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 😊
Your phone, a pouch to hold it in and tie it to the bed, an extension cord, and a couple of wall chargers and cables. Bring an adult multivitamin like Centrum Silver. The part of your intestine that absorbs B vitamins is removed, so you need a good multivitamin with B forever now. If you feel pains in the nerves of your fingers, that's because of the lack of B and/or diabetes.
You may also want to bring toenail clippers, a couple of pens, and paper to write on. If they jam that thing down your throat, you're not going to be able to speak. Lollipops or something with a handle to cause your mouth to create saliva because with that thing down your throat, you can't eat or drink; your mouth will be parched like you wouldn't believe. You'll be begging for ice cubes.
I was in for 3 weeks for my Illeistomy but had to go back for another 10 days due to an infection and no nurse to help me at home like I was promised. When I finally got one, I was strong enough to take care of myself. 🙄
Absolutely the worst experience of my life. I'd rather die than go through another traumatic surgery again. Yours hopefully won't be as bad as mine.
And whatever you do, do NOT sit up or on your side in the hospital bed with an Illeistomy bag; it will pop off and leak, stoma output will eat your skin quickly. They don't put them on very well. You'll need hand sanitizer and need to feed yourself by hand to mouth while lying down. Do NOT eat anything hard, especially nuts, seeds, vegetable skins, mushrooms, and onions, hard parts of meat, fried or overly salty foods; everything has to be mushy or diced into tiny bits or risk a clog. Avoid coffee as it makes the burns far worse. Avoid bananas by themselves all at once; it causes pancaking issues which forces a bag off. Eat them in very small bites along with other more liquid-like foods at the same time.
Soft meats, no sausage, no beans, no corn. A cup of rice, potatoes, meat, or wheat/pasta at a sitting; too much will cause intense liquid to fill your bag. No sports drinks or nutritional drinks unless what they give you is stoma-friendly, or it can cause diarrhea and the stoma just keeps spewing for hours or days straight.
Stay on your back until later when you get up and walk, someone to help you keep a straight back. If you bend over any or sit (unless straddling a stool or toilet), the bag pops off. 🙄
They don't put the bag on very well because of scabs from surgery, so they pop off easily because they have to change them out often anyway because of the scabs coming off. Sometimes they just take the whole bag off each time instead of draining it. 🙄
My advice is to get a bunch of big paper cups and drain the bag yourself (they angle it sideways to your right), especially at night, and put the cup on the table. It will stink like hell, but it's far better than them always ripping the bag off 20 times a day or the nurse not showing up and your bag pops off from being overwhelmed.
On your left will be a surgery scar, and it will fill up with stoma output if you're not careful. My advice is for them to create a deflection wall using waterproof tape so it just doesn't flow in there.
Don't eat anything after lunch or after 2 pm. It takes time to digest, and you risk an overfilled bag during the night when you're sleeping. You can eat a small snack like applesauce after 2 pm; it also retains output. So try not to eat until after a bag change if at all possible.
Sodas will produce gas, as well as some foods. The bag will fill with air (ballooning) and has to be burped. 🙄
Tell them you want the stoma sticking out at least 1/2 to an inch outside your skin surface; a near or flush or recessed stoma is extremely hard to prevent leaks. I know. 🙄
Damn doctors always trying to make work for themselves with stoma revisions. 😡
So much to learn, too little post space. 🙄
I really feel sorry for what you're about to go through. Sometimes I wish they would have let me die instead. 😢
Edited: Clarified
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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
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.
You may want to lie to fellow sufferers, but I'm not.
The truth is good. If they have to get the procedure done, then it's going to happen no matter what I say.
I'm just pointing out problems and issues that they can avoid so they don't suffer like I have.
And no, I didn't experience any substantial pain either, so there you are lying right there because I didn't mention pain. Only suffering, which can be avoided if they learn from others' truthful experience.
For instance, if my stoma stuck out sufficiently, then I wouldn't be having wafer issues and leaks, so do you think I shouldn't say anything? Should I just let them suffer for years afterward with numerous bag changes? Further surgery for a revision?
Are you a doctor or work for the medical supply industry or something?
