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

My wife just gave birth to our son 8 weeks ago. He's perfect and healthy and great.

My wife has ulcerative colitis, which up until just before the son was born was in remission. I mostly credit the specific carbohydrate diet for helping her with that.

about a week or two before he was born she got some very early symptoms of a flare-up, but she had also broken her diet a bit, so she got strict again.

The week son was born, my inlaws came to stay for 2 weeks and they added an enormous amount of stress to our house. Combined with her hormones going crazy and her immune system kicking back up, she started to get a flareup.

After my inlaws left, my mom came to stay with us for a month. My mom is super nurturing and understanding and has helped a lot. Within about two weeks, her flare-up started to subside some and day by day she seemed to be improving very slowly.

We don't know what it was, but suddenly this week she's taken an about face. Tuesday she was a little constipated but okay. Yesterday she had softer stool than she had been, and there was a bit more blood mixed in than there had been in the previous week.

All of the sudden today, she's had 5 loose stools with a lot of blood, abdominal spasms, and just overall heavier symptoms with almost no run-up to them.

She's become extremely attached to breastfeeding and is absolutely a mess whenever she thinks about having to stop, but I think has accepted that it may be necessary for her to take drugs to help her, and we will need to switch to formula for that time. She's also not wanting to have a GI insist that she gets on Remicade or Humira, since there's substantial side effects from both, the latter showing possible birth defects, and we will possibly have another child in the future. She's also allergic to asacol drugs, and 6MP didn't help her. She basically considers prednisone to be the devil after having been on it a few times and really really doesn't want to get on it again.

Right now, I've got a cold that I don't want to pass to either her or the baby, so I'm trying to stay away as much as possible and letting my mom help, but it's absolutely tearing apart my heart. This year, since we found out she was pregnant, I've developed some anxiety issues, and while I'm trying to "be strong for her" I'm going to have a hard time keeping it together if this goes on long.

At this point I'm willing to do whatever it takes to help her heal. Do any of you have a gastroenterologist that helps you deal with the disease without trying to force drugs on you? If we have to fly anywhere in the US (or maybe even overseas)...I'm not really leaving options off the table right now.

I don't know her full regimen, but she's taking aloe, probiotics, prebiotics, I think l-glutamine, and mixing that all into a smoothie with RawMeal powder, banana, strawberry, and a bit of almond milk.

Post Edited (The Logos) : 2/22/2014 12:51:29 PM (GMT-7)

Hey, welcome to the forum, and congrats on your new baby.

First things first, your wife will NOT have to stop breastfeeding in order to treat her flare.

The best thing she can do, aside from the other things that you are already doing, is to get mesalamine enemas and use them every day. I know you're "anti pharma," but this is a safe and very effective med, assuming she is not intolerant of mesalamine, and should go a long way toward resolving this flare.

There is no risk to the baby from mesalamine enemas. In fact, she could take mesalamine oral meds in addition to the enemas and there is no issue there either (in studies of medications and mother's milk, mesalamine has been shown to be present in small amounts of breast milk but presents no risk to the baby aside from a small likelihood of diarrhea. I challenge you to distinguish a breastfed baby's normal pasty poop from diarrhea, but I digress....see http://www.infantrisk.org for a good resource on meds and breastfeeding).

I hope your wife gets better soon.

momto2boys said...
I would urge her to be seen by a dr before she gets too much worse. I don't know if slippery elm bark powder can be used while breast feeding but you should also look into that.

Do you happen to have a doctor that doesn't push the meds? None of the guys in town that we've looked into take any sort of "holistic" approach, they just say she HAS to be on remicade or humira ASAP.

When the flare first started to ramp up about a month ago, she was having extremely hard stool that was tearing her and she was basically terrified to poop. I heard her screaming from across the house because it hurt her so badly, which of course made me feel useless in that I couldn't help her at all. In order to soften things up, I found mention of slippery elm, which she took in some gelcaps from whole foods, and that seemed to help her, along with lots of steamed spinach. At this point, however, I'd be a little concerned about doing too much elm if it's a stool softener and she's already very soft. Any thoughts on that?

I doubt you'll find a traditional GI who won't want to use meds; that's how they're trained. Even if you lucked out upon an open-minded GI, he or she probably wouldn't know what else to do.

