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Ulcerative Colitis
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Posted 1/27/2015 6:27 AM (GMT 0)
Hi Everybody,

I am a mother of a 22 year old girl who is affected by ulerative pan colitis at the age of 20. she had 3 major flareup, the lastone in dicember 2014, the bleading of 20 motions a day was difficult to stop with cortison, Mesalazena ect. it started reducing at the introduction of cortisteroids and Asacol 4g rectal foams. she is still on these meds, and on a filtered chicken broth diet. only white and once a week red meat due to anemia. little carbs and no veg or fruits.
her second colonscopy is fixed for 2 feb, yet the doctros have said her condition is serious, she needs immunosurpressants and an eventual colectomy, latter which my daughter is catogorily refusing.

we are desperate as parents, we reside in Italy, as parents originating from Sri Lanka, upon my daughter's request we are seeking for Ayuvedic treatment in sri lanka, but we are interested in getting openion , personal experience also in India and in other countries with this therapy.

Has anyone ever got cured from this illness with any kind of treatment???

Please help us.... Thank you for reading. Daisy.
Posted 1/27/2015 9:52 AM (GMT 0)
Plenty of people go into remission. No one really gets cured. Without surgery you need lifelong treatment.
Posted 1/27/2015 11:49 AM (GMT 0)
Daisy, sorry to hear about your daughter. My parents are from srilanka too. Have you tried prednisone. I guess you can try Ayurvedic treatment top of regular meds but always follow doctors instruction to get quick relief. Some suggestions.

1. Eliminate wheat/ gluten if possible. Use rice instead. Cooked in traditional way with lots of water (not in rice cooker). Pour the water out. so it's easy to digest. Put some turmeric in rice. Turmeric is anti inflammatory.
2. Eliminate diary.
3. Why don't you try fmt at home. Read powerofpoop website. I haven't tried it but there is a lot of people got relief from it.
Posted 1/27/2015 12:33 PM (GMT 0)
Sorry to hear about your daughter. Sounds like she is hanging in there. I recommend using the search feature for things like LDN, slippery elm, VSL, turmeric, paleo diet, gluten elimination, probiotics, resistant starches, whey protein, kefir, etc. You will find many resources to help you on this journey. While ayurveda has it's merits and offers many anti-inflammatory benefits, it is a stretch to say that it will "cure" the underlying microbial imbalance.

Has anyone ever got cured from this illness with any kind of treatment???

Yep. If we are being technical about it, people have been cured of the disease. Look up the Borody case reports on fecal transplants. Also, if you go to thepowerofpoop.com you'll come across some patients who no longer have UC pathology and are not taking any medications. One of them occasionally drops by to posts here. While FMT does not work for everyone, it is the closest thing to a cure. Just wanted to give you some hope.

The recent medical literature suggests that UC and other autoimmune diseases are the result of gut dysbiosis. You might want to look into this more.

Wishing you the best.
Posted 1/27/2015 12:38 PM (GMT 0)
Immunosuppressive medications are fine, and have helped many of us here. If she refuses traditional medications then it only prolongs her suffering. What about immunosuppressive medications scares her?

Only 25 percent of uc patients require surgery, perhaps your daughter is one of the 75 percent that don't. It gets frustrating and hopeless at times, we've all been there while struggling.

Alternative medicine is fine, but please use it with traditional medications, not in place of them. Uc is a chronic, life-long disease where the immune system attacks the lining of large intestine. It's a constant attack that requires maintenance medications for life. The first 5 years after diagnosis are usually the roughest, when the disease is the most aggressive in spreading in extent and severity. Hang in there, once she finds the right mix of medications she'll recover.
Posted 1/27/2015 3:04 PM (GMT 0)
Hi Sweety5,
guardian7,
Ipoop,
Thank you all, so much for your replies, it is very supportive and feel good that i am not alone.
I went through powerofpoop,
and had a look at FMT totaly new to me.

sweety5, my daughter is on mesalazena no perednizone is similer i guess? anyway i am making a list of all the possible things i gather to talk to doc. she cant digest anymore tumeric as she burps continuosly after eating them.

Guardian7, immunosupressives frightened her and us for the fact that she will be vulnerable to any other diseace when her immune system is suppressed??

Ipoop - thanks, yes will keep in mind, ot to giveup her medicine.

tobe frank it is a hope that i seeafter the first 5 yrs things get a bit better. xxo to all.
Posted 1/27/2015 5:31 PM (GMT 0)
Is she taking an oral mesalamine or only the foam? If her disease is throughout the whole colon she may need to try that. Immune suppressant drugs are also an option if the mesalamine fails to put her in remission. I have been taking them for years and have been doing great! A couple very small flares (rectum only, no diarrhea, and treated with a rectal mesalamine), and I don't seem to get sick more than anybody else. That said, if she goes this route, the doctors should be keeping a close eye on her with bloodwork and she should make sure to get her vaccinations.

And turmeric is also available in capsule form. That could work a little better.

Also as for diet, it helps some people and not others. I, for instance, feel great if I eat lots of cheese, potatoes, and milk (these all slow down my bowel movements too), but other people have a lot of trouble with those (they could cause diarrhea in some)! She should start keeping a food diary (maybe when she's a little more stable?) to keep track of what bothers her.

Good luck!
Posted 1/27/2015 7:23 PM (GMT 0)
Thank you Elephantpipe,

she is on Mesalazena 1200 mg tablets x3, rectal foam asacol. deltacortene.

now our fear is, the miniute she gets a flu she got the flareup, if she gets immunesupressant drug, her whole immune system while be off right?
so you say, with vaccinations and blood work she can go on?