You're the problem here, by sugar-coating and not truly assisting.
So go back and READ my post instead of just seeing what you want to see and calling me a wimp just because "pain" popped into your mind for some reason. Likely a Freudian slip or you need new glasses. 😆
I'm just trying to assist by not allowing others to suffer the same issues I had.
Is there a problem with that? 🙄
I am a 60+ year old man like you, so don't go pulling seniority b.s. on me because you can't comprehend a post and have some underlying issue with pain you don't want to face up to.
Don't respond to me anymore and I won't respond to you, how's that sound? 🙄
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.
The OP already went through surgery and is excited to go through another one.
I doubt very much that my opinions and horrible experience would change her mind any.
If you need to have it done, you need to have it done.
I'm just stating what made my experience horrible (like when they cut my staples and my chest opened up wide) that should be totally avoided being seen (knock them out first) for a much less traumatic experience.
So no, I'm not going to sugarcoat anything... sorry.
People need to know so doctors and staff can make things better for people instead of traumatizing them like they did me.
This was supposedly at one of the top 100 hospitals in the country as well. 🙄
Sorry, that's my opinion and I'm sticking to it.
However, I did edit to clarify that my experience was traumatic and theirs likely won't be.
Somebody has to tell the truth.
Maybe she will pass this onto doctors and staff so she won't experience the same problems?
If people don't speak up, then nothing changes.
Feedback is good. 😊
Good, keep it that way.
I don't have time for responders reading things that are not there and jumping to conclusions.
You're blocked.
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.
Obviously, you weren't in the hospital for 40 years. 😊
People's systems get tougher over time. Things I couldn't eat early on with my ileostomy I can eat now.
My advice is for her hospital stay, which at first can be problematic as she hasn't yet learned what to eat or not to eat, as she hasn't visited a nutritionist. Learned what foods to mix with other foods while eating.
Hospital food seems to come standard for everyone, and certain foods can cause issues with an ileostomy, especially when they serve steak or chicken, which is sometimes overcooked and has tough parts, or tough vegetables like carrots or skins on veggies like squash. Spinach or salads, which can cause diarrhea.
Anne
I'm not trying to scare you or anyone out of getting necessary surgery.
I'm just providing extremely helpful advice and alerting you to potential issues that made my experience traumatic so you can avoid them during your hospital stay.
So with that...
Here's an ileostomy food list and warning signs. Courtesy of my nutritionist with some additions, you'll need this so I suggest you copy it for further reference until you see a nutritionist.
[b]Signs of a clogged stoma.
[/b]
No output or only watery output under pressure for a few hours after eating could be caused by a covered stoma by improper application of an appliance, typically the hole is cut too small or too much paste is used. It could also be caused by eating hard food. Seek treatment at an emergency room, remove the appliance if necessary, and wait. If clogged, severe pain will eventually appear which hopefully will clear itself. If not, a trip to surgery would be necessary. Unfortunately, very high and frequent output will ensue after clearing for quite some time, which will likely make putting on a replacement appliance difficult. Use stool thickening tactics (below). If going to an ER, bring your own ostomy gear and a change of clothes as the hospital likely doesn't carry or doesn't know how.
[b]What is "pancaking?"[/b]
Pancaking occurs when a vacuum in the bag (likely due to a clogged filter) or super thick stool blocks stool from depositing to the bottom of the bag. This can force the bag off and cause leaks. Control what one eats and by mixing and consuming stool thickening and stool softening foods at the same time to get a balance.
[b]What is "ballooning?"
[/b]
Ballooning occurs when foods eaten produce too much gas and the filter gets clogged (likely due to lying down) and thus forces the bag off and causes leaks. It can be burped to release this excess gas but really addressing the issue is diet choices.
These two conditions can cause premature bag replacement and leaks which burn the skin. It's better to replace the appliance if there is any continuous stinging pain, don't just live with it. Keep an eye on your ostomy supply and have ample reserves.
