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2nd GI Opinion & Slippery Elm Suggestions

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Ulcerative Colitis
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Posted 10/17/2012 1:42 AM (GMT 0)
So, I went for a 2nd opinion with a GI yesterday. He took me off Lialda and Canasa, cold turkey. He only wants me to take an anucort suppository in the morning and a cortenema at night. He said he "doesn't believe" in probiotics as they are not regulated by the FDA. He also was not that into my diet questions...merely telling me to avoid foods (ie. salad, alcohol, popcorn, nuts) that I already know to worsen my symptoms. I want to be more proactive with this and think outside the merely medical solutions. So, I am trying to reduce my inflammation in a more natural way.

So, Here's my question: I need to do more to decrease my inflammation. I've seen that many on this forum use slippery elm. In what form? Capsules? Tea? Is there a preferred brand? It's shockingly inexpensive, so I'm wondering if I'm looking a the right product. Please advise. Thanks turn

~Cita
Posted 10/17/2012 2:25 AM (GMT 0)
I use capsules but I only use them at night. Slippery Elm coats your insides and makes it difficult for any medications you take to be absorbed. When I took them during the day my Asacols were slipping right through. I'm not sure how much it is actually doing for me. I don't have any concrete evidence on it yet.

I'm a little confused by your 2nd opinion GI. I thought a second opinion was just an opinion. How did it get to the point where an opinion turned into overturning what your first GI did? I also think his opinion of probiotics is a crock. When I was in the hospital taking a high powered antibiotic they also gave me a probiotic at the very same time. When I left the hospital it was on my discharge papers to buy a particular probiotic and my regular family doctor told me this also. So, obviously the medical community does understand the importance of probiotics. Just about everyone in the medical field will tell many to eat yogurt while on antibiotics. Yogurt is a probiotic. I don't think I would put much credence in what this 2nd GI says.
Posted 10/17/2012 3:16 AM (GMT 0)
Hi Gary,
Thanks for the reply. I am following the 2nd opinion because I am not getting any better. My GI has been pushing for Imuran and I am not ready to go there. I've been on the maximum dose of Lialda for 6 months and am experiencing side effects such as headaches and joint pain. Since I have nothing to lose by trying something different, I figured I'd forego my mesalmines and see if I get any better. I should mention this doc is highly regarded and on faculty at Northwestern, but he is very old. He told my husband that's he's retiring at the end of the year ( I wish I would have known that before I went to see him).

I agree with you about probiotics and will continue to use them and eat yogurt. Thank you for the tip about taking the slippery elm at night. I only take zyrtec at night, so hopefully, it won't be a problem.
Posted 10/17/2012 5:29 AM (GMT 0)
I also take slippery elm capsules at night. I take all other meds, vitamins, etc. in the morning.

http://www.vitacost.com/natures-way-slippery-elm-bark

The dose on the bottle is 4 caps but I would experiment with that and see what suits you. I take 2 but I can't remember what was happening with a higher dose... :)

Hope you see some improvement!
Posted 10/17/2012 12:25 PM (GMT 0)
Thanks, Hekela! I am going to get some today. It could be a coincidence, but this morning, I have a lot less blood...I am doing only hydrocortisone rectals and no mesalamine. I hope the slippery elm helps too!!
Posted 10/17/2012 12:35 PM (GMT 0)
I think that sounds like an OK plan to get the inflammation under control. However, I do hope that he plans to switch you to mesalamine-based rectal meds once you're in remission. I personally don't think it's wise to stay on steroid-based rectal meds long term.
Posted 10/17/2012 1:25 PM (GMT 0)
the opinion on probiotics is a croc. drop this guy.

there is plenty of research showing probiotics can help, and even more research showing the gut microbes are part of the total UC picture.

I understand concerns about "unregulated" supplements, but there are FDA approved/regulated probiotics. they are called VSL#3, and if you GI does not know about them, you GI is not fit to be your GI.
Posted 10/17/2012 1:42 PM (GMT 0)
DB...thanks for your post. I agree with you. This doc is retiring in 2 months, so I won't even see him again. I guess I'll have to work with my first doc. She's very nice and seems competent. I will INSIST on a prescription for VSL#3 DS. Why are these docs so opposed to anything but hard core drugs? Am I too cynical to think it's the drug companies behind all of this?

Also, DB..what VSL do you take? How many? They clearly work for you, so please share more. Thanks. :)
Posted 10/17/2012 2:28 PM (GMT 0)
Fruitgirl,
Your comment intrigues me. When I was first diagnosed with proctitis (mild) 2 years ago, I was only put on canasa. That seemed to do the trick. When I was noncompliant
(b/c I felt better), I flared. I truly don't think the lialda does much for me...but I do have side effects. So, do you think it would be possible to be able to tolerate and improve with Canasa (rectal mesalamine) and not use lialda? Does that make sense? Could you tolerate the rectal form better than oral? And, since my proctitis is the first 6" of the rectum, wouldn't a rectal med be the best?

Also,are the side effects of rectal steroids as bad as oral? I don't feel they are..just wondering what your thoughts were. I don't plan on being on these longer than I have to be..I juste need to get this bleeding under control and maybe do a weekly maintenance cortenema. Thanks.
~Cita
Posted 10/17/2012 2:30 PM (GMT 0)
Fruitgirl...I just saw you were expecting Baby #2 in March! Congrats!!! My "baby boy " is 12..I also have a 16 year old daughter and an 18 year old son in college. How do you do it?? Running after little ones with UC must be challenging! Hats off to you. :)
Posted 10/17/2012 2:46 PM (GMT 0)
Cita,
Thanks for the update, I was wondering how it went.
Glad to here you are trying something else. I say you know your body best. Sorry to hear the doc is retiring, hope you are able to find another. You sound so much more in control and able to take charge of your treatment. Hang in there it sounds like you are on your way! My UC is in the lower third of my colon and as of tonight I am done with my 2 weeks of rectal cort suppositories. Fingers crossed. Will be continuing on with the oral meds and my probiotics. So nervous!
Posted 10/17/2012 4:24 PM (GMT 0)
Hi Prayerful,
Thanks for you r post. Are you feeling any better? How many times a day are you taking the cort suppositories? My first doc told me to take them 2x a day and the last one, once. I'm taking 2x a day until I get this bleeding under control. And what oral meds?

My husband went up to our Northwoods cabin (aren't you from Wisconsin?) to put away our boat, so I feel like I'm on vacay....laying in bed reading and letting my body rest. It's nice! I am feeling more positive about all of this...I will get better..I pray we all do.
~Cita
Posted 10/17/2012 5:44 PM (GMT 0)
Hi Cita,
I am only on 1 suppository at bedtime. and taking sulfasalazine 2/day with folic acid. I feel so much better. My bleeding as far as on the paper is gone but still see red on stool. Stools are formed though the color is light.? Ran all of my errands today in case friday is not so good after being off the suppositories. I really am feeling God in control of this so I need to be patient.
Nice that you get a vacation day!!! You deserve it. And yes, I am from wisconsin and my son and his wife just moved to Riverside, Illinois. How funny is that?
Enjoy your day!
Julie
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