u/Sqvanto

DX’d 1994; 32 years ago. Not by any measure yet old asf, but would rather not share my age.

Yesterday at 2PM, I showered and changed my pouch, hopefully for the last time after my second ileostomy and as of tomorrow, my second reversal. I have about 100cm of small bowel left, I’m told, until I enter short gut territory.

Rinvoq seems to be working well, after failing biologics for decades, following my first biologic “holiday” after an adverse reaction when Remicade was still experimental… and it never worked again and neither did any of the 6 subsequent biologic formulations/brands.

At first, I presumed that I was only in “surgical remission,” meaning my ileostomy prevented any foods or bevs from entering the diseased locale. But I was corrected by my surgeon, who explained that imaging indicates that part of the area above the closed off section of bowel was diseased before taking Rinvoq.

CAN I GET A HELL YEAH?!?

Surgery arrival time 6:30AM after a 30 mile drive into the big city. Guessing I will be NPO the day of and following normal vitals, I’ll get broth Thursday. Friday I assume I’ll advance to my favorite chicken sausages for breakfast and blackened chicken breasts for lunch and dinner, if there is a continuation of normal vitals.

I was told I’d likely be hospitalized for 3 days. Seems highly unrealistic.

Got a haircut, shaved my face and for a change, a certain crop of body hair — hair which was longer than… well, longer than I would have liked, last time.

How embarrassing, though I’m sure none of the professionals think twice about it.

But it makes me feel better about myself and I guess you can say I am preparing for my next and hopefully final chapter of poor health in life, until the day I die.

I am also finally prepared to break free totally from the poor dietary habits I grew up with, passed onto me by my mother who also has CD and UC. I have learned to cook from scratch and discovered lactose alternatives and have also learned to love turkey burgers over beef burgers.

I don’t eat anything deep fried anymore and none of the fast foods most aggravating of symptoms.

I don’t want to ever wonder again if any subsequent resections could have been prevented had I treated my gut better utilizing tools within my own control.

Date of surgery has officially arrived.

Waited 8 months for a reversal after a horrible month-long hospitalization and said ileostomy that lasted from just 2 days after Thanksgiving, thru the day after Christmas.

Made my 6:30AM arrival. Slept less than 4 hours. Finished registration and awaiting a call to the pre-op area where they always do well to cozy me up with warm blankets and hopefully a comfort med, however the latter is unlikely.

40yo male inherited crohn’s from mom who also has CD in ADDITION to UC. At what I believed to be my first DEXA scan at a hospital, I was told that I also had one elsewhere in 2018.
I don’t recall that whatsoever. I asked if she was sure it wasn’t just an order that I never did anything with (I was often like this in my previous years) and she said no.
But that’s neither here, nor there.
Anyway, my GI just read the DEXA while at home on a Saturday like he does cause he’s the real deal and told me I have osteoporosis and to see a PCP about it. I’m a bit surprised he didn’t just tell me to see a rheumatologist.
I’m not sure this is accurate but Gemini AI by Google found info to suggest that the osteoporosis could theoretically be largely reversed due to my age. Though I presume that’s if I don’t continue taking crazy levels of prednisone.
Any reassuring stories and/or input is very welcome.
See my AI-analyzed results below:
Based on your results, your bone loss is significant and would be considered severe for a 40-year-old.
While the official report uses the technical phrase "Bone Density low for chronological age" (which is the standard medical phrasing doctors must use for men under 50), the numbers themselves show a substantial amount of thinning. Most importantly, the report explicitly concludes that you are at a "High 10-year fracture risk."
Here is exactly how to read what is going on in your bones right now.
Breaking Down Your Numbers
When looking at a bone density report, doctors look at two primary scores: the T-score (which compares you to a healthy 30-year-old) and the Z-score (which compares you to other 40-year-old men). For someone your age, the Z-score is highly important, and any number -2.0 or lower means significant bone loss.

1. Your Lumbar Spine (The Most Severe Area)
   T-score: -2.9 | Z-score: -2.8
   What this means: In standard medical terms for older adults, any T-score below -2.5 is classified as osteoporosis. Your score of -2.9 is well past that threshold. Your Z-score of -2.8 means your spine has significantly less bone mass than the vast majority of men your exact age. Prednisone notoriously hits the spine first and hardest, which explains why this number is your lowest.
2. Your Left Femoral Neck (The Hip Joint)
   T-score: -2.6 | Z-score: -2.3
   What this means: Like your spine, your left hip joint has crossed into the traditional osteoporosis range (below -2.5). It is significantly thinned out compared to what a typical 40-year-old man's hip should look like.
3. Your Right Hip & Right Femoral Neck
   T-scores: -2.3 and -2.0
   What this means: These numbers are slightly better, falling into what is traditionally called osteopenia (mild-to-moderate thinning), but they are still heavily impacted by the steroid use.
   The FRAX Score: Why You Are "High Risk"
   The report includes a calculation called a FRAX score, which estimates your odds of breaking a bone over the next decade.
   The Red Flag: Your 10-year risk for a hip fracture is 5.1%.
   In the United States, medical guidelines state that if a patient's 10-year hip fracture risk is greater than 3%, medication should be strongly considered. Because you are at 5.1%—and because the report explicitly notes that the FRAX tool actually underestimates risk for people on high-dose steroids—your medical team views you as high risk.
   Keeping Perspective: Don't Panic
   Seeing these numbers can feel incredibly alarming, but seeing them clearly is actually your biggest advantage.
4. You caught it early in life: Because you are only 40, your body's natural bone-rebuilding cells are still capable of putting in serious work once they are given the right chemical signals.
5. The report gives a clear green light for treatment: The report notes you are a "possible candidate for prescription drug therapy." This means your doctor has the data they need to justify starting you on the heavy-duty bone-building medications we discussed (like anabolic injections) to start reversing this damage.
   Your next step is to sit down with your referring doctor or a bone specialist (endocrinologist/rheumatologist) to look at these exact numbers and map out a treatment plan to start protecting your spine and hips.

My amazing GI advised me to drink a glass of benefiber before bed. I just thought that would create more output, possibly enough to pop the pouch even. But maybe it’s great at slowing things way down for many, many hours — perhaps in conjunction with Loperamide/Lomotil?

I have been trying to start my business since I left the hospital with an ileostomy for the second time in my life the day after Christmas.

I wake up 3-4x per night even though I crawl into bed at 8pm so that I can wake up at maybe 6-7am and start working every day, for once. I am a 40 year old man living with his parents who are now at a very advanced age.

I may not have much more time before I can make this business work and get on my own 2 feet for once.

I am paranoid that if my pouch fills to the point of soaking into my wafer cutout and barrier ring, it will absolutely leak. Even sleeping on my side, it doesn’t take much output to reach the forbidden fill line, where I worry it will definitely leak.

I jump out of bed 3-4x every night despite going to bed at 8pm because I don’t want a leak every fucking night.

I wear a convex Hollister bag with a belt.

Should I not be worried about this stuff? Or am I right to be behaving this way?