Perimenopause and Ileostomy: Seeking Advice and Experiences

Any ladies in perimenopause with an ileostomy? I would love to hear from you. This is probably the worst thing I've ever encountered! The newest symptom is belly aches, bubbles, and pain! I have never had this issue in all the 30+ years of having an ostomy! I never know if whatever new symptom I'm having is a result of losing hormones or another new medical issue! 😩

I was one of those annoying creatures that breezed through peri/meno/post-meno without any of the symptoms I'd heard of, apart from the thinning hair and chin hairs that seem to grow an inch overnight, and I seriously could do without that "what fresh hell is this?" feeling when I look in the mirror each morning!

The only thing related to the ileo was that I did notice skin changes where the bag was not sticking as well for a few months, but that's cleared up now.

Definitely could be hormonal though; once we start losing estrogen, lots of annoying things can happen. Definitely check with your doctor if you're having pain of any kind. Sorry that you're going through this.

I'm in the earlier stages of perimenopause… currently have an IRA (ileorectal anastomosis) so no colon. I was supposed to start estrogen therapy last fall, but then I had an accident, and that took center stage for nearly a year. I lost an ovary (ovarian torsion) during my first high-risk pregnancy (no ileo during that, 'just' had an unknown autoimmune disease attacking my colon) and wondered, with only having one ovary, will menopause happen sooner? No ob-gyn has been able to give me a definitive answer. I've actually been pretty disappointed with how little help ob-gyns are in overall female healthcare. I've had doctors that saved me and my babies' lives, but it seems other than those windows, they have been able to answer very few questions.
Looking forward to reading what others have to say on this subject 🙂

Very little help out there. I do now follow Mary Claire Haver. Her website, Pause for Life, includes a search for experienced meno providers and tons of good info to help us. I am taking a great supplement for mood/rage and am starting other supplements that were recommended by a nurse practitioner I saw last week. She is actually the one who shared Mary Claire Haver with me. I had breast cancer last year that was hormone-driven. BHRT isn't off the table, but I won't seriously consider it unless my symptoms become absolutely unbearable.

Sorry, I am not a lady, and my wife does not have an ileostomy. My wife had a difficult time with perimenopause, and I had a front-row seat. I did a lot of research into perimenopause, and I have an ostomy; therefore, I can share a few pointers that may be helpful to you.

The primary link between perimenopause and ostomy function is through the digestive system, which is highly sensitive to hormonal changes, particularly estrogen and progesterone.

The hormonal fluctuations that define perimenopause can directly impact gut function, skin health, and overall well-being.

The most direct impact of perimenopausal hormonal shifts is on gut motility. Fluctuating levels of estrogen and progesterone can alter how quickly waste moves through the remaining small intestine.
    • You may experience uncharacteristic swings in your stoma output. This can manifest as periods of thicker, slower-moving output akin to constipation, followed by episodes of very high-volume, watery output (diarrhea).
    • Progesterone can slow down digestion, potentially leading to thicker, more sluggish output. Conversely, for some, the stress and anxiety of perimenopause can speed up digestion, leading to looser, more watery output.
    • Thicker output can increase the risk of blockages, especially for those with ileostomies. Looser output can be more corrosive to the skin and may require more frequent pouch emptying.

Many women experience bloating and gas during perimenopause, and this is no different with an ileostomy.
    • Hormonal shifts are a classic cause of bloating and gas during perimenopause.
    • This can lead to increased gas production in the pouch, causing ballooning and potentially affecting the seal of your appliance. You might hear more "gurgling" from your stoma.

Hot flashes and night sweats (well-known symptoms of perimenopause) cause the body to lose fluids through sweating. When combined with the already high fluid losses from an ileostomy, the risk of dehydration and electrolyte imbalance becomes much more acute. Symptoms of dehydration to watch for include increased thirst, fatigue, dark-colored urine, dizziness, and a dry mouth.

A decline in estrogen can lead to skin becoming thinner, drier, and less elastic. This can make the peristomal skin more fragile and susceptible to irritation, itching, and breakdown from the adhesive on the ostomy appliance.

Fluctuating hormones can also increase overall skin sensitivity, potentially leading to reactions to products that were previously well-tolerated.
    • The peristomal skin may become more vulnerable to irritation from the adhesive on your barrier/wafer/flange. You might find that products you've used for years suddenly start to cause itching or redness.

