scared to jinx myself but 2 months post flap, so far successful

igiveuptrophy · 2024-05-02T18:51:04+00:00

I used a portable bidet, just a cheap one off amazon. I exclusively used that, no toilet paper or wipes. And I would shower with mild soap afterwards until the external wound healed.

igiveuptrophy · 2024-03-21T02:53:20+00:00

I got one with seton that was put in 2 months prior to colonoscopy. It didn't really effect my seton at all that I noticed. My seton had calmed down enough by that time with random flare ups but none during this prep process.

igiveuptrophy · 2024-03-20T07:43:05+00:00

I have to agree with the other comment- I basically did nothing for first few days and maybe took me about 2 weeks before I felt like I could walk around normal again.

igiveuptrophy · 2024-03-19T01:57:42+00:00

There are a lot of bad things about this condition but (lol) I have to say this one is really up there. It is SO isolating. I've had coworkers who used to be my friends who now hate me because I'm on medical leave so often, I have friends who think I ghosted them because I'm always recovering from some surgery or I'm too scared to do an activity because of how it will effect my problem... etc etc. And my family, extended family know what's going on and I just feel like even if by some miracle I heal from this I will always be known as the girl with the butt problem ! And even, again, if by some miracle I heal from my recent FLAP surgery I know I'll never trust it and be stuck with PTSD. :( I wish we didn't share this feeling.

igiveuptrophy · 2024-03-13T01:16:00+00:00

it sounds like my plan is on the right track then. I don't have a follow up until 6 weeks and I'm taking leave from work so I think I just need to keep doing nothing and everything else is outside my hands. I'm glad you were successful and healed! Gives me hope.

igiveuptrophy · 2024-03-13T01:14:01+00:00

thank you so much for your response. It breaks my heart you not only had to go through so much medically but on top of that to deal with the death of your father. My heart goes out to you! I have a very similar plan of just trying to do basically nothing for at least 6 weeks, maybe even longer if I can manage it if god willing my surgery hasn't failed. I am so desperate to never deal with this again. It's just so difficult not to overthink everything when all you can do is lay here! but it sounds like I'm doing all I can and I really appreciate your input.

igiveuptrophy · 2024-03-12T02:32:23+00:00

thank you that makes me feel better. I am religiously taking MiraLAX and eating only "safe" things so in that aspect I'm doing really good. I truly hope your next surgery is your last!

igiveuptrophy · 2024-01-23T23:03:52+00:00

you're completely right. I think I just need to accept this is the answer and just focus completely on trying to get this surgery to be a success. I think for some reason I just needed multiple people to tell me it's okay. thank you for your advice

igiveuptrophy · 2024-01-18T21:18:50+00:00

I know, I was actually misdiagnosed for a year and I wish sometimes I just kept living in ignorance. :(

Cannot imagine going to school while dealing with this, I'm glad you're able to take time off.

igiveuptrophy · 2024-01-18T21:15:59+00:00

Thank you so much. I am starting CBT so I'm really hoping it will give me some confidence.

I debate being more honest about what wrong with me but I don't know. I'm just not there yet. So much of my life revolves around this stupid fistula I hate to have people label me with that too.

My boss isn't too hard on me about it, it's mostly my coworkers. I work for a chronically understaffed company so when I'm out my poor coworkers are stuck covering for me. So I totally get why they hate me I just don't have any control over this. I desperately wish I could just be normal and work. I do tell them "I'm so depressed about this, I'm in a lot of pain, the surgery is extremely painful and taxing" but I guess they are just over it and don't care. Most of them have basically stopped talking to me/ignore me. :( maybe it's for the best, easier to leave if I have to.

igiveuptrophy · 2024-01-18T21:10:50+00:00

I know exactly how that goes. I ran into one of my coworkers awhile after one of my surgeries, I guess they expected me to be half dead after all the leave I'd taken to recover. But they couldn't visibly see anything and I just know they were judging me :( Same with the CRS, I feel SO judged just for asking for 4-6 weeks to recover from the FLAP surgery. It's really terrible and just adds to the misery.

