Wife has UC, very anti-pharma, looking for advice

Welcome to the forums and congratulations on your new baby!

Does your wife have a GI specialist already who she just doesn't like? Or is she without a doctor? It's hard enough to have a newborn when you're NOT suffering from UC, and while I get that you don't want to take every drug under the sun, you need to find a medical professional to help you. Ask around here for recommendations for your location; I'm in Boston and there are a couple of great practices I can recommend.

If she hasn't had a scope since her last flare, she should get another one. Sometimes, what feels like severe pancolitis is actually limited to the left side of the colon. This isn't the time to guess.

My first suggestion is to try hydrocortisone enemas. Hear me out:

I hate prednisone. I have chronic hives, and while antihistamines usually take care of them entirely, for several years I used to get random and uncontrollable deep tissue swelling (usually on my face). My idiot allergist would just throw pred at me and wouldn't listen when I asked for something else, when I pointed out that as soon as I'd start tapering, the swelling would come back. Since I ditched that doctor, I refuse prednisone for anything chronic, and one reason I love my current GI is that he listened to me when I said, "No pred."

However, when 6MP and massive doses of Remicade weren't getting me in remission, or even reducing my flare severity for more than a few days, I decided I wanted to try hydrocortisone enemas (again). I wanted something that would tamp down the inflammation long enough for me to get it under control. It worked like a charm and I hit remission within 2 weeks. The enemas hit the entire left side of the colon, and they aren't absorbed very heavily into the system (compared to the pills). They also tend to work very quickly, within few days.

My second recommendation is to do some legit serious research on biologics during breast feeding. My doctor explained how Remicade is administered during pregnancy but didn't mention breast feeding. However, from the way the answer was framed, it sounded to me like it was entirely safe to breast feed while on Remi. Additionally, as someone who's currently dealing with a Remi side effect (week-long severe fatigue post-infusion, but I'm on a double dose of antibody), I can tell you, it's way easier than having a flare, and besides the temporary fatigue, I've had no side effects. They're serious side effects, but they're RARE side effects.

Yes she could have been that bad, and recovered well. The most important thing to know about UC is that it is unpredictable. Her flares and remissions might not be the same each time. One can have a severe flare and turn it around, as she did. I wish you both well; it must be hard to have a new baby and be in a flare.

Sue

Logos,
Welcome to the forum.
I am sorry your wife is suffering.
Big Pharma didn't work for me.
But what did work was a combo of supplements like l-glutamine, vitamin d3, slippery elm, probiotics, etc....(you can see my sig), Paleo diet, and LDN.

How about trying LDN and the rest?

HillHunter said...
Has anyone mentioned a fecal transplant? It sounds like she might be the type of person who would consider that.

Glad you brought it up (I was thinking it but didn't want to complicate things).

Hmmm, Logos, I'd reeeallllllyy encourage you to email me, and I'll get you in touch with my dad. He knows more about FMTs than probably 90% of GIs out there and that's no exaggeration. He's helped me with this since July and saved my life. I get that she's weirded out, but I think it would help more to hear from a UC patient than a doctor (although, that will help too, of course).

Anyway, email me and I'd love to talk to you about it--especially if she doesn't want the big meds!

Congratulations on your new baby, I'm sorry you have to go through this at the same time. My flare was brought on by pregnancy too and I know how hard it can be :(

Everyone has given some really good advice. As far as diet is concerned, I agree with most of what PathogenKiller already said, so I won't repeat that. Once she feels like she can expand from the SCD intro diet, I recommend looking at the paleo autoimmune protocol http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

Also, this is a great database for information regarding the safety of drugs and breastfeeding: http://toxnet.nlm.nih.gov/cgi-bin/sis/htmlgen?LACT

Is your son sleeping through the night yet? If not, maybe your wife can pump milk and you or your mom can do the night feedings, as sleep is really important at this stage.

I also wanted to mention that L-Gutamine can be constipating, and in my case it actually caused me to flare up when I tried it. Many people do well on it though, I just thought you should be aware of that aspect of it.

laughingduck said...

Is your son sleeping through the night yet? If not, maybe your wife can pump milk and you or your mom can do the night feedings, as sleep is really important at this stage.

I also wanted to mention that L-Gutamine can be constipating, and in my case it actually caused me to flare up when I tried it. Many people do well on it though, I just thought you should be aware of that aspect of it.

Still not sleeping through the night, though I think he may be getting close. He nurses around 9 or 10, then 3am-ish, then 6-7am. Wife really wants to nurse him, because she feels it's good bonding time, and especially now since she sees she may need to stop for a while. Even if I were able to bottle feed him pumped milk, I think she'd wake up anyway so I'm not sure how much benefit to her sleep she'd get. I do try to get up and change him and get him back to bed when he does get up.

She's still having bloody diarrhea right now even with the amount of glutamine she's taking, so that doesn't seem to be constipating her. The doc that she went to before we moved and she sometimes does phone consults told her to get back on glutamine, so she's been taking it. As far as I'm aware, she usually does well on it.

You can maybe start adding in foods, one at a time, and watch for reaction. Keep in mind, some food reactions take up to 72 hours to show (my dairy intolerance is like that, no problems until 48 hours later then wham, major flare!).

I don't think anyone has mentioned resistant starch here either have they? It's not SCD but has shown a lot of benefits to people and may be worth looking into.

Once you find something that works you shouldn't stop, such as the LDN. That's a mistake that many people make, find something that works and then quit, thinking that if you have troubles again then you can just do what you did before. Future flares often get harder and harder to treat so once you find something that works you have to stick with it FOREVER, no matter how many years or decades you have been in remission. UC never completely goes away. It is waiting in the bushes just waiting for you to make a mistake and then it pounces, usually worse than before.

SCD explicitly states that you can't stay on Intro Diet for more than a few days. Especially since she's nursing. That's madness. I remember doing SCD intro and stuffing my face all day without being able to crack 1000 calories.

AIP at least will get her more nutrients.

Has anyone mentioned resistant starches ITT yet?

PathogenKiller said...
Shoot. I forgot the scd had eggs and dairy on the intro.

No eggs, dairy, nuts, seeds, night shades, wheat, grains, spices..made of peppers like paprika.

She has done very well with SCD yogurt :/

We're already on zero grains and gluten, and also zero other dairy than that yogurt.

I'll try to convince her to totally cut nuts and seeds, but almond butter (barney bare...ONLY almond butter without anything else) on apple is one of her go-to snacks.

Also wanted to add at least in terms of her nursing schedule she can sleep through the 3 am feeding, nurse at 6 and then pump. She should be able to produce a good amount in the morning as prolactin, the milk hormone, is highest at that time of day.

Some versions of Paleo allow starches. But this important--do not stick to a "name" diet, stick to foods that don't hurt her gut. That's where I stuck with SCD too long, being very faithful to it and never got past the OK level.

Resistant starch has been good for my gut, at least potatoes have been (not rice for me).
It's important for her to get enough calories and eat meat and potatoes and butter and olive oil as much as possible, all of which in my opinion are good for our guts and good for a body generally.