****Warning for the squeamish, this post will contain talk about my stomach and poop talk. Leave now if that’s too gross for you.****
I’ve got a secret I’ve been holding in for six months. It’s something I haven’t talked about with anyone at all beside Master, but it’s something that’ll be very obvious after my upcoming surgery, (yep, surgery) so it’s finally time to say something about it here. Back in September when I was diagnosed with gastroparesis, I was actually going to the doctor for lower bowel problems. I had constipation come on suddenly, and nothing I did was helping. I took every single laxative that exists over the counter (I even doubled up on some of them), I took enemas daily, I took suppositories. It was three weeks of utter Hell, and after all that time I finally called the doctor and made an appointment with my specialist to be seen. To me, this was the worst thing you could need to be seen for, so I kept putting it off hoping that if I tried different things or combinations of things I might get some relief.
The specialist prescribed every single prescription laxative that exists. Lots of laxatives. Not one of them worked. I even tried a bowel prep. Nothing helped. When the bowel prep didn’t work, the doctor sent me to the emergency room. They did almost nothing, which sucked and was humiliating. I went back to my doctor.
At that point, the doctor ordered a gastric emptying test, and that’s when we figured out I had gastroparesis. However, a change in my diet didn’t let me use the toilet either. I was sitting on the toilet for hours each day, while my legs went numb feeling absolutely miserable and sick. Not to mention that laxatives dehydrate the fuck out of you so my POTS was even worse.
There were even a couple of months during this time that, because of the bloating from the laxatives coupled with the actual stool piling up, that I couldn’t fit into my own underwear and had to wear Master’s. I was desperate and humiliated and I kept going back to the doctor. They tried me on some scary medicines that are meant to help gastroparesis but lead to more fainting. I was taken off of those.
At that point, my current specialist apologized but he said there was nothing more he could do. He said it was probably from the gastroparesis, but that I had gone through every drug he had. He didn’t see the purpose in running any tests because he didn’t think that they would show anything. He also said that with all the health problems I was having, this was probably as good as it could get. I went home in tears. I could not imagine my life that way.
I stopped taking the laxatives, and I felt a bit more comfortable, at least. I wasn’t as bloated (but I would still bloat up quite a lot at night, which is a gastroparesis symptom, anyway) and I didn’t have to deal with all the side effects from the laxatives. I was barely going to the toilet though, and I was still spending hours in there. It was awful.
The day after I had the “this is as good as it’s gonna get” talk with my doctor, Master called another GI specialist for a second opinion. This could not be my life! We had a three week wait to see the specialist, and as soon as we got in there, he told me that he was pretty sure he knew what my problem was, but that he couldn’t do anything about it. So, he sent me to one of the top colorectal surgeons in the area.
The new doctor put me through a lot of testing. I went through a colonoscopy (which I was expecting, but the first doc saw no point in), I went through anal manometry, I had manual rectal exams, and I did a biofeedback test. I was supposed to do a barium enema, but the one that wound up getting scheduled first was the sitz marker test.
The sitz marker test is where you swallow a capsule of radioopaque rings. It looks like this.
This was the only test I wasn’t unhappy about having to take, because it wasn’t invasive at all. You swallow the pills in front of the Xray technician, and then they take a picture of it in your stomach. Then, you come back in five days and they take another Xray. There are twenty-four rings in the capsule. If more than six remain in your colon, you have a slow colon. After five days, I still had all twenty four capsules in my colon, and they were mainly on the left side (but there were some scattered throughout, some almost as high up as my stomach). They weren’t on the left corner, they were running all down in random places. I had to wait for my doctor’s appointment, which turned out to be a week later.
My doctor had already warned me at our first meeting, that I might need to have a colectomy. A colectomy is surgery that involves removing your colon. I was shocked. I couldn’t believe that this could be happening. This all happened suddenly! I’ve never had constipation except for minor constipation for a couple days following surgery or something.
Yesterday was the day I went in to get my results. The doctor was very nice. The first thing she said to me is “You don’t need to have your colon out.. Yet.” Yet? SCARY.
She explained that with most people, she’d take their colons out, because that’s the treatment for hypomotility of the colon. However, she was really worried because she’s only operated on one other person with Ehlers-Danlos syndrome. She did a colectomy on that person, and then shortly after their small intestines shut down. Then their stomach completely shut down. She said that she was worried that would happen to me, and so she is sending me to a super specialist from the Cleveland Clinic (who works here in town) who works with Ehlers-Danlos patients to make sure that we don’t do the wrong thing.
In the meantime, I’m still having surgery. It’s not minor surgery, but it’s a lot less scary and dangerous than a colectomy. I’m getting an ileostomy bag. I haven’t ever known anyone who has had this surgery so this is my first time learning about all of these things. When I was told I may need a colectomy, I did some research to get familiar with things, so I’m not at a total loss at to what these things mean, but the doctor did explain.
She told me that ileostomy is reversible (the way she is going to do it) so we know it’ll help with all my bathroom woes, and we know we can reconnect things if we need to. I may not need to have a bag permanently, but in the meantime, it is my only option for relief. The downside? I’ll need to wear an ostomy bag. She sent me home with a booklet about ostomy surgery, and it included a couple of sample ostomy bags to show you what things look like.
I talked everything over with Master and he agrees that it’s the absolute best course. The surgery will be done laproscopically, so it’ll have a shorter healing time than some other surgeries, and I’ll be in the hospital three to seven days as long as there are no complications. I’ve never had a surgery this involved, but I admit I’m very happy that we’re not taking out my colon right now. That is very scary and very dangerous surgery. This is scary to me, but only because I’ve never been through anything this involved.
I’ve only told two people that I may need to have my colon removed, and one of them was surprisingly a dick (despite being a good friend up until then), and the other was pretty supportive. Family members keep telling me things like “GET ANOTHER OPINION!” I’ve already gotten three opinions and I’m going to get a fourth. I don’t think that we’re jumping the gun here. It has been over six months that I’ve been dealing with this. I need my life back. I’m willing to do whatever it takes to regain even a modicum of quality of life here.
I don’t know the exact surgery date yet. I need to meet with the doctor again and then work around Master’s new contract (which he still hasn’t started yet, WTF?) but I’ll update here when we get it done.
I do not plan to post anything about the actual ostomy itself. Having a bag will not change who I am, and yes, it’ll be visible in photos (you can’t see through the bag, though and we plan to buy ostomy covers to make it even less visible) so I wanted to finally admit something I’ve been going through for months now. I don’t like discussing poop, and I only told two of my friends (one of them was an online friend) because I had no idea how anyone would react. Plus, it’s an awkward topic. Still, this must happen. I cannot live this way.