So I have been trying to not be as vocal about how I am feeling because I don’t people to think that I am a baby or a complainer. Facebook is such a weird space when you think about it because people are either going to use it to talk smack about something or use it to only show the best of their lives. There is really no true truth on facebook and yet we tend to formulate opinions about people based on their posts.
So with that said, I recently posted a #worldostomyday photo with a caption that I have been (heavily) considering going back to an ileostomy permanently. I was very vocal about my disease when I first got sick and for some of you it was like reading a daily soap. My struggles were real and it brought a lot of awareness to folks that had no idea what Ulcerative Colitis was. Then I flooded your feed with everything about surgery- the decision process, the actual surgery, and the recovery process- for not one but two of them. Some of you probably hated me and some of you were okay with all of the depressing updates.
It has been 2 years since my first surgery and 1 yr 9 months since the second surgery. Let me explain in detail what happened. The first surgery they removed the whole colon, created a “j” shaped pouch using my small intestine, and I had a poo bag (ileostomy) on my belly for 3 months to allow for the new plumbing system to heal. Things were good. I dealt with the bag, was fine, felt great. In January 2014, the second surgery, they pushed the stoma from my belly back in and I started using my new “jpouch” plumbing system. This meant going back to pooping out of my butt like a normal person. Except- it’s a little bit hard to except that I am no longer normal. So the first three or so months of that was HORRIBLE!! I was pooping my pants multiple times a day. I couldn’t be away from a bathroom. I had to really limit what I ate. Things have since gotten better. But that’s where it gets tricky. What is better?
For the past year I have been dealing with the nasty colitis in my rectum. See when they formed the j-pouch they kept a small piece of the rectum to form a tunnel of sorts. This is to help reduce incontinence. Since the rectum is a part of the large bowel and part of the area that gets diseased by colitis, wouldn’t you know that would happen to me. So while, I am not sick in bed like I was when my entire colon was diseased, I am and have been dealing with tons of other issues. This is where the stress kicks in because every decision I make is based on subjective data. This makes this next decision just as tough as deciding to go through with the first surgery, if not harder.
So with having cuffitis (colitis in the rectal cuff), I have good days and I have bad. I have averaged it to about 50% of my month is no good. Let me explain what happens when it’s a no good day:
- I am pooping 10+ times a day (average on a normal day is 5-7)
- It feels like I am pooping razors
- I am overly gassy, regardless of what I eat
- my joints hurt
- I get stomach pains regardless of what I eat
- I am tired all day long
So here’s why I am considering going back to the ileostomy.
- When I need to pass gas, I have to lie down on my side. Now picture me out living my life (which i have been) and having to constantly pass gas. Now picture having to do that in a public bathroom. Now picture that in a SF or Oakland public bathroom. Now imagine how you would feel after you had to lay on a dirty, probably smelling like pee, floor to pass gas. And if I don’t the gas pain take a toll on stomach pain.
- Well, some have argued, why don’t you just change your diet? How about you give up a) the things the make you gassy, b) give up gluten and dairy, and c) give up (fill in the blank). I have tried that. While I have not been 100% with being gluten free, I have cut back considerably. When I first got sick, I cut out all dairy, grains, and sugars. And while I felt good, I missed food. And not just Texas food or fried food, but I was miserably socially because I couldn’t eat anything. Also- I can’t eat raw veggies. They have to be cooked and even not all cooked veggies sit well. So yes, I can go gluten free or paleo, or this or that, but think about the last time you tried to go on a diet. How successful were you at sticking to it for more than a month?
- With the cuffitis, I am having to put something (a suppository) in my butt (sorry for the graphic wording) twice a day. I am just a little bit over sticking something up my butt twice a day- just a little.
- Constantly tired. I mean this I can deal with for a while. It sucks when it comes to wanting to work out because I need 2 days to recover from any workout. I can maybe 2 days in a row and then I need 2 days to rest. I mean what quality of life does one have with always being tired?
So this is where its so confusing and the decision is not so black and white. This is 50% of my life. Not 100%, not 25%. I have a good week, then a bad week, then a good one, then a bad one. Since its all quality and quality can’t be measured in quantifiable numbers, how do you then decide? How do you know? I mean I can keep going as is, but I am missing out on feeling better? Am I not worth it enough to try to access a higher quality of life? Or I can say fuck it lets do the surgery- and then there’s always the risks that come along with that. I mean please don't get me wrong, I am very grateful for how far I have come. I am grateful for not being sick in bed all day anymore. I am grateful for being able to attend music festivals and eat more of a variety of foods.
I just don’t know what the fudge to do. I have scheduled the surgery for November 13, 2015 (which is not cemented in stone), but my gut is telling me that it is okay to want to go back to the bag. My first instinct is to have the surgery-- but I constantly doubt and question myself. It’s crazy how I can immediately feel guilty for wanting to feel better, or how mad at myself for feeling like I am giving up or like I am not doing enough.
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