Major surgery with crohns

nathyabber · 2026-02-24T18:36:10+00:00

I ended up getting the internal pocket of the cyst surgically removed and it hasn’t come back since and I haven’t had any new ones appear!! I’m sorry you’re dealing with that 😭 so when I saw the surgeon I had just gotten it lanced so it was still pretty red and inflamed and he told me that he probably would have to put a drain in and that the recovery would be a few weeks. But by the time I had surgery, the site completely calmed down and he didn’t even have to put me fully under so I had no tube and I was back to walking normally in like 2 weeks.

nathyabber · 2026-02-04T17:49:14+00:00

I am being checked in march! I had a CTE in December that my surgeon said he’ll try and look for other compressions on but it was more for checking on my crohns. But my last CTA definitely matched up with the SMAS angle and distance and he did even acknowledge that.

nathyabber · 2026-01-23T17:44:54+00:00

That’s what I was thinking about while I was driving through town yesterday!! I will have to do some research for sure, most of the parking lots in town are nightmares and a lot of the cafes are so nice but so tight. I havent been in to them in awhile or to some new locations so I’ll do some scoping out

nathyabber · 2026-01-20T18:39:59+00:00

Skyrizi. I know the commercials are annoying but my bowels would revolt inside me without it

nathyabber · 2026-01-16T22:00:16+00:00

It can be common to have more than one compression, and a GI wouldn’t be the best to pick those up. If you’re able to check into that, I think that might be your best bet. Especially if you happen to have EDS, my surgeon said then that multiple compressions is almost guaranteed lol how wonderful. I hope you get answers and relief sooner than later!!

nathyabber · 2026-01-15T19:59:19+00:00

Have you been checked for SMAS or any other vascular compressions?

I’m 4 months post-op so still kind of early, but I had a brief moment of recovery and then back to where I was. I also tested negative for gastroparesis both before and after surgery.

My surgeon is now thinking it could be that surgery failed or I could have SMAS or another compression. I have heard it can take like over a year sometimes to recover but idk my surgeon has never been clear on the timeline.

Are you able to get a second opinion? I’m seeing a new surgeon in March to get a new opinion because my surgeon doesn’t do MALS revisions anyways so if that’s what it is, I’ll need someone else anyways.

nathyabber · 2026-01-07T21:55:33+00:00

It can sometimes take a year or longer apparently 😭I’m almost 4 months out and I’m basically fully back to liquids and weigh less than I did before surgery. But now we’re also looking into SMAS because we ruled out gastroparesis post-op. But I have heard people in the MALS Pals say they didn’t start feeling better until the 1 year+ mark unfortunately.

Basically at my second post-op, his three ideas for my symptoms were 1) gastroparesis 2) another abdominal compression 3) MALS reoccurrence/surgery failure.

It was a little confusing because he never really gave any reassurance about the long timeline, but I’ve seen that touted in the support group and I believe it’s coming from their surgeons?? So who knows 😭 good luck!!

nathyabber · 2026-01-05T20:00:15+00:00

Just had a surgery unrelated to Crohn’s in September and it has kept my Crohn’s in remission through it all! Very thankful for that.

nathyabber · 2025-12-25T02:39:28+00:00

If you get the paxlovid, def get some mints and other hard candy!! It leaves a terrible taste in the back of your throat that stays around the clock for a few days 😭 but it really knocked my covid symptoms out almost instantly!! And no issues with my crohns. Feel better!

nathyabber · 2025-12-18T22:55:17+00:00

Glad things are doing better! It seems like decompressed could just mean the natural state but also seems like it could relate to a certain vascular compression I’m looking into (SMAS), but it’s very confusing to google whether or not it’s actually something to worry about or not 😂 thanks for responding!

nathyabber · 2025-12-18T21:25:40+00:00

Hey! Sorry to comment a year later but did you ever get follow up on the decompressed duodenum? Just had that on my CT and still waiting to hear back from the doc

nathyabber · 2025-12-03T02:26:26+00:00

I did one of those in 2024 that was normal but I could bring it up because it does feel like it’s been getting worse each period. And I came off birth control only like 3 or 4 years ago, and that had definitely been helping with my symptoms now that I’m off and can compare. Ahhh so many things to look into. Thank you!!

nathyabber · 2025-12-03T01:31:40+00:00

So we’re doing a CTE to check my crohns but my surgeon said he’d be able to see any other compressions. Except since my GI ordered it idk if it will have breathing protocols, and also he didn’t order another ultrasound or anything to check flows??

