Community Forum

 I was diagnosed two weeks ago with Ulcerative Colitis along with a nine day stay in the hospital.   I'm still having bloody diarrhea several times per day, and am on Steroids and Asocol (2400 Mg twice per day) and a Mesalamine enema at  night.

I'm encouraged to find countless different types of natural remedies as well, which I think I can try without affecting my medicine. 

My question is if anyone has had promising results with probiotics, aloe vera gel, Omega 3 pills or Boswellia root?  Are there any others and can they adversely interact with prescribed medicine?

Also - I hear that bread can be an irritant.  I hate to hear that since I love bread, but wonder if anyone has had success in cutting out wheat.

 Reply posted for brodiereese.

 hi,

yours is the first response i have seen that mentions collodial silver. i have been taking it since the beginning of jan and i swear my pain is almost non exsistent compared to the 40 yrs of suffering i lived through before i started silver. starting seeing a homepath out of desperation. my primary doc thinks they are "witch doctors" or something to hear her tell it. she literally flipped out when i told her i was on silver. told her my results speak for themselves. have lowered my dose but still take it when i feel i am headed for a bad (painful) episode. also on oreodaphne which is definately helping as well.  am still totally dependent on asacol which I hate but its better than bleeding to death.

would like to hear more about your experience with silver and other homeopathic remedies or supplements. what/who turned you on to the benefits of silver?

 Reply posted for brodiereese.

Hello, our 12 year old son was just diagnosed with UC.  I am so grateful for your post on aloe vera gel.  Can you tell me how you have been lately.  We are looking for alternatives and any information would be very appriciated.

I wanted to tell you that your post about not taking medication and being determined to treat youself naturally was wonderful.  I do not know you but it is obvious you are very strong and I send you all my strength and ask God to bless you for your courage. 

 Reply posted for KeetnaKurk.

 hi go ahead and have your colonoscopy done  i got sick in dec and kept fooling around guessing what i had until my potassium dropped to a dangerous level and i had to go to emergency room for potassium the at e.r. helped me get in with a gastro and i have ulcerative colitis  the first medicine they put me on was not very good for me I think i actually got worse Lealda  but i hear it works well for others  now im on 9 yellow capsules a day and 1 suppository at night and im starting to feel some better  just keeping my fingers crossed  see ya

 Reply posted for sueymac.

 Sorry sue, I thought your son was the 14 year-old . Anyway, the link to the diet I posted said you can eat oatmeal. Oatmeal is not recommended for  those diagnosed with Crohn's.

I know it seems like a gluten free diet takes away everything we love. Heck the average grocery store is stocked with 80% of food filled with gluten, highly processed sugars and chemicals and tons of trans fats.

This diet takes some getting used to. Besides the benefits of improving crohn's disease, this diet will produce peak athletic proformance! I be your son will love that aspect of the diet. (did I mention I'm a personal trainer?) 

Eat more food, mostly fruits and veggies!

Blessings,

Tishku

 Reply posted for living with cc.

 I initially was given Asacol and it made the diarrhea and cramping worse.  I was then given Colozol and I had the same reaction.  I continue to be on Prednisone and waiting to see what the next drug will be.  I'm new to all of this and it continues to be confusing what is going to work.

 Reply posted for brodiereese.

Wow - this discussion group is very useful.  Thanks for the input.

Brodiereese - do you take Aloe Vera Juice or Gel?  I've read that juice may not be effective, and others say that it can actually cause diarrhea.  I've been having trouble finding gel though in the store, although the juice is carried at the grocery store. 

 Reply posted for Chris.

 I was diagnosed w/ u.c. a month and a half ago. I was devestated, to say the least. I myself have certain food addictions that you have to avoid. I had to sit in the bathroom for  hours at a time. My doctor suggested steriods, I declined. I have not taken any prescription drugs for this and refuse to do so until all my resorces have been exhausted. I have two ounces of aloe vera gel, I drink it with my muti vitamin and 1000mg of fish oil. Every morning. I eat things high in omega 3's and still eat bread nothing with bleached flours, I dont eat red meat, have caffine or chocolate. I take a lactase enzyme if i am going to indulge in dairy.

The first2 weeks after i was diagnosed i drank the aloe with the multi vitiman. In the afternoon i took two acidopholus after lunch. at night before bed i took two garlic pills one probiotic, two teaspoons of colloidal silver and one fish oil pill. I did that for two weeks straight then just down to the aloe and fish oil when my symptoms subsided. I will tell you this i eat bread have only had one bad day(too much dairy) and flew on vaction with two kids under two and was never sick. I get mild cramping here and there but nothing like the god awful pains we know very well, I am improving more everyday. It cant hurt to try it.

