If you’re reading this you’re either curious, effected by UC (the short way of saying Ulcerative Colitis), or know someone that’s effected by UC. Any of these reasons are ok. Not everyone wants to hear about it. Not a lot of people even know what it is. The truth is, talking about Ulcerative Colitis is not a glamorous topic. It involves talk about managing not curing which is not always appealing to the sufferer or a loved one. It involves bathroom talk which ….let’s face it, not a lot of people want to hear. It involves having to plan every outing, just-in-case. It involves figuring out how to deal with people when the ask “what’s wrong?” but don’t actually want to hear about what’s wrong.
When I First Started Realizing Something Wasn’t Right
I started my path to my ulcerative colitis diagnosis roughly 10 years go. This is where I talk about things that people don’t want to hear. After the birth of my youngest son I started noticing I was getting “gassy” a lot. I constantly felt bloated. I started taking things like Gas-X , Pepto-Bismal and trying to change my diet a bit, but it didn’t help. I noticed I was having more need to excuse myself to the restroom. Even when I did, the relief was only temporary. I started to become uncomfortable in a lot of situations not knowing about what would happen. I was afraid of putting myself in embarrassing situations so I’d shy away from things. After about a year or so of dealing with it, I finally decided to see a GI doctor.
My First GI Doctor Visit
The doctor was nice. He seemed to listen to me. He decided to do a colonoscopy. Honestly the prep was the worst part. I did a follow up visit after the test. Basically he said that he didn’t see anything unusual except maybe some mild inflammation. He gave me some pills that I don’t even remember the name of anymore. I took them for a couple months but they didn’t help. If anything, they made me feel more bloated. I told him this and he told me I didn’t have to take them anymore. It was disheartening to hear that he really didn’t have an answer.
I felt like the pills were just thrown at me because there was no other answer. I wasn’t real confident in going back to see this particular GI doctor so I just didn’t. I tried to manage my symptoms myself. Cutting back on carbonated drinks. Virtually eliminating spicy foods. Staying away from greasy foods. Continuing to take things for bloating and indigestion. Eventually my symptoms got worse.
My Symptoms Started Escalating
I was not having diarrhea along with the bloating, and gas. I was also starting to get abdominal cramps and discomfort in my left side. Still I tried to manage it myself. Trying calming teas meant for digestive health. Drinking more water. Now taking anti-diarrheal medications as a daily med just to make it through my work days and other obligations. So I started asking around about GI doctors. I finally got a recommendation that seemed trust-worthy. I called and made an appointment.
About a week or two before this appointment with the new GI doctor though something happened. I was standing at my sink doing dishes when I got terrible abdominal cramps. They hurt to the point that I couldn’t stand up straight. I sat down in my computer chair in the dining room. I had a strong urge to use the bathroom. I ran upstairs as quickly as I could. But I didn’t make it. I was horrified, how could I have not made it. Until I actually got into the bathroom. I realized I didn’t “have an accident” I was bleeding. It was a lot of blood in my pants and still more in the toilet. I called my dad to come watch my kids so I could go to the emergency room. My husband was at work.
They did a test and confirmed I was bleeding “from that area” and they told me to make sure i keep my appointment with my GI doctor.
So I meet with the doctor. I seem to have a lot more confidence in him. He also schedules a colonoscopy along with a couple other tests. When I woke from the colonoscopy I was still back in the testing room. The nurse told me “Yea there’s definitely something there. You’re fire engine red” So they wheel me back out to a cubicle area where my husband is waiting and the doctor tells us I have ulcerative colitis. It was evident in the colonoscopy. I honestly felt some relief. At least I knew what was wrong with me and we could start treating it. I had high hopes of feeling better soon.
My Disease Progression
I started taking a pill. It began with an “A” I can’t even remember anymore. It helped for a while. After about a year though, it seemed like it wasn’t helping as much. I was having flair-ups. Bleeding, cramps, pain, frequent bathroom visits, etc. So he doubles my dosage. Again, I feel pretty good for a few months, ok for several more months, then eventually it felt like it wasn’t working again. So my doctor moves me up to the next “tier” of drugs. A stronger drug. It requires me to get my blood drawn every so many months. Again worked great for a year, stopped working doubled dosage, yada yada yada. Until now where I was again moved up to the next tier of drugs. I need to give myself a shot every other week. Routine blood work is required again. This one has a risk of causing liver cirrhosis which is why the blood work is necessary. After using that for so long….you guessed it, it seemed like it wasn’t working as well so increased it to weekly shots. When that didn’t work infusions were suggested. I’ve yet to jump on that train though.
I have 4 kids, I work part-time in a hospital. I’m only 39 years old. I’m not stopping. I can’t stop, I won’t stop. Anti-diarrheal is a daily medication for me. Humira shots weekly. Gas-X or something similar occasionally. Always mapping out and planning for restroom visits or the day that “I just don’t make it”. I keep a change of pants, underwear, and a pad in my car. I’m always reading about the newest treatments and progress with Ulcerative Colitis treatment. I’m always considering looking at a new doctor or even alternative treatments. I’m hoping for something to help to avoid surgery or ostomies in the future.
Standing in line at the pharmacy is almost impossible. I’m grateful for mail delivered shots. I’m thankful for public restrooms along my commute to work. I’m thankful for generic anti-diarrheal meds at Walmart. I’m thankful I have an understanding husband. A deciding factor upon going somewhere is if I’ll have access to a bathroom.
My Hopes and My Helps
I’ve realized over the years that, people that aren’t effected by UC in some way really don’t want to hear about it. So it can be hard. People don’t understand why you seem flaky about going out or need to cancel because of a flare up or a bad day. There are several resources and communities out there though.
The Crohns and Colitis Foundation has both support groups and an online community. I’ve found the online community helpful in talking and asking questions to other people dealing with the same issues.
It’s hopeful to see some of the new treatments, new research, and new break through with the treatment of Crohn’s and Colitis.
Educating yourself is half the battle. Preparation is the other half. It’s possible to keep on living your life the way you want to. Maybe you just have to make some adjustments.
If you’re just figuring all this out yourself here’s some things that helped me.
- Stick to trustworthy sites like Crohn’s and Colitis foundation, Mayo clinic, and other trustworthy medical sites. It helps to seek out other sufferers online via blogs, social media, and online forums like the one on the Crohns and Colitis foundation site.
- Keep a food log. There are some foods you’ll find you just can’t eat anymore if you don’t want to suffer the consequences. As much as I love popcorn and corn on the cob I know I have to abstain from it lest I pay for it the next day.
- Talk to your GI doctor, dieticians, other dealing with Ulcerative Colitis, and your pharmacist.
- It’s ok to try other things in addition to your regular treatment. You may find that a certain diet may help you. Maybe a certain tea seems to help. If you want to try some alternative thing like accupressure, massage, etc most time it won’t hurt. I’ve personally been reading about research with CBD.
This is a journey. What may work wonders for one person may not work for the next. It’s easy to get frustrated but keep educating yourself . Eventually you’ll learn what helps and what doesn’t help for your body.