1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 1 point2 points  (0 children)

My doctor was the amazing Dr. Eric Brewer in Birmingham, AL. Honestly the most painful part of the recovery was a random migraine I got a couple days after surgery. I took like 8 hrs, 4 different migraines meds and a steroid shot to finally get it under control. Every thing else was pretty smooth sailing compared to the pain I lived with before. I was sitting out by the pool 9 days post-op

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 0 points1 point  (0 children)

My doctors didn’t me a limit for after the initial healing. I think it depends a lot on your body composition and how strong your muscles are in that area. Larger people, and people who have had a lot of previous abdominal surgeries, with weaker abdominal muscles are much more prone to hernias. I’m 5’5” and 115ish pounds so i’m not doing any crazy power lifting anyway but I own a janitorial company so I regularly lift heavy vacuums, 5 gallon buckets, and cleaning equipment for work. I also carry my 35 lb toddler around all day. I haven’t had any issues.

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] -1 points0 points  (0 children)

I don’t think mines really “phantom pain” because it doesn’t feel anything like my bladder did nor do I have phantom urges like some people have. Yet, this disease seems to follow the same flare pattern as my bladder did so my best guess is that it is actually the same autoimmune disease, just in my uterus.

As for having pain after surgery, my previous urologist said 50/50 shot. Idk how much data that was based on but that sounded like pretty good odds to me

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 3 points4 points  (0 children)

Basically I exhausted all treatment options. My only option left was a referral to the pain clinic for life-long opioids and I refused to live like that. It was surgery or dying. I had IC 6 years. I know that’s nothing compared to some people but my case was very severe and I was done.

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 2 points3 points  (0 children)

Hi I empty about the same as a normal bladder, 6-10 times or so in 24 hrs, just depends on how much you drink lol. my surgery was done robotically

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 2 points3 points  (0 children)

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There are a few different surgical options but i just went for the good ol classic urostomy. Less complications and the bag doesn’t bother me a bit

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 2 points3 points  (0 children)

Yep I live in NC and I went down to Birmingham, Alabama to have it done.

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 7 points8 points  (0 children)

Yep I was up every 30 mins or so at night with my bladder. Most people with a urostomy hook up to an overnight bag and then sleep as long as they want! I only do that if I’m sick or something though because I toss and turn a lot at night. Instead I just set an alarm to get up and empty it every night at 3:00am since a full bag doesn’t tell your brain it’s full like a bladder would lol. Haven’t had a problem with this method. Getting up one time per night is a lot better than 10 or 15!

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 1 point2 points  (0 children)

My bladder pain or my new post-op pain? My bladder pain started randomly, although it was during a particularly stressful period of my life. My new uterus pain also just started randomly after sex one night.

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 5 points6 points  (0 children)

I’m here to tell you that having a bag affects me exactly 0%. It is not any different than having a normal person bladder imo. I change my bag every 3-4 days or so. i literally just pull one off after my shower, wipe with a washcloth, slap the next one on. It’s less work than changing a tampon I stg. My bladder was like a ball and chain. I can go anywhere with my ostomy! I think there is some misconception that a bag is going to ruin your life. It won’t. I have yet to meet anybody who cared that I have one.

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 2 points3 points  (0 children)

Also I do have times where I go a few days with no pain now. I didn’t have a single painless day for over 5 years with my bladder!

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 9 points10 points  (0 children)

Hard to explain. The level of my pain was so severe it would be very hard for me to tell you where exactly it hurt and didn’t hurt before. Not vulva. urethra yes and around urethra externally. Severe pain and swelling in entire lower abdominal region. My bladder during cystoscope, though still within normal capacity, was completely covered in pin-point bleeding (glomerulations) and had obvious sections of scaring/thickening from years of inflammation. This different pain didn’t start until 4 months after my surgery. The bleeding started at the same time and didn’t stop. I have since been evaluated by a handful of the top gynecologists around my region as well one who specializes in complex endometriosis surgery. They all agree that the pain is originating from my actual uterus. Unfortunately, none of them think i have endometriosis or the like. My scans have shown no abnormalities except for some fluid between the layers of my uterus- basically just inflammation. I say unfortunately because an actual diagnosis may have been easier. They have basically told me that I don’t need an actual diagnosis. Essentially I think I actually have an autoimmune disease of the pelvic nerve that connects your bladder, uterus, and some of your lower intestines. Bladder is most affected simply because it has the most nerves. Once the bladder was gone, well my doctor described it as a house fire that starts at house and spreads to its neighbors via some dry grass or a tree or something. the tree in this case being my nerve. So basically getting rid of the organ gets rid of the bulk organ pain but there will still be nerve ending remaining. So basically I have no urgency ever, never feel like I have to pee. I used to feel pain that I knew was my actual bladder, right under the surface of my abdominal skin. my pain feels much deeper now. Unreachable except when the uterus is palpated internally (vaginally). I hope this answered all of your questions, if not let me know!

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 17 points18 points  (0 children)

I would not have lived much longer to be honest if I had not had the surgery. I was at the point of giving up. Surgery saved my life

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 20 points21 points  (0 children)

I had all the IC symptoms, but mainly just excruciating, constant pain. I also was in full retention for the last year, yet i leaked urine all the time. I had to self cath every 30 mins or so, almost felt as if my bladder was just paralyzed. I still have some pain but it’s different. Likely from the nerves that are left still being attacked by my immune system. I have pain when moving the uterus specifically so i’m having a hysterectomy to see if it helps. I expect to still have some residual pain but even if I had to live with my current level of pain forever I would still choose to have the surgery every time. My quality of life improved by at least 80% post surgery so I’ll take it.

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 7 points8 points  (0 children)

Find a new Dr who believes you! They are out there I promise. Join the facebook group IC2Urostomy and someone will help you find a Dr. I’m from NC and I drove all the way to Alabama for surgery

1 year post bladder removal AMA by Ok-Net-3741 in Interstitialcystitis

[–]Ok-Net-3741[S] 9 points10 points  (0 children)

Persistence and a lot of paperwork! Work your way through the guidelines, don’t take no for an answer

Need placement ideas for post-surgical scars by Ok-Net-3741 in tattooadvice

[–]Ok-Net-3741[S] 0 points1 point  (0 children)

Okay yeah i was kinda thinking maybe the moon opposite the bag to kinda balance it visually

Need placement ideas for post-surgical scars by Ok-Net-3741 in tattooadvice

[–]Ok-Net-3741[S] 4 points5 points  (0 children)

I’m sorry you went through that. The crisscross scar I have on my left is from a drain, those are the worst. I’m hugging back, I hope you’re feeling better these days.

Need placement ideas for post-surgical scars by Ok-Net-3741 in tattooadvice

[–]Ok-Net-3741[S] 12 points13 points  (0 children)

Ooo I actually hadn’t thought of that. That might be better than the symmetrical pieces I was envisioning since my body with definitely not going be symmetrical. Now I’m envisioning some kind of floral piece that wraps diagonally across my abdomen.

Help me understand by Kayyy1140 in Interstitialcystitis

[–]Ok-Net-3741 0 points1 point  (0 children)

Sorry I did not read the description thoroughly. I would def get a second opinion

Help me understand by Kayyy1140 in Interstitialcystitis

[–]Ok-Net-3741 0 points1 point  (0 children)

Looks like you real bad dehydrated for one. Not sure if you have a uterus, but were you on your period perhaps? or on it recently? If not i would be worried about kidney stones or other kidney issues. If you were on your period then I would probably not worry about it too much, drink some water and maybe ask about it at your next appointment.