If you are serious about this, then functional medicine is perhaps the way to go. Here is a case study of a 29-year-old female with UC: www.metametrix.com/files/learning-center/case-studies/metametrix-case-study-29-yr-old-female-ulcerative-colitis.pdf

A minority of people are intolerant to mesalamine: I was one of them and could not take any mesalamine drug in the past to save my life. It's unfortunate if that's the case, but not everybody responds well to the drugs unfortunately.

I had bouts of extremely hard stool during my reign with Crohn's colitis. I used Miralax to soften it up. On a couple of occasions when it got really, really bad, I used a glycerin suppository: it's a bit grim but it does really work. I don't know about slippery elm: I never tried that.

Meanwhile, though, I've just had a bit more of a think about what you said in your last post. Why are these GIs saying your wife needs to be on Remicade or Humira ASAP? Has she had a recent colonoscopy? Maybe I'm just too used to the UK, where you could be dying before a doctor here would start showing concern, but I'd be worried about my own disease if a GI was insisting I needed to be on a biologic.

Edit: Yeah, I never thought of a steroid enema >_>. That sounds like it might well be worth a try.

Hi, you've got a lot going on life-wise so not surprising your wife's UC has flared. Some people think hormones play a part but the stress alone could have caused it.

Rx meds have never helped me (although I'm not allergic to melamine). I agree with kazbern for her to use a steroid enema. Totally different than oral steroids because they are "topical" rather than going into the bloodstream, just a small part might. She can always quit if they cause issues but they could be the answer.

Finding a holistic doctor that knows about UC will be extremely hard. I think this forum could offer more safe suggestions. My own suggestion would be continue diet modification. SCD was OK for me but there were legal foods on SCD that kept me from remission. When I kept a food journal it was clear I had to remove more foods.

Has she tried a Paleo-type diet, very healthy with protein and veggies? Grain-free and dairy-free.
I also suggest eating resistant-starch foods (cold potatoes such as potato salad and cold rice like rice pudding or sushi). Resistant starch is not Paleo but I and others have found it a good thing for gut healing. You can do a search on this forum for "resistant starch" for discussions.

Right now make sure she has lots of chicken broth and bone broth for nourishment.
I'm a big believer in veggie juices and low fiber foods so gut isn't irritated. (Not an 8 oz. glass of veggie juice lol, small amounts are good).

Best wishes on your new baby.

NiceCupOfTea said...

I had bouts of extremely hard stool during my reign with Crohn's colitis. I used Miralax to soften it up. On a couple of occasions when it got really, really bad, I used a glycerin suppository: it's a bit grim but it does really work. I don't know about slippery elm: I never tried that.

Meanwhile, though, I've just had a bit more of a think about what you said in your last post. Why are these GIs saying your wife needs to be on Remicade or Humira ASAP? Has she had a recent colonoscopy? Maybe I'm just too used to the UK, where you could be dying before a doctor here would start showing concern, but I'd be worried about my own disease if a GI was insisting I needed to be on a biologic.

Edit: Yeah, I never thought of a steroid enema >_>. That sounds like it might well be worth a try.

She tried a mineral oil enema at one point, but had issues getting it in since she was in so much pain. Thankfully the hard stool is over for now, so I'm hoping that's not an issue again for a while.

She was in the hospital in late 2012 after a bad flare up ended up with some kind of infection as well (not c.diff according to the cultures). After she recovered some she got a colonoscopy and the GI said it was awful terrible super bad and he can't believe she's walking around and on a scale of 1-surgery she's at a 9. She took prednisone for a bit and stuck to her diet and recovered within a month or two...so it can't have been THAT bad. Her basic thought is that docs have no concept of holistic medicine and just try to take the "easy route" even though there are all kinds of side effects. I'm an engineer and my opinion is that the "easy route" is the one that people have discovered after years of research so that you don't HAVE to take the "hard route", but I want to support her in doing what she wants, so after my initial insistence that she gets on Remicade, I just keep my opinions mostly to myself. As long as she keeps herself out of the hospital and understands that there are meds out there that could quickly put her into remission, it's not my place to try to tell her how to treat her own illness.

Pretty much this was my life 3 years ago. I found myself in a sinking into a horrible flare but meds were off the table for me because I had just had a baby.

I would try rectal meds first if I had to go back in time.

I did pull out of my flare (the worst of my life and included signing out of the hospital AMA) and nursed my baby for 16 months. My other children I nursed much longer but I am sooo greatful for 16 months. At that point I couldnt control things with diet anymore and needed to explore some other options.