The hormonal shifts of perimenopause are well-known triggers for irritability, anxiety, and mood swings. Coping with a chronic health condition and the physical changes of both an ileostomy and perimenopause can exacerbate these feelings.

The following symptoms are common to both ostomy and perimenopause:
    Fatigue
      • Perimenopause Cause: Hormonal changes, sleep disruption from night sweats.
    • Ostomy Cause: Nutrient malabsorption, dehydration, underlying IBD.
     
    Abdominal Cramping
      • Perimenopause Cause: Digestive slowdown, bloating from hormones.
      • Ostomy Cause: Partial blockage, high-output stoma, food sensitivity.

    Sleep Problems   
      • Perimenopause Cause: Night sweats, anxiety, hormonal insomnia.
      • Ostomy Cause: Needing to empty the pouch at night, leaking concerns.

    Mood Swings/Irritability
      • Perimenopause Cause: Fluctuating estrogen and progesterone levels.
      • Ostomy Cause: Adjusting to life with an ostomy, anxiety about leaks.

    Changes in Appetite
      • Perimenopause Cause: Hormonal influence on hunger cues.
      • Ostomy Cause: Fear of eating certain foods that cause blockages or gas.

You are dealing with two significant life transitions simultaneously. It can be overwhelming, but you are better able to manage them by understanding the interaction between hormones and your digestive system.

You specifically mentioned pain, and there are many possible sources. Three potential causes of stomach pain for someone in perimenopause with an ostomy:
    1. Pain Directly Linked to Perimenopausal Hormones
    2. Pain Linked to the Ostomy Itself — Exacerbated by Hormones
    3. Overlooked Pain Sources

The following explains each of the three types:
1. Pain Directly Linked to Perimenopausal Hormones
    ■ Hormonal changes associated with estrogen and progesterone can cause abdominal discomfort that is more intense than premenstrual symptoms and more unpredictable.
      • Progesterone can cause smooth muscle tissue (like the intestines) to relax, slowing down digestion. This can lead to hormonal bloating and water retention — causing a feeling of fullness and pressure in the abdomen. This sometimes leads to painful cramping.
      • The relaxation of the intestinal muscles can make digestion more sluggish. This can cause food to move more slowly, leading to cramping, discomfort, and a heavy feeling — ileus-like symptoms.
      • Hormonal changes can make your gut's nervous system (the "second brain") hypersensitive. This means you might feel normal gas movements or intestinal contractions as significant pain or cramping.

2. Pain Linked to the Ostomy Itself — Intensified by Hormones
    ■ Food blockages (partial obstruction) are a primary concern for ostomates. Slower digestion from high progesterone can increase the risk of a partial blockage. This pain is often:
      • This is crampy, colicky pain that comes in waves, usually around the stoma or in the abdomen.
      • Common symptoms are nausea, possibly vomiting, a swollen stoma, and very reduced or very watery output.
    ■ Gas pain caused by increased gas production from perimenopause.
    ■ Pain directly on the skin near your life investment (stoma). The types of skin irritations are:
      • Mucocutaneous Separation — where your life investment tissue separates from the skin. This can be painful and requires immediate attention.
      • Skin Irritation/Ulceration — leaking output underneath the wafer can chemically burn the skin, causing a sharp, burning, or stinging pain that is constant until the appliance is changed.
      • Folliculitis/Infected Hair Follicles — red, painful, pimple-like bumps around the stoma from shaving or friction.
    ■ Adhesions (scar tissue) from past surgeries can cause sharp, tugging, or aching pains, especially with movement. These were always present but might feel more noticeable during perimenopause.

3. Overlooked Pain Sources
    ■ Perimenopause is a stressful time. Living with an ostomy requires constant experimentation and adaptation. Stress is a well-known trigger for abdominal pain, exacerbating conditions like IBS, which you may have had before your surgery or which can newly develop.
    ■ Sometimes, pain from another organ system (referred pain) can feel like it's in your stomach. Perimenopause can bring an increase in issues like:
      • Ovarian Cysts — very common during perimenopause, they can cause a dull ache or a sharp, sudden pain on one side of the pelvis.
      • Uterine Fibroids — these can cause pelvic pressure, bloating, and a feeling of fullness.

Hopefully, this can help you better understand the interactions of ileostomy and perimenopause.

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