Struggling with Ostomy Care and Dietary Challenges

Wow. Never thought about where a pill would be assigned in the body! It makes so much sense. I will hopefully be seeing my hematologist tomorrow (today actually), and maybe he can help. I've already been taken off two side meds, and I guess I'm feeling okay. Had a bad reaction to an antifungal med after a long while of feeling good, so now I'm having issues, but I think they're getting better as my body adjusts. Time for me to get in bed for my day of doctors and hospital procedures. Thanks for your info ❤️😁🦄

Your one tough Granny. I hope things change for the better.

Regards, IGGIE

Grannyrocks, sometimes you gotta do what you have to in order to get the right care from a doctor, and if the doctor knows what he is doing and listens and cares, then it's worth it. I know it's a pain in the ass to travel; I have to all the time, and when there is traffic, it will take me 3 hours, and traffic on the way home 3-4 hours. When it comes to your health, don't settle.

Yo Granny. Ex NYer, here (Bklyn). Yes, surgeons and doctors know little about life after surgery. They hand you booklets to read. Wound and stoma nurses are a good resource, but their knowledge varies. Post-op, you need to be careful. Like starting your mower up after it's sat all year in the cold. At Mayo, they said to take small steps. Avoid seeds/nuts and peels/skins. Rice, pasta, and potatoes are good. Used oversteamed carrots and spinach. I started using a dietician three years ago. Now I peel all fruit and eat it raw. Chew well. Added oversteamed broccoli. Learned to shred my salad, chew it well, too. I found beer, pretzels, chips, and cookies thicken me up at night. Sleep longer and no splashing at the commode. It flipped me out when I felt a lump in my bag. Enteric-coated pills will often not break down. I use gummies or chewables if available.

Definitely agree with the ostomy nurse. Here in Virginia, the ostomy nurses are connected with wound care. May want to check that out also. Good luck!

My Ostomy Journey: April | Hollister

You are so right, Alex. I'm a retired nurse, and I was even nervous about food for my husband, who had an ileostomy. Now, 2 years later, he eats pretty much everything. It's trial and error. The fluid restrictions worried us a lot initially because of his low sodium, but even that concern has gone away.

Hey, where are you going in Virginia? I lived there for 6 years and saw a couple of different ostomy nurses at different places, and they were not connected to wound care. Ostomy and wound care are two completely separate things.

I think it varies by the nurse. They can choose certification in one or both. My ostomy nurses, both in the hospital and here at home, had dual certification, but not all do. My home ostomy nurse discharged me from ostomy care and came back two months later to advise on wound care for this problematic drain site.

I had an ileostomy placed in March of 2024. I got no support at the hospital in either the gastro surgical floor and most definitely not the leukemia floor! I was terrified of being moved to the leukemia floor (I have one chronic leukemia and two acute leukemias, including a rare one that has no cure but actually seems to be doing okay.) Sometimes I wonder if having an ileostomy has been helping leukemia issues as the way foods and meds move around is so different. I can eat Cheerios and bagels and cream cheese and pasta, potatoes (white), and most rice, which I like to make with bone broth for the nutrition. I eat fish, including shellfish, and chicken and all cuts of meat. It's mostly lunches that have me stumped. I believe I have gluten issues, but bagels seem to be exempt from that, thank goodness. Possibly lactose intolerant. I just hate when I'm in a restaurant and everyone has these healthy veggies with their meals, and there on my plate is a huge lobster. By itself. Someone above was talking about support. I don't have it. I have a husband who has been great and one friend who helps drive me for my chemo and stuff. Support is not a common aspect of cancer life unless you are very lucky. From family, friends, or physicians. And they just found some massive embolisms in my lungs and legs, so along with the leukemia and ileostomy, it makes life difficult (however manageable). Although I do have to say the ileostomy is the worst lol. Someone above mentioned having my husband bring food to me in the hospital. We were over 100 miles away, and he drove out and stayed at a hotel for two days. He was working. I had no place to store food, and they probably would have taken it anyway!! And what I also realized is that if you do not have someone at your bedside, friend or family, at ALL times, you are left to your own devices. I experienced it and recently read an email I sent to a friend where hospital responses were great until my husband left. Then there was nothing. This was at Memorial Sloan Kettering. Major NY hospital. But it was the truth. I couldn't even get a nurse to come in sometimes 😳😳. And I was in for 5 months. Had 3 showers. No tooth brushing. Rarely had sheet changes. Doctors were a laugh. My doctors. Again. Everyone who had someone in there with them had doctors who sat and talked to them. My doctors trooped in. "Labs are good" and walked out. And I even accidentally caught him on tape when I was videoing my ostomy and wound vac changes so I would know how to do it😡!! I periodically realize that these months of January-March of 2025 have been a blessing to me. I was inside a hospital where the bed faced away from the window. I didn't even see the sun. Or celebrate holidays and birthdays. Hard to imagine how I survived, but I still find it hard to go outside now. I'm coping. Doing probably better than expected since I had an oncologist recently tell me that she couldn't believe when she saw my name on the appointment list because she thought I was dead 😳😳🫤. That's the support I get. Oh well. I'm doing okay. Trying new foods. My hair has grown back in. My body loves the one week a month of chemo. Life could be worse. 🦄❤️🥰

Unbelievable the traumatic things you've been through and the treatment you got. That oncologist actually said that to you? You are one tough cookie, Grannyrocks.

Grannyrocks, hospitals do treat their patients poorly, and they don't care. Nurses don't come in when you call; instead, they are at the desk flirting with guys that aren't even supposed to be on the floor. You are correct; they do not give new bedding or any supplies, soap, shampoo, etc., until you buy the heck out of them, and you have to walk up to the desk and literally wait there, or you won't get it. Nurses shouldn't be nurses; they need the old school ones who actually want to help patients and not the ones that want an easy work schedule and a good paycheck. I, like you, have some horror stories. I had nurses that brought me back to my room after surgery and switched me over to the other bed, literally dropped me. I had nurses who, when I was being wheeled back, purposely ran into walls because I was holding onto the bedside, and they were pissed I was. Then they sat and were laughing and saying, "Haha, that's what you get." And there are many more. I am sorry you had to experience horrible care for such a long period of time; that's not right at all.

Hi Beth... I am close to Roanoke... The wound care center here has ostomy nurses. That's where I was sent when I had skin problems around my stoma. I had a very nice male ostomy nurse who gave me lots of information. I'm thankful I haven't had to go back! Good luck on your journey!

I know where that is. I didn't know they had combined the two out that way. When I lived out in Virginia, I lived in King William, and my doc was in Mechanicsville, and the stoma nurse was in their practice group, so she would be in the office.

Sounds like me until I couldn't do it anymore. As it is, I am traveling 1-1/2 hours each way the day after a bone marrow biopsy and brain tap next week!