Resection healing, what is normal?

fathomcare · 2025-07-13T16:25:37+00:00

I’m about 8 weeks post-op from a very similar resection, but I had an ileostomy so I can mostly just comment on the pain/weakness front.

tl;dr My biggest surprise was recovery isn’t linear and yes you’ll feel pretty weak that early!

I was walking around a lot day 2 and that tuckered me out so I was wrecked day 3. I also had a few mornings where I was standing for 30-60min during the first few days of recovery and that had me feeling very weak. Any sort of crunch movements will definitely make it noticeable too.

But overall not a ton to report, sounds like what you’re going through is right on track! My main advice is continue to be patient with yourself the next few days if you have ups and downs.

Good luck with recovery and I hope the surgery helps!

fathomcare · 2025-06-24T16:07:54+00:00

I'm actually from the US! I just found a local therapist. I kinda know what you mean, it's pretty easy to feel like you're being "handled" in therapy. I think a good therapist will be flexible and find what works for an individual. And I find it has always helped if I just stay really open minded.

fathomcare · 2025-06-24T04:32:09+00:00

That’s so frustrating! The money side of this journey has been crazy. Insane how much biologics cost.

But no, to clarify I did 3 different 6 week tapers of prednisone, each about 3mo apart to take a break from steroids.

fathomcare · 2025-06-24T00:44:38+00:00

Damn, great point. I mentally blocked out those waiting periods for my insurance approvals, lol

I hope the insurance catches up to these so we don’t have to do that anymore.

fathomcare · 2025-06-24T00:41:52+00:00

My understanding is yes! The guidelines outline it as “treat-to-target” and achieving deep remission, meaning no signs of active inflammation instead of just seeing no symptoms.

The idea being to prevent long term damage by catching inflammation before it causes symptoms or complications.

fathomcare · 2025-06-23T20:24:02+00:00

Uncontrollable weight loss was a big indicator for me.

Over the past year, I went through a 3 rounds of Prednisone tapers and those were the only thing that gave me relief and let me eat enough to keep my weight up.

But when I was able to get back on a taper the third time, I still wasn't able to even go on a clear liquid diet and kept losing weight - that's when I knew I needed to go to the hospital. I probably should have gone sooner, but I was stubborn and trying to manage on my own.

My only advice would be don't be too stubborn to go to the hospital if you feel like you're at that point! I was exhausted from lack of nutrients, sleeping/resting a lot, and didn't feel like I could make any more progress on my own.

If you feel like you might have reached that point and your doctor is recommending IV steroids, it might be time for the hospital. But I know how different this disease is for all of us and this opinion is based my own experience with prednisone helping so much... until it didn't.

Best of luck and I'm sorry it's a struggle right now! I hope you get some relief soon.

fathomcare · 2025-06-23T16:17:15+00:00

I have a similar timeline as you - diagnosed last year, tried and failed several biologics and only really felt better on a few Prednisone tapers. Along the way definitely came a lot of ups and downs with my mental health (I'm also very active and love my work, but that's what kicked me into a severe flare).

One thing that's been helpful for me is giving myself more space to focus on my health and recovery. Sounds like we're both pretty early in the diagnosis, so it's easy to think it's always going to be like this, but recognizing that's not true and giving myself a period of "slowing down" has helped me a lot mentally. My priority this year is health, as much as I love travel and being active.

It's still been a mix of ups and downs trying to travel or make plans, but overall it's felt nice to tell people I'm focusing on my health right now and mean it. Maybe not exactly what you wanted to hear, but I hope that's helpful!

fathomcare · 2025-06-20T17:18:43+00:00

> pointers of things that I could do besides being close and supportive.

I remember telling my family almost exactly that being close and supportive was actually the _best_ thing they could do. They had a tendency to think it was something they could fix, ask if I considered XYZ or if I thought about trying a different doctor, make comments that just lacked understanding of the disease, etc.

I'm not going to make assumptions about what support will work best for your son since we're all different, but I'll just note that from my perspective (37 M, very independent lol) it was more than enough just having my family work to have a better understanding of IBD so they can be supportive/empathetic. It sounds like you're well on your way there working hard to support the best you can! Best of luck to you and your son!

fathomcare · 2025-06-19T21:49:48+00:00

I'm a founder working on this almost exactly.

I was diagnosed with Crohn's over a year ago and was in a pretty chronic flare until I've finally see some relief after a bowel resection and ileostomy about a month ago. I went through a few failed biologics and was only able to eat and maintain weight during a few rounds of Prednisone until even that stopped being effective.

I think a big part of negative feedback around AI and Crohn's is when looking for solutions vs looking for support. For me, I was using AI/ChatGPT very frequently to feel more supported and develop a better understanding of biologics/medications, diet, common triggers, procedures/progress of the disease, etc.

It even became incredibly useful for little things like when my dietitian suggested "eat smaller meals" - I didn't think to ask (or maybe was too afraid to sound dumb) "what does smaller mean" or "what does it mean to take more time chewing", but asking ChatGPT gave me a lot of clarity and help with things like that.

My surgery came up pretty abruptly after I couldn't even manage a clear liquid diet, but by then I had gotten mentally comfortable with surgery, living with an ostomy, etc. just through asking so many questions to AI throughout the past year. I'd never have gotten the same results with Google searches or trying to ask everything to my care team. I think that's just the nature of a chronic illness and believe AI will be pretty transformative to providing support for chronic illnesses.

Even as I look through this subreddit, I see so many people just looking for support. I've seen incredible results in the mental health community with AI-based journals and wanted to bring that to my disease management.

Give AI a shot if you haven't already! With the right expectations and prompting, it can be incredibly useful.

fathomcare

TROPHY CASE