New, with the standard newbie questions. Help appreciated.

I forgot - manuka honey too.

Hi, it hurts my heart as well to think of a child with this disease. I can't imagine going through childhood/adolescence with a disease like this.

That being said...as far as alternative treatments...how are you going to know what works and what doesn't if you do this all at once? It often takes time to figure out what works for the individual person.

I am in the meds + supplements camp. I believe supplements/anti-inflammatory diet can absolutely help but at the same time, as fruitgirl said...the meds can reduce the incidence of cancer. And with a child being dx at such an early age I would think this would be even more important.

But...every person is different and different things hurt and help. So really, it's going to be trial and error for you guys just like pretty much everyone here.

Good luck and feel free to ask any questions!

You're welcome. I'd love to see good, large-scale studies on the alternative stuff, because I also think they could help. Since I'm in such a solid remission, have an almost 14-month-old, and work full time, I just don't have the time, energy, or (honestly) inclination to mess around with them too much. I do take a probiotic and do avoid processed foods (which I did anyway), but other than that, I don't use any alternative meds. Besids, since I am in such a good remission, it would be impossible to know what works.

Is she in remission currently? I'm not clear on that. Do know that there are a LOT of people with UC who get into remission, stay there for years, and only have mild flares. Quincy is a good example of one of those type people! And she's only ever used oral and rectal 5ASAs. I think that there just aren't many of those type on here, because they don't need the support and such.

I hope you find a good therapist soon. FWIW, I took zoloft for a few months after my son was born because of post partum anxiety. Now, whether the (undiagnosed) UC made the PPA worse, or the PPA made the UC worse, who knows, but either way, zoloft was a lifesaver. I was on the lowest dose (25 mg), but it helped me so, so, so much. I doubt I would have handled my diagnosis so well without it. Once I gained remission, I tapered off of it with no issues. So even though I understand your hesitation to use one, do know that you can use it short-term to get through this rough patch. I also was able to access free(!!!) counseling through a program my county had (it got cut due to economic issues) at the time. It was wonderful. Have you looked for a therapist who specializes in chronic diseases?

First, I am so sorry you have to deal with this. I can tell that you are very concerned for your child and searching for ways to help. It is not fun to feel powerless when it comes to our children! My thoughts...I would talk to a doctor before altering a young child's diet too much. As you know, children are growing and need a variety of foods and nutrients to support proper development. Kids need healthy carbs. Also, consider whether you will be lowering his/her quality of life by restricting his/her diet too much. It is hard to figure out what is right as adults and much harder when it is your child. Most people with UC find that diet does not affect it. If someone has IBS, food allergies or lactose intolerance on top of UC (which some do) then diet will affect the IBS which can irritate the UC. For me and many others diet makes no difference. My doctor told me to eat healthy foods but not to eliminate any food groups. He does not think diet makes a difference. I wish food made a difference because then it would be easier to deal and to treat. Against my doctor's advice I tried low carbs for two months and saw no improvement at all. I will not do that again.

I do think that some supplements can help minimize symptoms in some people. I don't think it will hurt to try some of the things you listed above although I would talk to a dietician to make sure that they are all acceptable for a child. Some supplements can do more harm than good. I think that the probiotics are okay for kids in smaller doses. I do not think that you will cure your child's UC and I would not stop giving your child the pentasa. As a parent, I can understand the overwhelming desire to cure this for your child!