Tell her to stop eating that protein powder.



You can try strict SCD, but you HAVE TO WATCH for constipation. That is what got me. She must drink lots of water and she must stay on top of the constipation.. Magnesium citrate is very safe. she should take a dose daily unless her stool is loose for sustained periods, im worried she got herself so constipated that now she has d and blood coming around and really needs to get flushed out. Her body is trying to flush something out, flipping from constipation to d, esp after the constipation history.

Have your mom make her chicken soup with well cooked carrots and some sweet potatoes and salt. That is it. a bay leaf would be fine but no garlic or onions. Lots of broth, lots of the veggies, just a little of the meat each meal.

no bananas.. scd INTRO diet

Everyone (I mean everyone) is different in food intolerances so what is bad for me may be fine for her, that's why a food journal is important.

You mentioned SCD yogurt, which I LOVED making and eating. However my gut said otherwise, so it's been on the outs for a couple years now. I can now tolerate more dairy (cream, sharp/hard cheese)but not yogurt, even the best of yogurt.

I cannot now remember every single SCD food that my gut hated but fruit/fruit juices for sure did not suit my gut, even now I cannot eat bananas or many other fruits, just a half an apple, skinned, is tolerated. Almond meal? Too much fiber for my gut.

Fiber, especially insoluble fiber, was a big gut hatred. So no oatmeal, even gluten-free type. Green beans are OK however. I could not pin down a common thread and no particular "name" diet was just right. Paleo comes closest but I eat potatoes with no problems, hot and cold, but cold are more healing. I just love fried potatoes I also eat pecans and walnuts which are non-Paleo (not almonds).

Hope this helps. You sound very pro-active as far as diet. I am lucky too that my spouse loves eating healthy Paleo-ish food. He probably cheats less than me and he is non-UC.

Tonight is cheat night, our anniversary. I home-made a Black Forest Cake (gluten-free flour) with whipped cream and cherries. Heaven on earth and I've only eaten bits so far. I don't do this often but a girl's gotta have a little fun.

PathogenKiller said...
no bananas.. scd INTRO diet

Gonna do the intro foods only for a week. The way I originally read it, I thought the intro diet was just because if people didn't have the whole book, they wouldn't know what foods to eat, so the intro diet was a short list of things to start on. Now that I've read more on it, it's more of a restriction diet to start into SCD for control of symptoms.

imagardener2 said...

You mentioned SCD yogurt, which I LOVED making and eating. However my gut said otherwise, so it's been on the outs for a couple years now. I can now tolerate more dairy (cream, sharp/hard cheese)but not yogurt, even the best of yogurt.

I cannot now remember every single SCD food that my gut hated but fruit/fruit juices for sure did not suit my gut, even now I cannot eat bananas or many other fruits, just a half an apple, skinned, is tolerated. Almond meal? Too much fiber for my gut.

Fiber, especially insoluble fiber, was a big gut hatred. So no oatmeal, even gluten-free type. Green beans are OK however. I could not pin down a common thread and no particular "name" diet was just right. Paleo comes closest but I eat potatoes with no problems, hot and cold, but cold are more healing. I just love fried potatoes I also eat pecans and walnuts which are non-Paleo (not almonds).

Hope this helps. You sound very pro-active as far as diet. I am lucky too that my spouse loves eating healthy Paleo-ish food. He probably cheats less than me and he is non-UC.

We'll have to play around with the yogurt. I've seen a few people now saying it was bad, but a lot of people saying they didn't heal unless they were eating it every day.

She drinks a lot of juice, so I'm going to have her cut down on that...I've been telling her she needs to anyway.

"gluten-free" to me is a waste of time, because so much stuff that's labeled that is in no way paleo or SCD. It's filled with all kinds of ultra-processed stuff in order to make it try to be the original product (bread, or whatever). I'd rather just skip out on bread than try to use "gluten-free" bread.

It does help, thanks!

ks1905 said...
Where is your wife's UC located in her colon? enemas will only treat inflammation in the rectum area.

I think the last time she had the terrible flare up it was pancolitis, but another flare was only left side, I think.

Second the rectal meds. Do something other than the mesalamine ones. They make me worse too. I consider people here the "pros" of this disease so it's the best place possible to get help.