#j-pouch

Anyway. My plan for today is to queue up some self-indulgent gifs so I get the dopamine of notes when I get back to the ward and can check my phone again. At least the surgery isn't major enough that I need to spend all night in the recovery room this time, which I am deeply grateful for!

Yesterday, I packed myself in the car, drove around the block, and picked up my mother at the corner. Apparently, she was on her way to our abode in order to save time. It was an overcast morning full of birdsong. She put her cane in the back and climbed carefully into the front passenger seat, pulling her legs in slowly. After she buckled her seatbelt, I found directions to the Medical College of Wisconsin, Milwaukee, and began to drive. We live about an hour and a half away and we filled that time with pleasant conversation, reggae music playing quietly in the background.

The roads led us past cornfields and forest that gave way to suburbia, the buildings progressively getting bigger as we got closer to our destination. For two ladies from a rural town, the traffic was a bit scary and the roads confusing. We were, however, on time. I dropped Mom off at the door and parked in the large parking structure attached to the hospital. This was only our second time there, and I thought my doctor was in the gastroenterology department. She was in an entirely different wing!

We followed the signs for the Cancer Center. That wing of the building overlooks a pond that rests just across the road. There were geese rummaging through the grass, heedless of the cars that occasionally rumbled past. The water reflected the damp towel clouds above.

After checking in and the usual formalities, we were escorted into an exam room with two chairs, an exam table, and a low-droning machine with a monitor in the corner. The nurse checked my weight and vitals and handed me an enema in a box. I had never done this before, but I dutifully took the bottle with me to the bathroom and did the deed. Walking back to the room, Mom smiled up at me encouragingly and squeezed my hand. I sat next to her and waited; waiting usually involves a lot of crossing and uncrossing my legs so that I can cross them the other way, slouching and then sitting up straight, bouncing my leg, resting my elbows on my knees so my hands can prop up my chin, finger wiggling, and a lot of sighs that imply more contemplation than impatience. If there is one thing my mother taught me especially well, it is the art of patience. Luckily, we didn't have to wait long.

Due to my lateness, the doctor was ready for us not long after I came back from the bathroom. She and her assistant instructed me to pull my pants down past my knees and lay on the exam table, knees tucked up to my chest. She put on gloves and probed my rectum with a scope. She was looking for tumors, but, thankfully, all she found were polyps. She found a lot of them, all different sizes and pink, like the inside of a cheek. (You might remark that this is, sort of, the inside of a cheek, and you would be right.)

If you are wondering why I needed a rectal exam, (I am certain you are) I have Familial Adenomatous Polyposis (FAP), which is a hereditary disorder that occurs from a change or deletion of the fifth chromosome. It means that I may develop hundreds to thousands of adenomatous polyps, a kind of polyp that can become cancerous. I am also at a slightly higher risk of other cancers, such as thyroid or stomach cancers.

When the doctor was done with my exam, she helped me up and allowed me time to put myself together before beckoning me into the consultation room across the hall. When we were all seated, she explained what needed to happen to reduce my chances of cancer. My whole colon will need to be removed, and the small intestine will be fashioned into a reservoir called a J-Pouch, which will function similarly to my rectum. Since my colonoscopy isn't until next month, we are waiting until the results come in before we discuss things further. If everything goes as planned, I can have my colon removed as soon as the middle of October.

If you are wondering what I think of it all, then I will just say that I intend to rely on the wisdom of my surgeon. Logically, I know what must be done. Emotionally, my mind has not caught up yet, and it may be some days before I finally see an emotional reaction. I looked at myself in the mirror and imagined myself with a stoma bag and a scar, yet it all seems too surreal to fully put into picture. All I can hope for is that I can rely on my family and friends during all of this because I am scared. I can't feel it yet, but I am.

Thank you for reading this really long and detailed ramble. I hope your day is as beautiful as you are.

Love,

CW: I’m going to be talking about despair associated with chronic illness. Death mention.

Here are the major available IBD treatment options, listed in the roughly the order I’ve taken them (or for the ones I haven’t yet taken, the order in which I expect to try them).

So I’m about to state a fact that might be obvious, but tbh I have no idea if people who aren’t chronically ill (or close to someone who is) understand this at all; I certainly didn’t when I first got sick, but I was also 14 years old, so.