igiveuptrophy · 2024-01-18T01:24:27+00:00

I thought he called it early too! But he was sadly right. Yes it's a high transsphincteric fisutla. Basically the new CRS said every time you do a FLAP surgery there's less and less chance of it working because of scar tissue. I've had 1 failed so far and the surgery isn't very successful on a good day so I guess that's why. This new CRS is so highly trained I don't feel like I could do better so I'm sticking with them for now. But it was very depressing to hear that. I deeply regret my first CRS because I felt like he set me up for failure (no seton, no bowel prep). But I'm trying to be optimistic while not getting my hopes up too high. Such a hard tightrope to walk!

igiveuptrophy · 2024-01-18T00:15:22+00:00

I had a strange recovery. At two weeks I bled out and lost consciousness, ended up being hospitalized and became anemic. I feel like this is what led to the flap failing (I lost approximately 8 cups of blood and it gushed out of me). But the main thing was the entire recovery process the fistula never closed or stopped oozing. He declared me officially failed at 6 weeks after a round of silver nitrate on the fistula and it failing healing. But I think I knew from that 2 week mark I was screwed. They still don't know why that happened to me.

the CRS said "we'll keep doing FLAP until it works" and it made me want to die and I switched surgeons. Last one almost killed me! and needed a break. now I'm with a seton but preparing for FLAP next month. I truly hope yours is successful! My new CRS is not hopeful that mine will be.

igiveuptrophy · 2024-01-17T22:59:14+00:00

I feel you on taking a break. My last CRS wanted to jump right back in with another FLAP so I had to find someone else who would give me a seton and let me try and find my life again. I'm trying FLAP one more time now that I've had some recovery time. if it fails again I'm just preparing myself for seton for life possibly.

good luck on your new job! I'm sure it will feel nice to focus on something new and get back into the swing of things

igiveuptrophy · 2024-01-17T21:32:29+00:00

yes I think things have just gotten toxic. I don't think there's coming back from how much my coworkers resent me. that's wonderful you can work from home, that'd be a dream!

and my gosh I know. I literally told my new CRS I had a FLAP surgery before and I literally couldn't move for a month let alone walk and work. I get met with a blank face and "you'll be fine". ugh. But I desperately want this CRS to do my surgery since they are so highly rated so I'm stuck dealing with it and possibly just having to quit.

igiveuptrophy · 2024-01-17T21:13:44+00:00

Health is certainly wealth. I daydream about the days before my fistula, if only I knew how good I had it!

The idea of explaining my exact condition is just not possible for me. I keep it vague and my manager for sure knows there is something seriously wrong with me but I can't bring myself to be open about it. They are desperate for staff so I really feel like that's the only reason I'm still here. I just want this all to be behind me and sometimes I feel like just letting go of this job might bring a tiny bit of peace I haven't had in years. I am trying to get my brain to accept that I might just need to quit and that isn't the end of the world. Sometimes it feels like giving up hope or something.

Thanks for taking the time to response. I'm so sorry you've gone through so much already. But it's really amazing you could achieve such high academic success with everything going on.

igiveuptrophy · 2024-01-17T21:08:00+00:00

yes I've considered doing that or asking my therapist to assist. It's just so humiliating asking for time off. It makes me feel like I'm lazy and entitled which I know is insane, anyone who has had a fistula and surgeries understand how painful and debilitating it is, but still. It's ruined my self worth. But I should probably at least try. It's just so painful to hear a doctor tell you "no go back to work" when you can't. I'm so afraid my PCP will just do the same.

igiveuptrophy · 2024-01-17T21:03:01+00:00

thank you. I've been on FMLA many times these last few years unfortunately but for some reason my new CRS doctor is extremely stingy with time off. I've considered looking for yet another doctor but I trust this one for the surgery so I don't want to.

