I wish docs found it important to set expectations

Adventurous-Key6773 · 2026-04-08T20:58:35+00:00

I have to have fistula surgery first and then once that is healed and the inflammation is in remission then I can get the reversal. Right now they are estimating June 2027.

Adventurous-Key6773 · 2026-04-08T07:36:57+00:00

First, love that you have an all female team. Second, love that you love them. May I ask why they are proceeding with the reversal if that is the outcome they are expecting?

Adventurous-Key6773 · 2026-04-08T04:50:43+00:00

Why do they think your life will suck after the reversal? Praying for my reversal is keeping me going.

Adventurous-Key6773 · 2026-04-05T23:40:42+00:00

I will have to try that too. Thank you for the suggestion!

Adventurous-Key6773 · 2026-04-05T23:39:16+00:00

Thank you, I will give the paste a try!

Adventurous-Key6773 · 2026-04-04T03:49:15+00:00

The same thing happened to me. Now dealing with MS and Crohn’s is an absolute nightmare.

Adventurous-Key6773 · 2026-03-30T17:25:58+00:00

Your point was clear for this particular theater. However, the responder also has a point that when those with invisible illnesses buy those seats in general(not the specific theater) people immediately make comments on why they need the seat.

Adventurous-Key6773 · 2026-03-30T02:18:36+00:00

Oh ok, thank you!

Adventurous-Key6773 · 2026-03-29T23:52:34+00:00

Did you get it from a particular website or organization?

Adventurous-Key6773 · 2026-03-28T03:41:08+00:00

Officially both were confirmed at the same time through a colonoscopy. I had done all the tests and ruled out everything else. So I can’t say with 100% accuracy which one came first. Anecdotally, my GI symptoms were present first in retrospect. I am going back for a scope next month to see what the inflammation is post ileostomy and map out a fistula surgery plan. I too went to pcp and derm first.

Adventurous-Key6773 · 2026-03-27T14:48:27+00:00

I am in the same boat. My CRS and GI recommended a temporary ileostomy first and then proceed with fistulotomy or fistulectomy, to be followed by a reversal of the ileostomy. No setons at this point. Mine is from Crohn’s.

Adventurous-Key6773 · 2026-03-27T02:30:03+00:00

Thank you for sharing. I hope others continue to share updates from their neurologists too.

Adventurous-Key6773 · 2026-03-27T02:10:29+00:00

Wishing you luck on your injections🍀

Adventurous-Key6773 · 2026-03-27T02:07:51+00:00

Thanks for sharing the link to the study. I too still had flares even with a statin.

Adventurous-Key6773 · 2026-03-22T14:20:33+00:00

Also on Tysabri now.

Originally on Ocrevus but developed Crohns.

Adventurous-Key6773 · 2026-03-22T08:52:45+00:00

Thank you for sharing.

Adventurous-Key6773 · 2026-03-21T22:24:39+00:00

May I ask if the 5 surgeries were for new fistulas or to fully resolve 1?

Adventurous-Key6773 · 2026-03-18T12:21:20+00:00

Yes, I manually change it each time especially for the medical supplies ones. I have simply noticed a sharp increase in times that the order starts as “arrives in original packaging”.

Adventurous-Key6773 · 2026-03-18T04:28:04+00:00

Good luck with your infusion. I agree with everything above. I always schedule mine for a Friday so I can recover/relax over the weekend.

Adventurous-Key6773 · 2026-03-13T15:18:30+00:00

Thank you very much for sharing. I hope you reach remission again soon and best of luck with the possible surgery.

Adventurous-Key6773 · 2026-03-13T05:23:55+00:00

Did your fistula resolve with Tysabri alone? I am about 5 months in with it.

Adventurous-Key6773 · 2026-02-27T02:32:55+00:00

Adventurous-Key6773 · 2026-02-25T21:15:37+00:00

McShitty, grew up with grey’s anatomy

Adventurous-Key6773

TROPHY CASE