Treatments for chronic conditions often don’t work. Or they work for a little while and then stop working. And there are only so many options out there.

Sometimes patients have to try a lot of drugs to find one that works, only to have it stop working shortly after. Sometimes patients try them all and nothing works.

The literal thought that went through my brain upon receiving my diagnosis at 14 was “now the doctors know what it is, so they know what pills will make it go away.” lolsob. I was not ready for what was about to happen. No one is, though, I guess.

I have exhausted roughly half of my options as you can see above. So I’ve had this condition for 14 years, half of my options are gone, almost all of them only worked for a very short time, I’m 28 years old, you do the math. People like me spend a lot of time staring into the abyss, counting the number of treatments still left, and just kind of hoping that we exhaust them slower than new ones get discovered and tested (and the drug discovery pipeline operates really fucking slowly).

For people who exhaust all of their options, the only choices from there are to try experimental drugs (i.e. clinical trials), which are even less likely to be effective and in some cases may not even be safe, or to just live with our illness unchecked, which for many of us is straight torture and/or not survivable.

I don’t know how to calibrate how afraid I should be. I had flare-ups as a teenager that literally almost killed me, and so when I think about running out of treatment options, that’s what I imagine my life becoming. But there’s a pretty fundamental physical difference between me now and me then, which is that I am now missing the organ that gave me all my worst problems, so....?

My diagnosis now being Crohn’s does mean that my small intestine could choose to start being a brat at any moment, but historically it hasn’t done that and I have no reason to believe it will start. I sure hope not, because one cannot simply ditch their small bowel.

Anyway, it’s just over a week until my surgery and I’m starting to feel a little nervous. I guess that’s normal given that it’s a pretty major surgery and they’re not 100% sure of the outcome given that if the blood vessels won’t reach, they can’t form a working j-pouch. I’m sure everything will be fine; I’m going to the best hospital for IBD/gastro-related treatments in the south of England so I know I’ll be in good hands. I’ll be sure to post closer to the time as this is essentially my diary, only it’s public.

So, today marks 1 year since getting my stoma. It’s had it’s ups and downs, but overall it’s been the best year I’ve had for a long time.

The biggest thing I’ve had to get used to is eating like a normal person again; although I am currently keeping to a (mostly) gluten-free and reduced dairy diet, I’m still learning what foods are good and what ones are still bad. Most of the bad ones consist of foods I couldn’t eat before (such as certain fruits and vegetables) but there are some new ones (like nuts and popcorn). Still, it beats living on instant noodles, plain crisps and gluten-free cereal.

Getting back to a normal sleep pattern hasn’t been hard at all; it seems I wasn’t sleeping anywhere near enough before so I’m able to sleep fine now. Other things like doing housework and being able to go out for the day are still a little bit difficult due to a lack of energy, but I have less concern about bathroom location now whenever I leave my flat.

Another thing I’ve had some trouble with is exercise; I was warned not to over stretch or lift anything heavier than a kettle for the first 6 weeks. Because I was practically bound to my room at the hospital for three weeks, my leg muscles had deteriorated quite a bit so I had to work up to walking longer distances slowly. This also meant I couldn’t exercise much at all. After a few months, my legs were almost back to their original size and strength and my stoma nurse said I was ready to start some gentle stomach exercises. She gave me a booklet that outlined ways to strengthen my abdominal muscles in order to avoid hernias. I had a bit of a false start due to some liver problems, but I started going to the gym not too long ago and it feels good to be able to get back into a routine again.

There’s a whole huge social factor to having Crohn’s disease that I haven’t even touched on yet: stigma.

Crohn’s is a gross disease. It’s a poop disease. There’s an embarrassing component to it that you don’t get with other illnesses like, say, diabetes or lupus. I feel it’s especially hard to deal with as a woman, as you’ll see later in this post.

I was diagnosed with ulcerative colitis at the beginning of high school. I learned the ropes of the disease while in the relatively comfortable setting of being with family and friends who had already known me for years. Everyone was accepting because they already loved me. The gross factor wasn’t too big of a deal for me back then - it was so eclipsed by how hard I had to fight just to stay alive during those years.