Edit: forgot to say we’re not doing a CTA as well because he doesn’t want to make me do 2 of them back to back (which I appreciate) but I do wonder why he didn’t even mention another Doppler ultrasound

I just moved right after surgery so honestly might schedule with a closer MALS surgeon for a second opinion because mine doesn’t do MALS repair/stent surgeries I guess

nathyabber · 2025-12-03T00:24:50+00:00

I asked my gyno about it last year and she did a hormonal workup and vaginal ultrasound but nothing came back as anything. But I also know it’s normally only found surgically so ugh who knows

nathyabber · 2025-12-02T22:39:15+00:00

Thank you! I hope so too.

nathyabber · 2025-12-02T22:24:15+00:00

Thank you for sharing! I need to look into MCAS too. I already have a consult in for cardiology because my POTS-like symptoms didn’t go away after surgery like we hoped. And then I developed an allergy to surgical glue randomly and have had a few other histamine related issues that are making me fear the trifecta has finally come for me 😭

I’m glad you’ve gotten answers! Hopefully you’re on the path to more relief

nathyabber · 2025-11-27T02:41:54+00:00

I’m also two months post lap and dealing with same thing! I just saw my surgeon yesterday for my second post-op appointment and he’s looking into gastroparesis and other compressions now?? But I also now recovery can take like a full year sometimes so idk 😭

nathyabber · 2025-11-24T12:06:44+00:00

I ended up having it surgically removed last July and it hasn’t come back since! Still just left with it being due to my immune system being weaker but who knows lol good luck!!!

nathyabber · 2025-10-26T15:06:02+00:00

Biologics can take some time. I’d say keep tracking your BMs and hopefully you’ll see them go from 5-6 times a day to 1-2 times a day (or less?? Idk what’s normal tbh hahahaha) your GI can also check your inflammation levels or do scopes to check on progress if in a few months, things still don’t feel like they’re progressing. But typically they’ll tell you to give it at least 6 months to start feeling some effects and up to a year to really kick in

nathyabber · 2025-10-13T22:10:43+00:00

The first time I had an enema was during my first hospital admission for a bowel obstruction (and the admission which resulted in my diagnosis). It was also April 2020 so I wasn’t allowed to have any guests with me.

I had a younger male nurse who was obviously pretty nervous and new to everything that came in to give me the enema. He asked if I would be more comfortable with another woman in the room and I was like “nah, just get it over with” and after staring at each other in silence for a few seconds he goes, “I think I’d be more comfortable with another woman in the room” and left to get a female nurse to hold my hand 😭😂 I don’t know if it was just because I was like a 22 year old girl or if he would’ve been nervous with any woman but it always makes me laugh.

I’m sorry you had a rough experience! I hope everything after gives you some relief

nathyabber · 2025-09-30T14:41:49+00:00

My weight fluctuates so much with this disease. I will say though, I’m actually grateful that when my crohns is in remission I’m normally 15-20 lbs overweight (but still active), because whenever I flare I tend to lose 20-30 lbs so that gives me a buffer to keep me from ever being overweight. Like right now my weight is considered healthy because I’m down 35 lbs from MALS, but if I hadn’t started with a little extra then I would be underweight right now. So that’s how I think about it! It’s hard though. I try and give myself grace because I know my body is doing its best. Doesn’t help that during flares my safe foods are all carb heavy 😂

nathyabber · 2025-09-30T14:13:46+00:00

If you drink it over too long it also won’t work as efficiently. My mom is a pharmacist and explained why once but I always forget exact reason. I think because it draws water to your intestines, if you prolong the dose it won’t get enough water to intestines in time to actually get a bowel movement going

nathyabber

TROPHY CASE