Hello all, my BB surgery is scheduled for 11/18!! I’m excited, but growing more anxious by the minute. I’m getting my hospital bag ready, and I’m wondering if anyone has any tips for what to bring?
Also, how long were you in the hospital for BB/ileostomy? I’ve already had my colon removed, so this is proctectomy//end ileostomy.
Thanks in advance 😊
G-Day Ann_Shirly,
Don't let Shamrock scare you. I had the same operation and had hardly any pain, and a couple of others here had not much pain as well. Some people like to make it sound as if they went through the end of the world; they are probably just wimps. Your surgeon will look after you, and after it's all over, you will be a new woman. Good luck and keep us up to date. Regards, IGGIE
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Hi Crossley. Ya know, I think it’s all about feelings. I don’t mean the pain feelings which could control everything. I mean the feelings inside our heads, our hearts and even our souls. I mean the feelings of who we are now compared to who we were; how we accept our situation or maybe we don’t. My wife asked how I felt and I said, “like crap”. She asked what hurt and I answered, “Nothing hurts, well, everything hurts, I don’t know, It all sucks.” That was a long time ago. You question if your feelings are normal. How normal is it to relocate your butt hole to your belly where it’s usually in the way of your belt and, you know. But that’s where we are and for lots of us we are so much better off than we were before, physically. Emotionally, psychologically, well, that might be a different story. I believe talk therapy is wonderful if we could find a real empathic or sympathetic listener. So guess what! I found MAO and began “talking” with a keyboard with some of the wisest, kindest most sympathetic and compassionate folks on the planet. Regardless of where we’ve been, lots of folks here have been there and worse places and found their way back healthier and happier. We really do help each other.
Keep “talking”,
Mike
Listen Mr. Doom, we are here to help new members, not get a kick out of scaring them before they go for an operation. Your problems don't have to be their problems. There are times when it's best to just shut up. Goodbye IGGIE
Plenty of books downloaded on your phone so you have something to read and occupy your mind; this is more a luxury, not a necessity. A gel cushion to sit on if the hospital allows you to take one. I was in for 5 days, but that was almost 30 years ago; now you could be out sooner.
I had a total pelvic clearance and did not have as many problems as Shamrock did. Just bring your brush, your phone, maybe some lotion if you get dry. The hospital will have everything that you need. They will give you meds to make you feel better. I was only in there for 2 weeks; everything went fine. Good luck.
Hi Anne_Shirley, I'm with Iggie. This surgery for me was emotionally easier because it was all my choice. I was so done with my j-pouch and was having it removed along with getting a BB. Sore just like the other surgeries but not scared. Yes, I was sore for awhile near my bum, leaning to one side, standing or lying down until things were all healed. Bring loose bottoms to go home in. I was in for five days, same number as for my end ileo first surgery and j-pouch creation second surgery. Assuming there are no complications, you'll be just fine. Keep us posted 🤗.
I was left with a colostomy and urostomy. So far, I'm doing okay; it's been 3 years now.
Nothing wrong with a good dose of reality, but could have done without the final two sentences of your initial reply. It doesn't help, it just frightens.
Shamrock, your suggestions are great and really on point and helpful. Words like, "I'd rather die than go through this again" are not helpful to someone getting ready for the same surgery. Kind of like telling a woman who's preparing for childbirth how you felt like you were being ripped open when you had a baby. Not helpful. Giving a heads up about things = good; using really intensely negative terms to describe your experience BEFORE their surgery = not good.
Hi all, in reply to some of Shamrocks' comments, I've had my ileo for almost 40 years and I've never had a pouch pop off while lying on my side. Is that why you have skin irritation from lying on your back and letting it pool around your stoma? Even the best appliance will eventually leak. The part about not eating bananas is not accurate, as I can eat them with no problems. With an ileostomy, you need extra salt, and I sip on a sports drink throughout the day that I mix myself so as not to get too much sugar.
I had BB surgery and a colostomy all at once. I was there for 5 days. Take some slip-on shoes because they'll want you walking around, something easy to get on/off like pajama pants/shorts so you're not having to be all tied up in those stupid hospital robes, phone/charger, glasses if you need them. I was in a private room, but I could see having noise-canceling headphones as being helpful if you're sharing a room. The more crap you take, the more crap you have to keep an eye on and take home. Travel light; you won't be there long enough to take the “kitchen sink.” Enjoy your stay and rest up. 🌞
What's in the coffee that makes your skin burn when it leaks?
No worries, just read further up; it's the caffeine.
