finally found a restroom. It turned out be “only” gas.
The pain and inflammation were picking up and I couldn’t even lay on my side. It was making yoga miserable. I called the gastro and made an appointment for January. I’ve had a long history of IBS and urgency but prior colonoscopies didn’t pick up anything. I was used to the urgency to poop hitting me about 10 or 15 minutes after I entered a store and walking around, and always thought that was just my normal.
I got a referral for a colonoscopy, and being me, I procrastinated about it until March. The weekend before the procedure I took my kids out. We had amazing NY pizza. I was thinking about how great it was that we finally had good pizza in Florida and how good life was.
I didn’t know that was going to be the last time I had pizza.
The big day arrived. When I woke up, the gastro told me that I had ulcerative colitis. I started out with a bang – it was pancolitis, meaning the ENTIRE colon was affected and it was, in fact “oozing.” We left and stopped to get something to eat on the way home. While we were at the table I started getting really nauseous and then I passed out cold in front of my husband. When I woke up I heard him crying and the paramedics were around me. I got whisked to our local ER where I spent a good portion of the day. I could barely stand up and needed help to get to the bathroom. When I finally was able to get there, I discovered that I had soiled myself while I had passed out. The prep didn’t go too well for some reason. I didn’t have clean clothes to change into except for the hospital gown.
That was my entry into the world of IBD at age 55.
The SCD Diet
I was pretty stunned at this turn of events but jumped into action right away. As a special needs mom I was familiar with GAPS, SCD and grain free diets so I sourced some things and changed my diet immediately. Initially I had to take prednisone for a couple of weeks, then tried balsalazide for awhile. To my distress, the incontinence was an ongoing problem so I stopped it. After a few months I switched to 100% SCD and tried not to take any more meds for a few months but after distressing, labor like pains and continual bleeding it was very apparent that I still needed to be on them. I had a sample of Apriso from the doctor and that plus the SCD diet seems to have greatly reduced my symptoms.
IBD and Mental Health
After the diagnosis, I think I jumped into everything so fast that it took me months to really start to notice the effects on my mental health. I really like to think I’m a badass but I was scared. I already had a neurological condition called cervical dystonia, (read more here) I was a special needs mom and now this?
I didn’t know what I was going to do when I had to take my 17 yo son (who has Down syndrome) out and the urgency hit. He can be pretty stubborn and is beginning to balk at coming into the woman’s bathroom with me, though I do try to find family bathrooms as much as possible. I could just see myself having an accident while caregiving because I obviously I have to tend to his safety first.
Life changed on a dime for me like it has for so many others. With the risk of accidents and other unpredictable and at times noisy GI symptoms, it seems easier to just not leave the house. When I go out shopping, I always have to case where I am so that I know where the bathroom hits. From the time I feel that first cramp, I have maybe 5 minutes to find a bathroom. And if I have my stubborn son with me, that’s pretty challenging.
I’ve read a lot of personal stories from others with IBD. The surgeries scare me. My kids need me, who will take care of them if I wind up in the hospital for extensive surgery? After my second ER visit this year my son said he was worried about me. It broke my heart.
The stomach pains are awful. The depression is unpredictable and hits me hard. I’m sure anyone who knows me well can tell when it happens because the light just goes out of my eyes. My first Thanksgiving just passed. I made some grain free sides for myself but they just didn’t taste the same. The reality of the Christmas season without the traditional foods that I loved started to get overwhelming.
How Sobriety Helps Me Cope
Many people who have IBD are in a dark place. It’s an overwhelming set of circumstances and mental health help is NOT offered by medical professionals.
Likewise, people in recovery struggle with some form of depression and anxiety. Getting a life altering diagnosis like IBD is traumatic and mind blowing. I’m really grateful to be sober and don’t miss my old life at all. But I do struggle with all that’s on my plate. The longer you stay sober the more things you find that you’re powerless over. To that end, I’ve developed a self care tool box over the years that serves me well since I can’t get to a lot of meetings because of my health issues and family responsibilities.
I’ve found a lot of similarities in coming to terms with IBD and my early days in sobriety.
Being all in. In early sobriety a friend said that whatever I would do for a drink or a drug, I had to apply to recovery. That means to go to any lengths to stay sober. The same applies to IBD for me and staying on such a restrictive protocol. It’s hard as hell, but for the sake of my family and myself I’m willing to go to any lengths that I have to do keep this beast under control. Early in recovery, I used to worry about how I was going to handle potential drinking situations…like what was I going to do New Years Eve or when I got married (yes, I really thought about this!) Now it’s simply a non issue. I don’t drink. It’s who I am. I have to learn and practice the very same principles with managing my IBD and it’s going to take some time..I still get down about what I can’t eat any more.
Daily meditation and quiet time. I have devotions before I check social media or do anything else. It keeps my head straight.
Yoga has become an important recovery modality. So much so that I just signed up for a 200 hour teacher training. I’m not entirely sure of what I’m going to do with it yet, but because of my ongoing mental health issues, I feel like I need to take things to a deeper level. Kind of like the rehab experience that I never had.
Movement. Anxiety cripples me. And makes my illnesses worse. Sometimes it’s just THERE and won’t go away. Doing cardio (Leslie Sansone works great for me) is a great way to burn it off.
Social connections. A lot of this takes place online now. And that’s okay for where I am today. I used to think that virtual connections didn’t really count but right now, they’re vital. I found a couple of good groups for IBD, dystonia and being a sober mom. There’s a big chronic illness and recovery community on Instagram. Knowing other people go through what I do is a relief. Helping someone else out is how I carry the message and get out of my own head.
Doing something creative. I keep this very simple. I like stickers and use them in my planner and journal. I also like to cook (which is a good thing because I have to cook every. single. thing. from scratch now to stay compliant on the SCD.
This is my first holiday season with IBD. It’s going to be different and I’m going to have to just ride it out. Going on close to 10 years of chronic illness and disability now has taught me a lot about pacing myself. If I need a down day or more, that’s okay. I still struggle with future tripping, fear and worry and continually have to remind myself to live one day at a time…and trust that the same God who watched over me in my alcoholic insanity still has my back today as I fight IBD and dystonia.