Living with an Ileal Conduit

My journey with cancer began in the summer of 2019, when I began having bright red blood in my urine. As an older woman, I had the usual bladder urgency of many women who have given birth, and whose muscle tone isn’t what it once was. No big deal; there’s a pill to help that.

I felt great and was caring for my husband whose health was declining, so I neglected having annual checkups for about 3 years. I was too busy with my husband’s appointments, physical therapy, and in the process of downsizing and moving to a retirement community. There was definitely no time for unnecessary appointments for me.

Blood appeared in my urine

Then the blood appeared. I went on with a week-long vacation with my family. Without mentioning the situation to my family, I quickly made an appointment with my doctor upon my return. He took one look at my urine and said I needed to see a urologist as quickly as possible. Fortunately, my husband had a wonderful urologist, and he could see me within the week. He did the TURBT, finding my bladder had multiple tumors, and I definitely had stage 4 cancer.

Finding a doctor who answered all my questions

He referred me to an oncologist at that hospital, but upon visiting with him, I found him to be quite abrupt, and felt our personalities would not jive. I drove home, got online to the major cancer hospital near me, and was blessed to get the foremost gyn/urinary cancer surgeon on staff. He had a great personality, took an hour or so with my family, answering all our questions. After giving me all the stats for my stage cancer without treatment, laying it all out on the table as to treatment, plus losing my bladder, I hoped beyond hope that chemo would rid my body of the cancer cells without my having to have radical surgery.

I began chemo, and it went more smoothly than I could have ever dreamed. I did get more tired with each treatment, did lose more hearing (I already wore hearing aids), and did get neuropathy in my hands and feet. The hearing loss and neuropathy often do not improve. But I continued to be able to care for my husband, who was ambulatory, but needed assistance, and had some dementia.

Radical bladder removal and painful bowel movements

My radical surgery was in late February, right before Covid hit, so my family could visit. I had an ileal conduit, with the ostomy bag. Upon going home, it was rough getting adjusted to the changes in my body.

The biggest problem was the bowel issue, and having that first bowel movement (I did not have one in the 6 days in the hospital, in spite of having stool softeners daily, and taking a minimum of pain medications, which can really constipate you). Any time the bowel is operated on, that first bowel movement is usually very painful. With me, it was dreadful. Having formerly been an RN, I knew what to expect, but that doesn’t make it easier. If you are facing an ileal conduit, be sure and have someone with you when you attempt that first BM. It is probably the worst part of the healing process. For about a month, it was a painful thing to endure.

Learning about different types of stomas and bags

The urostomy bag I could handle, but still had many instances of leaking. My house has wood floors, which were easy to clean, I kept blue hospital pads on my bed, and my shoes were ones I could throw in the washing machine.

After 2 months, I called the ostomy team at the hospital for an appointment. The nurse took a look at the stoma, told me I have a convex stoma, so needed a different type of bag. That solved the problem, until I had to get internal ureteral catheters (which come out the stoma, into the ostomy bag).

My need for those was due to scar tissue forming in the ureters, and the kidneys not emptying completely, something I did not detect, as I was having a great output, but was picked up on a CT scan. This is not an uncommon occurrence, scar tissue in the ureters. But the catheters did present a problem, as I could not get as good a seal with the ostomy bags. Well, there’s a remedy for that, too. Barrier strips. Adhesive strips which are placed around the edges of the ostomy bag, overlapping the adhesive.

Feeling good and setting goals for myself

I am presently receiving IV immunotherapy, since the pathology report after the surgery showed microscopic cancer cells. The oncologist let me heal well from the surgery, then I began that in August.

At 76 years of age, I cannot believe I feel this good, and am anxious to get out and do things. I had 2 goals after being ‘under house arrest’ with Covid: to get back to church, and to take a trip out of state to visit my siblings (I have 9, and we are all still alive, but not getting younger). My oncologist encouraged me to take that trip (which I am presently enjoying), and I have gone back to church, with social distancing, for four weeks. I realize how fortunate I am that this did not occur until my older years, whereas so many are much younger when they receive their diagnosis.

My faith in God helps me

I am a Christian, and God has sustained me every step of the way. I take nothing for granted. I find things to make me laugh, do not dwell on having cancer, as there are many people who are living with all kinds of diseases. I try to encourage others in what they are suffering through. Almost everyone has something, whether physical, mental, or relational, going on. We are here to help one another on this journey through life.

Sleeping through the night with an ileal conduit

Having an ileal conduit has it’s advantages. I can sleep through the night, without going to the bathroom. I would be a great camping partner! Etc.

Oh, with winter coming on, I have a tip for those who like to sleep in p.j.’s. Make about a 3-4” slit in the seam on your pajama pants where the tube of the bedside bag can slip through, and hem the raw edges. It is so much easier to turn over without having to worry about pulling up your pant leg, and getting your entire leg cold, just to accommodate that tube. 🌷

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