I've found that caffeine, in coffee, tea, and even chocolate causes diarrhea and can assist in controlling flow so stool is more liquid. However, coffee makes output very acidic making burns worse. Dried Chinese Crispy Noodles, Cheerios, or applesauce (peeled apples) are the exact opposite, a stool thickening food. By mixing these with other foods one can manipulate their stool output and counter the issues above. Also, the severe thickening helps in cases where one has severe diarrhea and is unable to reattach a new bag due to high flow.
[b]Eating Guide
[/b]
Partially copied from my nutritionist's guide. Ileostomy Nutrition Therapy from the Academy of Nutrition and Dietetics. (This handout may be duplicated for client education.)
My recommendation is to see a nutritionist for the full guide as not all can be pasted here
I've added my own observations to further clarify
Chew all foods well to the consistency of paste.
[b]Foods That May Cause Blockage (very bad avoid!)
[/b]
Apples, unpeeled (unpeeled and applesauce are excellent thickeners, don't eat the core, chew well)
Bean sprouts
Cabbage, raw
Casing on sausage (inside fine if no tough parts, avoid swallowing if a chunk is felt)
Celery (avoid)
Chinese vegetables (stir-fried crunchy, too hard, need soft veggies with no skins)
Coconut
Coleslaw
Corn (grits also, corn anything doesn't seem to dissolve in the stomach)
Cucumbers (skins bad, inside chewed up good seems okay, no seeds)
Dried fruit, raisins
Grapes
Green peppers (red, yellow also) pureed or very very small seems okay in small amounts
Mushrooms (doesn't dissolve in the stomach) pureed or very very small seems okay in small amounts
Nuts (totally avoid)
Peas (mushy interior okay, like pea soup, skins a problem)
Pickles (skins a problem, inside if chewed up good seems okay, seeds not)
Pineapple (liquid okay, mushy parts fine, hard parts not, tricky)
Popcorn (totally avoid)
Relishes and olives
Salad greens (diarrhea nightmare too)
Seeds and nuts (avoid)
Spinach (doesn't digest, pureed perhaps)
Tough, fibrous meats (for example, steak on grill, well done, tough parts especially)
Vegetable and fruit skins, (any avoid)
Whole grains (no grits, oatmeal seems to be okay, Cheerios is an excellent thickener)
[b]Foods That May Cause Gas or Odor
[/b]
Alcohol
Apples
Asparagus (stink)
Bananas
Beer
Broccoli (clog hazard)
Brussels sprouts (clog hazard)
Cabbage (clog hazard)
Carbonated beverages
Cauliflower
Cheese, some types
Corn (clog hazard)
Cucumber
Dairy products
Dried beans and peas (clog hazard)
Eggs (don't digest in the stomach)
Fatty foods
Fish (cooked salmon in small portions may not, nor stink)
Grapes
Green pepper (red and yellow also, clog hazard)
Melons
Onions (clog hazard)
Peanuts (clog hazard)
Prunes
Radishes
Turnips
Soda and sipping using straws, (drink from glass instead)
Seafood (oh God does it stink!)
If you're having pancaking issues, a small amount of something above (like having a soda during a meal) could introduce some air into your diet and thus into the bag. Also, by avoiding too much thickening foods by themselves which often contribute to pancaking.
[b]Foods That May Help Relieve Gas and Odor[/b]
Buttermilk
Cranberry juice
Parsley
Yogurt with active cultures (Greek yogurt)
[b]Foods That May Cause Diarrhea (looser or more frequent stool)
[/b]
Alcohol (including beer)
Apricots (and stone fruits)
Beans, baked or legumes
Bran
Broccoli
Brussels sprouts
Cabbage
Caffeinated drinks
(especially hot)
Chocolate
Corn (in my experience corn anything doesn't digest in the stomach, just passed through and out, kernels/popcorn will clog)
Fried meats, fish, poultry (KFC, supermarket rotisserie chicken very bad, anything soaked in brine)
Fruit juice: apple, grape, orange (small amount okay)
Fruit: fresh, canned, or dried (small amount okay)
Glucose-free foods containing mannitol or
sorbitol
Gum, sugar-free
High-fat foods
High-sugar foods
High salt foods (KFC, supermarket rotisserie chicken)
High seasoned foods (blackened)
Licorice
Milk and dairy foods (small amounts okay)
Nuts or seeds (bad, clog hazard)
Peaches (stone fruit, one rarely okay)
Peas
Plums (stone fruit)
Prune juice or prunes
Soup
Spicy foods
Sugar-free substitutes
Tomatoes
Turnip greens/green leafy
vegetables, raw
Wheat/whole grains
Wine
Rice (1/4 cup in mixed in food okay), refried beans (1/4 cup okay) pasta (one cup max).
