Long time lurker and first time poster. I have learned so much from this community since I’ve joined and have had so many of my thoughts validated. So I am hoping that I can share the precipice I find myself on.
I am at a crossroads between getting revision surgery or getting a permanent ileostomy. I was hoping to connect with other members, particularly those with a cancer background, that have already made this decision and/or are currently weighing these options.
If you’re still reading, I feel it’s best to share my history and journey so you can have the a comprehensive picture of my situation. I’m going to use bullets to highlight my medical and surgical history.
- diagnosed at age 12 in 2000 with ulcerative colitis. Was only really bad for a few years and by age 18/19, I no longer was taking meds. I guess you could say I was in remission because other than having to using the bathroom 1-2 times a day, I totally forgot I had UC.
- Flash-forward to 2021, I just had my first Covid vaccine, and I noticed that I was using the bathroom a little more than normal. I brushed it off, because I just figured it was a vaccine side effect. Get my second shot, still using the bathroom more than normal. I told myself I’d give it a couple more months and see if things calmed down - they didn’t.
- June 2021 (age 34) I got a colonoscopy and my gastro said he saw cancer. Was sent for genetic testing - positive for Lynch Syndrome MLH1. MRI shows two tumors, one in colon and one in rectum.
- July 2021 switch over care from local hospital to MSK (Memorial Sloan Kettering Cancer Center) - start immuniotherapy, go a few rounds until it flares my UC.
- November 2021 rectal tumor is gone and colon tumor shrunk and now we can have surgery. The plan is to take my colon and rectum and create a Jpouch.
- December 2021 Total proctocolectomy with diverting ileostomy and Hysterectomy/Bilateral Salpingo-Oophorectomy (my type of Lynch has a high risk for ovarian and endometrial cancers as well). Unfortunately during surgery my small intestines were badly twisted and my surgeon was unable to bring them down with enough length to create a jpouch and I have what is called a straight ileoanal anastomosis.
- March 2022 ileostomy is reversed and I begin to learn how to function with my new anatomy. With a straight ileoanal anastomosis your body creates its own internal pouch. While it’s not a large as a jpouch, the literature and research say that someone in my boat should have the same recovery and expected outcome as a jpouch.
- Initially in my recovery I was making good strides, average of BMs per day were trending downwards each month and I was learning what foods worked and what foods didn’t. While the reasoning behind what worked and what didn’t never quite made sense, I always listened to my body.
- While my pouch continued to grow (as seen on the MR scans), I however stopped improving, around the 1-1.5 year mark. My average BMs per day slowly started trending upwards. I’ll elaborate more on my QOL later.
- Flex sigs and mr/ct scans continued to show a healthy, problem free pouch.
- January 2024 pathology report of random samples taken during a flex sig shows some low grade dysplasia in the anal transition zone. My surgeon isn’t all too worried about it, says it needs to come out but nothing to be alarmed about.
I pause my medical history to transition into my QOL. If you’re still reading, thank you. I’m getting closer to tying this all up. Back to bullets.
- Inconsistent and unpredictable are the words I usually use to describe my days.
- Once things calmed down after the first few months post ileostomy reversal when I was improving every month, I was using the bathroom 5-8 times a day. Recently, the past 6+ months or so, my average is like 8-11 times a day.
- Something that has always remained the same this whole journey is how long it takes for me to use the bathroom. Each trip is a minimum of 20 minutes. I’ve had times where I literally can’t stop going for 60 minutes straight! During a typical 20 minute trip, there is the initial expulsion, a few minute break, more coming out, break, more coming out and so on. Yes, I have a squatty potty. No, I do not have a bidet. Yes, I move around in different positions to help aid evacuation. Yes, sometimes I get up and walk around. Yes, my stool is formed.
- Once that initial 20 or so minutes is up, often enough, I’m right back to the bathroom 10-40 minutes later to keep going - the fun just doesn’t want to stop!
- Mornings and evenings are the worst time of day for me and doesn’t matter what time I have lunch or dinner (I don’t eat breakfast). It’s difficult to get ready and get to work on time. Doesn’t matter if I’m up a whole hour before I actually need to get up, chances are, I’m stuck on the toilet trying to get ready and out the door. For the most part, afternoons are where I’m able to get my freedom, my most normal parts of the day. A few hours of a break. This is when I get to be a regular person again. Flash forward to supper time and the fun begins again. A lot of nights are spent running back and forth to the bathroom as I cook. I think you can guess how overnights are…. Up every few hours. A good night is only getting up 1/2 times - and other nights, it’s 3+ times. Needless to say, my bathroom habits make it hard to socialize in the evening hours.