 Reply posted for dayflowr.

 I've had Crohn's since 1979, and a flare-up can make me cranky and unreasonable. It's not uncommon for us Crohn's patients to feel frustrated when the pain and fatigue wears on. And yeah, I don't like the high cost of meds, either. If he's not on generic stuff, maybe talk to the pharmacist about what's out there, or the doctor's office, if you can.

My poor hubby is usually pretty patient with me when I'm not feeling my best, and bears with me when the Crohn's makes me cranky, though being female, I don't mind telling him when I don't feel good.  Your hubby sounds like a typical guy, thinking he can master this all by himself. I know when mine's sick, with a bug for example, I offer him what help I can, then just give him his space. Other than learning to make low-residue foods, and encouraging him to take his meds (not nagging), it's hard to do much else.

 Reply posted for sbrierty.

 You just described my experience with Pred. perfectly - I had the same exact experience, I was just in the hospital for 10 days in January and was on 60mg of pred a day - now I'm at 10mg a day and have had 2 doses of Remicade. I get to come completely off April 2nd when I get my 3rd dose of Remicade. Anyways, I also couldn't sleep and ate all day and still have moon face, I also heard things - I know it sounds strange, but I would hear these awful noises that would wake me up, did you experience anything like that? I don't anymore, but I did when I was on a higher dose. Also, my knees are pretty shot from all this and I was even thinking about getting a cane! Going up stairs is difficult as well as getting up out of the seated position. I thought this was from the pred, but my doctor said it was from the disease - what have you heard/found out?

 To respond to Chris:

Wheat did irritate me which sucks because I love wheat bread and pasta, so right now I can only tolerate white bread. I also drink aloe water - that seems to help soothe everything, everyone should drink 4oz. a day, not just people with digestive problems, it really is good for you. Other than that, I eat a lot of fish and for now cooked vegetables. I know they're not as nutritious as raw veggies, but I can't tolerate anything raw yet (except cucumber with the seeds taken out). I can tolerate cantaloupe and honeydew, both of which are supposed to be very good for your digestive tract. My naturopath said the best time to eat melon is in the morning on and empty stomach and try not to take any fluids with it. I have heard that B12 and fish oil are recommended, I have them but I'm also on a lot of meds and I don't want to add any more things into my system just in case I have another relapse - it will be easier to tell what I respond to and what I don't. Once I'm totally in remission I will probably take the more natural route for maintenance, but for now I HAVE to be on these meds.

 Reply posted for Chris.

 I have UC and have been on and off of Prednizone at various doses from 10mg/day to 60 mg/day for two years.  The doctor's only warnings were 1) Don't stop taking it unless we tell you to, and 2) You might gain a little weight.

I wish he had been a little more up front.  For the first few weeks it played havoc with me.  I only slept a few hours a night, and I was up every morning by 4 am (being in college it was a good time to get some undisturbed work done).  I was hungry ALL the time.  I went from having no appetite before I was diagnosed, to eating all day long.  The worst part is that I would eat but not ever be full.  I went from 140 lbs when I was diagnosed, to just over 200 lbs less than 6 weeks later (that's not an exaggeration).  I also experienced all of the other common side effects, none of which are fun.  Joint pain, and swollen round face and neck (moon face) made me look like a completely different person.

On the bright side, the drug did wonders to get my symptoms under control, and those side effects were definitely mild compared to the problems the UC caused.

I was put on Remicade, and initially it was a miracle.  My symptoms disappeared, and I was allowed to taper down and eventually come off the prednisone completely.  This lasted for almost 4 months, and in that time I was able to get back into the gym, get my diet back under control, and lose some of the weight.  Weight loss while on the steroid was nearly impossible, and even if I dropped a few pounds, the swollen face still makes you look heavier than you are.  Since then the Remicacde has stopped working, and I'm back on the steroids.  I've noticed that this time around the side effects are a lot less dramatic, but so is the effectiveness.  The swollen face look is back, but the sleep deprivation and mega appetite are less apparent. 

Hope that's helpful!

 Reply posted for Chris.

 A lot of people online here have mentioned fish oil capsules as helping  a lot.  They have lots of Omega-3, and I hear it helps lower inflammation. I've been taking them for years and my Crohn's is doing better than before. I've never tried aloe, but I've read it's better used externally than taken internally. I think "People's Pharmacy" online said it contains something that's like latex, and can mess you up inside. Even the kind that's supposed to have that removed might not really have it removed. So you might want to be leery.

Take care, hope you get better.