Infact we need to go to a centre for uc in a big city and i need to ask all these questions.

also today thanks to forum members help i read for the first time about FMT, which lit a hope in me, need to find out more, and in italy if it is done.
thanks for the tip for tumeric capsules and food diary.
on the second feb, the colonscope will be done.
oh so sorry i realised that you were diagnosed with it at 15 yrs..... sigh...

all your help is appreciated so very much. a big hug to all.
Posted 1/28/2015 1:34 AM (GMT 0)
Daisy,

I also wanted to say take some vitamin D. Most likely she is deficient in it.  about ayurvedic treatment, I have seen alot of icurable are cured by Ayurvedic treatment, but not with colitis. As you would know UC is not a common disease in india or Srilanka. They are protected by environment and plenty of sunshine. I have coworker she uses ayurvedic for her ibs. She says its helping her. she says the the meditation and yoga she is been asked to do by her ayurvedic doctor is what helping her more than the medicines. you can google yoga positions for colitis and do it at home. 

FMT probably not available in Italy but you can do it at home using a healthy donor. Her dad or brother is most suitable. But its important to test their stool cultures for parasites before doing it. Please use power of poop website and youtube for advice. There is an active thread in healingwell aswell by sharron19.

I also suggest, if she doesnt have acid reflux try eating idly, dosa.. These are femented foods and easy to digest.

Post Edited (sweety5) : 1/27/2015 6:38:12 PM (GMT-7)

Posted 1/28/2015 4:42 AM (GMT 0)
Hope92,
Glad that you found this forum and reaching out.
My DD is the same age as your's.
My advice is-
While on steroids slowly put her into a suitable anti-inflammatory diet.The most common ones are Paleo diet and SCD.
Home made broth is very soothing and healing for many.
Keep a food journal and record the symptoms so that you can identify the safe foods.

Hope her GI had checked for C.diff. If not ask her GI to do that.

From what I gathered ayurvedic treatment takes time to show the results.

If your DD don't want to be on immunosuppressants, discuss with her GI to try some other mesalamine meds. For my DD ASACOL HD didn't work while on steroids. But lialda did.

I am not sure about probiotics while flaring, but DD's GI recommended VSL 3 at that time.

There are lots of alternative treatments that brought remission- but no guarantee that it works for all.

The ones I kept in mind are the spinach/sunflower diet,Supplementation with Oregano oil,Grape seed extract, Manuka honey, LDN and my top one is Fecal transplant. All these are discussed in this forum.Do a search if interested.
best wishes...
Posted 1/28/2015 5:01 AM (GMT 0)
Hi, I have tried homeopathic and ayurvedic before resorting to prednisone to improve my son's condition. One doctor friend said it perfectly when I was hesitant on starting prednisone regimen and trying ayurveda - " he said Ayurveda and Homeopathy treatments work for level 1-2 diseases, this is a level 10". So I would strongly suggest not wasting precious time on ayurveda - it didn't work for my son and we wasted 2 months in the process of healing. Go with prednisone, and you could go with upgraded maintenance medicines (Remicade, etc.) if the doctor advises. Prednisone is temporary to get you healthy but during the course you have to start a maintenance treatment that will keep your daughter in remission.

I also agree with another post here - stop gluten and dairy - even if temporarily till you get past the flares. For my son, even red meat triggered his symptoms so we stick to chicken, turkey, fish.
Posted 1/28/2015 7:17 AM (GMT 0)
Hi sweety3, Bloom93, BV,

Thanks alot, yes I am very much interested in FMT, and looking for all the info.

will eliminate gluten.

it is a releif to know wthout going in to colectomy there are other things to try.

unfortunatley when my daughter mentioned about ayuwedic treatment the GI who has no idea about it panicked and was furious. the suggestion of colectomy i feel is to put on guard, though it really gave my daughter a very frightful thought , she went for that visit alone and came home in such a desperation..., which was not really the behaviour i expected from the GI, cos you never know how a 22 yr old can react on such a notice.
anyway now we are trying to see it with another point of view and it made me open doors to many new things and options through this forum too. so shall see it as the glass half full and not half empty.

my D, stopped taking vit d suppliment as she said it started making her skin split near the eyes. but i think she should go for it.

for FMT, i saw the ROME policlinico gemelli is doing it, but didnt understand if its only on experimental state still. will enquire.

for Idly , dosai, will ask the indian store how to make it as i do not know.

Have a great Day all of you . :)
Posted 1/28/2015 11:40 AM (GMT 0)
Well GI's in general aren't really open to alternative medicine. I also think she should just go on the immunosuppressive medications, they work for many here. Side effects are statistically rare (all 6 in 10,000 odds or 0.06 percent). And try your ayuwedic treatment, and others at the same time.
Posted 1/31/2015 1:09 AM (GMT 0)
Thanks hope, I have adjusted very well and I am sure your daughter will be able to do the same! :)

The bloodwork is to make sure her liver is functioning properly while she is on the immune suppressant and is done about every 3 months for me. It's a quick blood draw and doesn't take much time. As for the flu, during my first flare I caught it too! It made everything so much harder. But since then, I get colds just as often as a "normal" person, and I usually get vaccinated to be safe. On the occasions I have caught the flu, I've been all right. But that's my personal experience. :)
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