Thanks all for your responses. thatfield, many people believe the scd is low carb, it's not, it's specific carbs. I mentioned that my daughter is lowerish carbs but that I don't want to restrict her carbs too much. There are so many differing view on this. In the low carb literature, carbs (especially grains) are a serious problem which cause or worsen many diseases. According to the standard food guides, they are a necessity but there are many questions on the influence of agribusiness on the development of these guides. All I know is that my daughter, prior to being diagnosed, ate a primarily organic vegetarian diet with eggs and dairy. Grains were the basis of her diet and they were whole grains (pasta, sprouted bread, quinoa, etc). In fact, when she was in the hospital and put on a low fibre diet the GI recommended white bread. She was so excited that she called it "cake bread". She'd never seen it before. It broke my heart because I had been doing everything right, as far as I knew. I am now very open to looking at other opinions and approaches. She does have fat and caloires (even carbs) in honey, fruit, meat, full fat yogurt, cheese, butter, nut flours and butters, coconut, avacados etc. I really don't trust doctors when it comes to dietary or nutritional advice and when I mentioned the SCD to the ibd nutritionist she immediately developed an attitude and became very condescending. I believe it's because she is the "expert" who is supposed to advise us and we took some initiative on what is supposed to be her turf. Now she just advises us on her bloodwork results - ie. vitimin/mineral levels etc. I understand your concern though and am always watchful of this. Dr. A, I'll look up the study for you. I was told this by my daughter's GI in fact and I've run across references to it in several places. I'll track it down. It was one of the reasons that my GI was pushing for surgery over remicade at the time, when it looked like the IV pred was not working. Thankfully, it did. I believe she was referring to the longer term effectiveness of remicade and not just the initial response, but I can't say for sure. Fruitgirl, thanks for the advice. We are in Canada and I believe we are able to get free counseling here to but it's very limited and there's a waiting list. I'm looking for someone who does specialize in medical trauma or chronic illness. I know people who have seen such specialists with excellent and even life saving results. It's just a matter of finding one... Also, knock on wood, I think my daughter is in remission though she is anemic so her bloodwork is not entirely normal.

Hi, I can relate to what you're feeling as my daughter has been dealing with almost two years of flaring since she was diagnosed. Her doctor once referred to her UC as "the worst case he's ever seen"--and without a doubt we would have had her colon removed two years ago were it not for the fact that my husband also has UC, which was immediately brought under control with sulfasalazine and a short course of prednisone when he had his first flare 15 years ago. Knowing that he has been able to control his disease for 15 years keeps us hanging on and hoping that her disease can be controlled as well.
I agree with one of the previous posts, you should not start too many supplements and medications at the same time, as you will be unable to tell what is working and what is not. It's difficult to be patient, I know, because you just want to try EVERYTHING in the hope that something will work! I try to give at least two weeks (unless it is obvious that something is making her UC worse, then she will stop taking it immediately), between trying new things. And especially when trying natural substances, it sometimes can take a month or two to see a change for the better, unlike most modern meds, which tend to give a quicker result.
We did the SCD for awhile beginning in the spring of 2008, it did not seem to help at all and was extremely difficult to adhere to. We started the Maker's Diet in January of this year, and noticed a big improvement (she had been bleeding daily for 5 months at that point, within two days after starting the diet her bleeding stopped, then started up with a vengeance three weeks later when she had a remicade infusion. The remicade had really stopped working after the first two infusions anyway, so we stopped the remicade and she improved a bit and the bleeding stopped again.) The Maker's Diet is also limited and difficult to adhere to, but we found it MUCH easier than the SCD!

We take her to an ND as well as her gastroenterologist, the ND has been very helpful. Her gastroenterologist is wonderful, he is totally on board with doing anything that makes my daughter WELL. I agree with you that you will not find huge trials for natural methods as opposed to modern prescriptions, but in a way, something that has been used for thousands of years and is still being used is a bit of a successful trial, no? Boswellia is also on our "to do" list.....planning on starting it at the end of December.

wishingtohelp,
Thank you so much for your response. Your advice to wait two weeks before starting something new is very useful. We didn't actually started everything all at once, it's been four months of researching and adding, but we will be starting the ayurvedic meds soon. I don't know what I expect to happen since my daughter is okay right now but I figure it can't hurt and I do hope (though I know it's against the advice of many above) to get her off of all allopathic meds at some point in the future, though I won't rush this and will reassess this depending on how things go. I'm glad to hear your husband's UC is so well controlled, it gives me some hope! I hope your daughter finds something that works for her soon. I will let you know if I find something fabulous but from your signature it looks like we're on the same page. As for the maker's diet, we are not Christian, and I don't trust Jordan Rubin for many reasons, or HSOs that he sells (is that what they're called? the soil organisms?). I don't know much about the diet but it seems very healthy. I'm glad it had some success for your daughter. I've heard that he was in fact cured by the scd but doesn't credit it for his healing. Who knows. I know his diet has helped many and that's the most important thing. If the scd works for us, at some point I would consider transitioning to Dr. Wolfgang Lutz's diet, which limits carbs to 72g a day but allows any type of carbs within that limit (ie. candy!). He's apparently had great success treating IBD (and many other "diseases of civilization" with this) . We'll also be seeing a naturopath tomorrow and you are very lucky to have a supportive GI. Ours are neither supportive or unsupportive. They just tune out when we say things they don't want to talk about, which is pretty much everything outside of their protocol. I'm learning that that is all I can expect of them. Best of luck to you and your daughter.