Any foods soaked in brine or fried (rotisserie chicken, Kentucky fried chicken etc)
[b]Foods That May Cause Diarrhea (looser or more frequent stool)
[/b]
Alcohol (including beer)
Apricots (and stone fruits)
Beans, baked or legumes
Bran
Broccoli
Brussels sprouts
Cabbage
Caffeinated drinks
(especially hot)
Chocolate
Corn (clog hazard, even grits, doesn't digest)
Fried meats, fish poultry
Fruit juice: apple, grape,
orange
Fruit: fresh, canned, or
dried
Glucose-free foods
containing mannitol or
sorbitol
Gum, sugar-free
High-fat foods
High-sugar foods
High salty foods
Licorice
Milk and dairy foods
Nuts or seeds
Peaches (stone fruit)
Peas
Plums (stone fruit)
Prune juice or prunes
Soup
Spicy foods
Sugar-free substitutes
Tomatoes
Turnip greens/green leafy
vegetables, raw
Wheat/whole grains
Wine
Soylent nutritional drink
[b]Foods That May Help Thicken Stool
[/b]
Applesauce (unpeeled apples, no cores)
Bananas
Barley (when OK to have
fiber)
Cheese (cheese food may be a clog problem, use real cheese)
Dried Chinese Crispy Noodles (severe thickening, mix with other food that causes diarrhea)
Marshmallows
Oatmeal (when OK to have
fiber)
Pasta (sauces may increase
symptoms) (in my experience more than a cup of pasta causes diarrhea)
Peanut butter, creamy only, nuts clog (makes skin oily)
Potatoes, no skin (skin clogs, more than a cup causes diarrhea)
Pretzels (salty may cause more flow water consumption)
Metamucil, mix or crackers (mix in cup of water and drink before it gels up)
I'm adding to this list based upon experience.
Note that not everyone is the same and some can tolerate foods others can't. People with an older ileostomy may be more weathered and tolerant than one with a fresh ileostomy.
Actually I have LESS problems from laying on my back with output around the stoma, because I take the time to put a good seal on.
It's the stiffness of the paste and wafer on the skin around the stoma while sitting or bending that is causing my problems.
So for me the longer I remain flat on my back or standing straight up, I'm fine.
In fact I've charted my pain, I'm fine grabbing a quick breakfast and laying back down.
It's when I go out to lunch and do small chores like driving that causes problems with skin stress and eventually go away after laying back down and going to sleep.
By morning the pain is gone.
It's almost like I need a back brace or something. 😆
Problem is I can't tell if the pain is output causing or skin stress caused, they feel about the same.
When I was on coffee there was no doubt, the little leak would burn like the dickens.
But it was causing too much damage and infection, so I quit it.
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. 🌞
If driving is a chore, 😂, I have no idea how I survive each day.
I agree, some loose-fitting pajama shorts are like underwear; it seems they don't give any, and unfortunately, you're exposed quite a bit sometimes.
Especially since the gown has to go on backwards, and you may kick off the sheets. You need to keep an eye on the ileostomy bag as it can fill up quickly, especially on an IV. 🙄
Another thing is to call in the physical therapy people and have them explain how to do leg exercises, give you a large rubber band to work your arms with, etc. You need to strengthen your legs and arms to be able to walk. They give leg squeeze machines to keep your blood flowing, but you really need to kick that to the curb as soon as you can.
Don't walk unless someone is around helping you.
And I like driving; being cooped up inside all day watching Netflix is getting boring.
But it works. 🙄
I need to identify and solve these issues so I can have a normal life.
It seems the otosmy suppliers don't agree.
I'm debating mixing painter's caulk with otosmy paste and seeing what happens. 😆
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!
Thank you so much for the details! I really appreciate it.
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.
