Anyone have Mast Cell Disease?

[one4sorrowtwo4joy 0]

Has anyone here had a gastric sleeve and also has Mast Cell Activation Syndrome (MCAS)?

I just need to know that someone else safely had it done and didn't have a major multi-systemic reaction to the surgery or in post-op. I'm prone to anaphylaxis but I've had other surgeries (knees and shoulder) since diagnosis and with my surgical team being cautious I made it through surgery without having a major reaction.

I previously had a consult with a bariatric surgeon and she said she wouldn't touch me; that it was too risky. But that was maybe three years ago and I'm definitely more stable now than I was then. My pain doctor wants me to get a second opinion so I'm going to meeting with a bariatric surgeon in a few weeks and also meeting with my mast cell doctor.

I was just hoping that someone who it has experience with it could reassure me that it can be done safely.

Concerns I have:

- my diet already has to be restrictive because of the MCAS. I worry about getting enough Protein in when I have to avoid tree nuts and all meat products. I can have milk (lactose free) and eggs.

- I read that my meds have to be crushed or split post-surgery. Is that for forever? I have some capsules that I take that can't be crushed or broken. I also have liquid medication I take that gets diluted I'm about a cup of Water. I use that water to take all of my pills, and there's a fair amount of pills.

- exercise is an issue for me. I've anaphylaxed during an easy yoga class before. I've built up to be able to do seven to ten minutes on a seated elliptical or seated stepper. But I'm not going to be running any 5ks anytime soon. Is it still an effective surgery if my workout options afterwards are extremely limited because of my MCAS?

- if I'm on meds that have caused weight gain for me, is it possible to still lose weight while being on the med? I can't safely go off of the meds unfortunately.

I think I'm just scared to get my hopes up that this surgery could be a safe and effective tool to help me lose weight. I'm 5'4 and 400 lbs. I need help. The likelihood that my surgeon will be familiar with or educated in mast cell diseases is really low and I know that I'll have to do a lot of advocating for myself.

If you've made it this far thank you for listening. Any advice would be greatly appreciated.

[catwoman7 10,846]

I can only answer the question on crushed pills. No, not forever. In fact, I was able to swallow all but two of mine whole as soon as I got home from the hospital. I had to wait about three weeks before I could swallow the remaining two whole.

[SleeveToBypass2023 1,798]

I can't speak to the MCAS, but I can on a few other things.

The pills: I had to crush mine (except for 2 capsules that can't be crushed or broken - I have MS and those are MS specific meds) for about 12 days. On day 13 I could take them without being crushed at all, although I still can't take all my pills at once like I used to.

Exercise: There needs to be some kind of exercise. Walking is the #1 to prevent blood clots and work out the gas pain (break it up and help it go away). It also helps with the weight loss. The other things you can do are total bonuses that will also be great. Never try to do more than you safely and comfortably can, but do try to do as much as you can.

Diet: Can you have cottage cheese (since you can have dairy)? Have you tried avocado spread, non fat refried Beans, mashed potatoes, plain hummus? There's also Protein pudding, protein oatmeal (I just bought them on the BariatricPal website here), and of course Protein Shakes, protein smoothies, and protein flavored water. Also, try Bone Broth (variety of flavors). That also has protein in it. And of course eggs are great, too. There's lots of ways to get your protein in. You may not be able to get off the Protein Drinks like the rest of us can as we move into solid foods and get our protein from there, but you CAN still get your required protein in other ways.