Ileostomy here… 4 years - only remember how much I wanted one thing that no one could provide… ready…
A MARSHMALLOW - and I hated marshmallows… Must've been a premonition.
Anyway, best wishes for a speedy recovery.
Hello Anne,
I've had my colostomy for just over a year. I'm glad you have had time to get ready for the operation and have a good mindset going in. Others, like me, did not have that, so I think that is one big advantage!
I know there is a difference between ileostomy and colostomy, but when it comes to surgery it's all surgery, in my opinion.
In hindsight I was lucky I didn't experience as much pain as I feared. I was in the hospital for 7 days, had pain meds at home for the next 5 and then was able to switch to Tylenol if needed. For me, the pain was more from the wound where I had to be cut in the middle of my stomach. The stoma area not so much, more irritating in the beginning until I got used to it.
Hospitals stink at ostomy care, so if you have an ostomy nurse there it will be a big help. I left the hospital without a clue what to do, what supplies etc. I had a wonderful ostomy nurse I saw after surgery and she was a blessing indeed!
Soft bland low fiber food after. I seriously don't look at mashed potatoes the same. Ha!
I would make sure to bring phone and charger. I like the idea of having a pouch to hang on the bed. Wish I would have had one. For me, my toothbrush, hairbrush, my favorite lotion with it's wonderful scent made me feel better once I was not so out of it from the surgery.
I would have liked to have my own water bottle. My hospital did not have lids and I was constantly spilling my cup all over myself. It's a gift I have, apparently.
If you have a favorite pair of socks with the rubbery things on the bottom, bring them. All they had were XL when I was there, and those hideous things would never stay on my feet.
Wishing you a very successful surgery, and quick recovery!
Shamrock, I’m so sorry that your experience has been hell. It sounds terrible 😞. I’m also hoping I have a better outcome than you.
I guess time will tell. I do appreciate the tips and advice, it’s good to know the bad with the good, especially when it comes to a lifelong commitment.
Oh yeah, I forgot about the stupid rubbery socks they had. My hospital would only allow me to walk with either those dumb socks or rubber-soled shoes/slippers. The socks would have been fine if they'd actually fit and been much thicker, but the ultra-thin generic ones they had were horrible.
You must have been either really sick or had horrible care. There's no need for exercising your arms/legs; you should be getting up and moving as much as possible. I got to my room about 7 PM and was walking the halls about 10 PM.
Same here... walking almost immediately after surgery... once the dope wore off... (or the dope awakened)😆
Shamrock did have poor care and was very ill and clueless where he was going via helicopter.
When the hammer fell on him...
He put his trust into the system which burned him.
I can sympathize. It happened once to me. Broke femur and the hospital, a local well-known hospital, kept me doped for 2 days. Was transferred to a trauma center nearby.
They reset the bone. Boom, done.
A simple broken leg! A local hospital. 👎
He has a story. Not a very good one... just remember to include:
"For me, this was..."
"For me, that was..."
Because it's just you, your experience which to some degree needs to be mentioned, but not set in stone.
One thing learned... you become your own advocate.
He may have been really sick. After my surgery, they placed me in the ICU, and I was unable to get out of bed for days. Even one day of inactivity causes muscle loss, and I needed rehab to get back to my former level of mobility. So, exercises are a great idea if you are not well enough to move.
To the OP, get up and move as much as you can. You don't mention being overly sick, so there's every reason to expect you will be able to move soon after surgery. In my case, I was quite ill at the time of surgery, which contributed to how sick I got after surgery. I don't think my experience was typical.
Editing to add: Surgery quite literally saved my life, and I have never regretted it. Good luck!
"Your blocked" is grammatically incorrect. It should be "you're blocked."
You've had a rough time of it. I can better understand the tone of your posts now. I had excellent medical care and still spent 5 weeks in the hospital only to return for another week shortly after discharge. Shit happens.
I laughed at the story about Twinkle Twinkle Little Star. Were they playing it each time a baby was born? My hospital played Lullaby like that. Drove me crazy for the longest time.
You've made your choice re: the cancer and you seem to be content with your decision so I won't comment on it. I hope you can find some peace and something to bring you a little happiness.
Shamrock,
Last line very touching and hitting home, although I am a different kind of bag lady (gallows humor).
Hope all goes well, Ann Shirley.
Just wow! There's a lot I could say about the right to refuse treatment and even to leave the hospital against medical advice, but you probably know all that by now.
Your story sounds like a third-world experience.
I'm sorry that happened to you. Sending you a virtual hug.
May I ask what a bb surgery is? Tried Googling it but yielded no results.
Thank you