Things got hard when I tried to go to college for the first time. I had a roommate (she was a totally sweet and wonderful person, but sharing a room at all was hard with this condition). Worst was that the bathroom was for the whole floor, 20-some women. I didn’t know anyone at my college and was desperate to make friends. But I was intimidated by the fact that many of the women on my floor seemed to have very....dramatic?....reactions to anything considered gross. I remember there being this huge controversy over someone finding a piece of chewed gum stuck to the wall in the shower-area, which, yeah, is gross and disrespectful, but the enormous reaction to it just made me wonder how people would react if they knew they were sharing their bathroom with someone who was having bloody diarrhea 6 times a day.

There was another time where, immediately after showering, I needed the bathroom urgently, so I wrapped up in my towel and walked from the shower area to the bathroom stalls. I dripped some water on the tile floor during the walk, since I hadn’t had time to dry off properly. Some minutes later, I heard one of the women screaming about how someone had pissed all over the bathroom floor. I just hid in my room. If this kind of thing was enough to cause controversy, I knew they’d be horrified by the truth of what I was.

For this reason, I felt the need to stay entirely “closeted” about my condition, except with my roommate who I told before she even agreed to be my roommate, because it wouldn’t have been fair to her otherwise.

The worst thing about this is that I learned, YEARS later, that one of the students overseeing my dorm floor (not exactly the RA, but a similar position specific to my college) also had ulcerative colitis. I cried the night I found out, because just imagine how beneficial it would have been for me back then to confide in a friend who understood what I was going through. I could have had that, if I had been in an environment where I felt free to be open about what I was and what I was going through.

Well, I was too sick to continue with college after only 7 weeks, so I got out of that environment. I went home and had my surgeries. It should be noted here that stigma was a factor in the surgery I chose to have. At the time, my diagnosis was ulcerative colitis; it wasn’t updated to Crohn’s disease until after my surgeries. This is important because ulcerative colitis has more surgical options because the disease is limited to the colon, and the small intestine is usually considered healthy. You can get your colon removed and have a permanent ileostomy (you may be more familiar with the term colostomy - similar deal). This is the simplest and safest option and can be completed in one procedure. But UC patients also have an option that lets them keep their shit inside their body, called a j-pouch. The surgeon forms a new reservoir out of the tissues of the small intestine that serves the same purpose the colon used to serve. This is a relatively new procedure (around since the 1980′s) and takes 2 or 3 surgeries (3 for me). I chose this because I was a 19 year old girl and to be honest I couldn’t cope with the idea of having an ostomy bag for the rest of my life. I thought about trying to have romances with healthy college men while having a bag of shit hanging from my belly, and it didn’t look plausible. I thought I’d be considered a freak and be alone for the rest of my life, and so I opted for a riskier and more involved surgery so I could keep my body image in tact.

Can you tell by my tone here that I regret this?

My diagnosis ended up being changed to Crohn’s after surgery, and j-pouch isn’t even an option that doctors present to Crohn’s patients because the disease is present in the small intestine too. But I still have my j-pouch because nothing has happened, YET, to necessitate its removal. It will almost certainly happen at some point, which will mean more surgery, and it will also mean that I will be without a couple feet of my small intestine (the bit that was used to make the j-pouch, which will have to be thrown out) that I could have kept if I’d just gone for an ostomy the first time around. This will mean that my digestion will be worse, I’ll be more prone to dehydration, in more danger of short-gut syndrome, my ostomy output will be runnier and more prone to leaks, than if I had just opted for ostomy in the first place. Meanwhile, I’m on antibiotics 24/7/365 because they help my j-pouch be less bratty, and that’s not exactly the safest thing either.

I’m not saying that any of this is anyone’s fault other than my own. I made my decisions and I live with them. Nobody forced me to weigh social acceptance so heavily when I made my decisions. But in a world where social acceptance for gross stuff or body differences were better, it would be easier for people to make the decisions that are actually optimal for their health.

(Hey, by the way, if you happen to be a UC patient reading this - I’m not discouraging you to try j-pouch if you want to. My level of misfortune here is pretty uncommon - j-pouch ends up working well for like 92% of UC patients. It’s reasonable to be scared of/not want an ostomy.)