Songlady,
Thanks for your response. I'm so glad to hear about your son. I love it when people post things like this, it gives me hope. As I was typing the comment about nutrition and "doing everything right" I was aware that people would pick up on that. Rationally, I know that there are many unknowns and diet does not cause this. But whatever did cause this, her diet at the time was likely not helping. I don't really blame myself for this, but I think it's just a sick irony. That's life (and maybe I blame myself a little, but that's something I have to work on).
Fruitgirl, I didin't mean that I am opposed to anti depressants, I've used them in the past, they've helped and I have no shame in saying that. They are what they are. I have a problem with the docs who just want to write a script with endless refills and that's it. That's not the type of "help" I need at the moment. I'm glad they worked for you and that you are in solid remission.

wishingtohelp,
I've heard about florastor too, i'll look into it as well. did you do the natren with wild oregano oil (jini patel's protocol)? Woo is potent stuff! I tested in myself and could feel it going down for hours! How does your daughter take it? I've used in on my daughter's mouth ulcer and a little patch of eczema on her arm (mixed with manuka honey) and both went away. I hope it (with the manuka honey which both of my kids love though it is PRICEY) can do the same for her on her inside! As for Wolfgang Lutz, he treated hundreds with his low carb diet. According to him, crohn's responds to diet faster than uc, but I think over 90% of his patients were symptom free with diet alone after 8 (!) years, and over 70% in two years or so.

Hi Killcolitis,
We did not do the natren and the wild oregano oil at the same time.....the natren gave her more gas than I ever could have imagined! The oregano oil seems to be beneficial....we just started our second cycle (Jini gives so many warnings in the book about the oregano oil that it sort of scared me about taking it daily, so I decided to try a 3 week on/ 3 weeks off schedule). Did you try to take the oil the way Jini recommends? First, you take a big sip of water and tilt your head back so that you hold the water in the back of your throat, then you have someone drop the oil into the water and you swallow and then chase it with more water. There was a video on her website of her giving the oil to her 5 year old daughter using this method. I think she even put the video on youtube, if you do a search you may be able to find it. The key is, the oil has to be dropped just into the water and not touch your tongue, gums, etc. I have never felt a burn at all.......neither has my husband, daughter or son (yeah, we're all doing this with her to show our support! Of course, if we felt the burn of the oil we may change our minds, lol). I'm not sure which oil you are using, we are using the Oreganol oil which Jini recommends for children because it is not as hot as the Joy of the Mountains oil.
Regarding Wolfgang Lutz: 8 years seems like a long time to wait for results! hehehe
Is manuka honey similar to raw honey? We used a lot of raw honey when we were on the maker's diet, along with maple syrup and maple sugar. Very expensive stuff!

sounds like a great plan, shes lucky to have such good parents. i look at my little girls everyday and hope they dont have to go thru anything like uc. as some one who is just starting to look into alternative medicine i might take somethong from your post. where do i find out more about this indian dr?

One more word about diet (knowing that it's probably one of the most debated topics among us!)
the onset of my UC came after a 3 year period in which I, for the first time in my life, was on a "healthy" diet, mostly vegetarian, whole grains, etc, cooking what my friends called "that funky rabbit food stuff" - so, I do stand by that statement "foods do not cause the illness but can make symptoms worse." Once I gave up the whole grains, nuts, etc. the frequency and bleeding improved some.
That and meds got me into remission eventually.