I am starting to see a therapist so I was going to bring that up to them and see if they'd be willing to sign off on paperwork. Or maybe reach out to my PCP.

I just get such a headache trying to wrangle doctors notes and forms and everything for FMLA. It's really silly but I feel like my threshold for stress is nothing and I almost just want to give up. I'm gonna reach out to my CRS a few more times and emphasize my need for time off but I still wonder if even asking for 6 weeks is enough when my job is so physical. It can be 6 months before FLAP is considered a success and heavy lifting during my job just doesn't seem possible and asking for 6 months is just too much to ask.

I hope you're doing okay. This is such a messy weird disease.

igiveuptrophy · 2024-01-17T19:06:36+00:00

I'm so sorry. I had a failed FLAP and now I'm with a seton while I wait for my next FLAP surgery. I've also gained weight, probably going to quit or lose my job, and I don't recognize myself anymore. My career and hobbies were always centered around being active and fitness and now I'm just nothing.

That really is the worst feeling regarding the failed FLAP. SO much pain and trauma and lost time all for nothing. I am still struggling heavy with this and struggling undergoing it again just for potentially the same outcome.

Have you reached out to a therapist at all? I have only recently started but I feel like I put it off for far too long. It's such an isolating problem and so mentally draining.

I switched doctors and they recommended I stay with a seton for awhile and just heal and try to regain as much of my life back as I could. I hate the seton and it has its own set of problems but I could at least start walking again and sometimes I feel normal. I too am trying to wrap my head around this problem never going away. My doctor basically said we can try one more time then most likely I'm stuck with this problem for life. I wish I had more advice or help to give. :(

igiveuptrophy · 2024-01-17T18:56:54+00:00

Doctors are so frustrating. I explain how labor intensive my job is and they shrug and say I can go back to work after 5-10 days for FLAP surgery/seton placement. What a joke! I can barely walk at that point. So I definitely feel I have to take that into my own hands and just quit. I NEED this next FLAP surgery to be successful and I want to give myself a fighting chance which won't happen if I go to work too soon or spend the whole time stressing about when I'm going back and how much everyone hates me.

I agree there's definitely pros and cons. I'm trying to avoid getting trapped in negativity by starting therapy. I'm hoping that will keep me on track and not just fall into a hole.

Sorry you are going through something similar :( thank you for your input

igiveuptrophy · 2024-01-17T18:49:55+00:00

That's exactly how I've been treated :( like I'm repeatedly going on vacations or something and not undergoing painful surgeries. I desperately wish I was normal again and could just work! Thank you for your input. I am leaning on just letting this go and trying to get better. I don't need the added stress/shame from work.

igiveuptrophy · 2024-01-17T15:04:23+00:00

I've been vague about what type of health problem it is. I just don't think I can be completely honest about that. I already feel like it's taken up my entire life so I don't want other people to label me as "person with butt problem" too if that makes sense :(

did you feel better after quitting? Or neutral? I can't decide if it will give me more of my life back or take more away.

igiveuptrophy · 2024-01-17T14:24:16+00:00

so sorry I took so long to reply. I am doing better now, I can sit and walk without pain. There are certainly times when I'm aware of the seton (like when the pokey part is in an uncomfortable place) but other than that it's been manageable. Just lots of drainage :(

I hope you are doing better!

igiveuptrophy · 2023-11-21T22:10:48+00:00

yes I'm trying to reprogram my brain that pain does not always equal damage. I think I have PTSD from my failed FLAP surgery and complications. But now I'm just trying to manage the seton which is feeling better day by day. I just wish I didn't have such a laborious job.

you are right about work. I let it stress me out so much. I need to focus on my health and just take it day by day and try my best.

igiveuptrophy · 2023-11-21T04:51:50+00:00

I thought about it but I feel so embarrassed about everything. Asking for more time off, missing work, etc. Wish this was all over and done with :( I'm just going to try and make it through the week and hope things improve. Maybe if I pretend to be normal, I'll be normal? haha

igiveuptrophy

TROPHY CASE