- Since I brought up food a few times, I do keep a diary of what I eat and eliminate what bothers me. I have tried to reintroduce things over time and they either work or they don’t. Some things I used to eat with no issue, bother me now. There’s really no rhyme or reason to any of it. I eat two meals a day and I do not snack in between. That is what works best for me - ironic words because clearly it doesn’t. But the few times I’ve strayed from my routine, it didn’t end well for me. It’s funny because I can eat the same meal let’s say 5 times, and at least 2 of those times it’s going to have a complete different outcome than the other times. I won’t go into specifics of what I can/can’t eat because it’s different for everybody.
- Things to note, throughout this journey there have been many days where I’ve only gone to the bathroom 4/6 times, so I know my body is capable of it. I didn’t do anything special or unique on those days. I eat the same few things in rotation - very simple, basic meals. There are days where I can go 9-13 hours without having to use the bathroom and then there are days where I’m using the bathroom 6 times in 4 hours. You just never know what you’re going to get! A good start to the day doesn’t mean the whole day will stay like that and a bad start to the day can turn around by the afternoon or stay crummy throughout.
- Overall, I’m very dissatisfied with my QOL. I feel very imprisoned by it all. Of course I’m grateful to be alive and I try to make the best of my good days but I do feel like a lot of my freedoms were taken away from me. I really live a shell of an existence and something has to change. I don’t know how I could ever go out and get a different job (not that I want to right now because my job and my boss are amazing and supportive). But I think, How would a new employer that doesn’t know me and my work ethic deal with 2-3 bathroom trips lasting at least 20 minutes in the course of the work day, some being back to back! As I mentioned, I have an almost non-existent social life, I don’t even know how I would even be able to meet someone, and date them when most nights I can’t even enjoy dinner without a few bathroom trips. (Obviously I know with the right person that won’t matter but first I gotta meet the guy lol). Dating is low on the list right now of things I want in life, but it’s something I’d like to do in the future.
The last few months I’ve been discussing my QOL with my surgeon and gastro and they both believe at this point in my recovery, that this is the best it’s going to get for me and the next step is surgical intervention, especially after the dysplasia finding. We have tried various medicines to no prevail.
- I’ve been on tincture of opium this whole time.
- I have tried lomotil and immodium. They really did nothing for me.
- I tried Citrucel caplets for almost a year. No major difference.
- I’m currently doing Metamucil Berry. I’m very sensitive to taste and if I have to take something multiple times I day, I need to be able to tolerate it. I really like the berry favor and I do well with sugar in moderation. Unfortunately, using Metamucil is not life changing for me. Yes, it does make a difference in the quality of my stool, but not enough to make an overall impact to my life.
- I know many preach the benefits of single ingredient psyllium husk but I can’t find one that doesn’t sound absolutely disgusting. I researched and found less chemically filled Bellway, but that didn’t work for me either.
- My body is sooooo sensitive to the fiber. Too much and I feel very “constipated” and will struggle and use the bathroom more often. It’s really been difficult with lots of trial and error to find a dose of Metamucil that “works” for me.
My surgeon discussed my case with both Jeffrey Milsom and Feza Remzi, who both agree that my next steps are surgery - Either a pouch revision or permanent ileostomy. I went into the city to see Dr. Milsom about 2 weeks ago and he scoped me - everything looks great. Said I was a candidate for either surgery and agreed that he didn’t see me getting any better. He recommended I try two more things before I go the surgery route 1) Levsin, which I’m using now and see no signs of improvement and 2) Fibercon, which I plan on making a separate post to inquire about.
So, as you see, I’m at a crossroads.
If I go the pouch revision route - it would either be a one or two step surgery but we wouldn’t know that until they go in there and assess how much scar tissue there is. Obviously two step would require a temporary ostomy for 3 or so months. I feel like this surgical path is starting over and the last 2.5 years have been for nothing. I don’t know if I want to do that all again. While there are many that live wonderful lives with their pouches and have great results, there’s the risk that I can end up right back where I started. Of course if that happens, I can opt to get the permanent ileostomy but at that point I would have wasted so many years of my life (my youth) to this crap! I don’t know if I want to lose any more time to dealing with this, especially with the risk of not having positive outcome. No doctor has made a compelling enough argument for this path to sway me towards it.
If I go the permanent ileostomy route - well it’s permanent and that concept is scary. I’m not afraid to have an ileostomy though. I’d manage and figure it out. When I had my temporary one, I of course hated it because I had the worst rash. But back then I didn’t even realize that there were products out there other than what I came home from the hospital with. I’m more knowledgeable now and I’d figure out a system that worked for me. It would take a lot of getting used to, but I feel like I’d get so much of my life back - something all my doctors have noted as well. Think of what I can do with the hours I’ll have back that were previously spent sitting on the toilet 8-11 times a day!
I’m hoping that someone is still here reading this that has maybe been through this decision and can shed light on their life now or maybe someone in the same boat as me, weighing their options. I feel both options suck and I need to pick the least sucky option. Any words of encouragement would be greatly appreciated!
Thank you in advance for your time and help 🩷
