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Ulcerative Colitis
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Posted 10/4/2010 8:12 PM (GMT 0)
Hi there,
I'm new to this condition, but had a very intense first-time flare up that landed me in the hospital for 10 days. I've been out for about 2 months and everything seemed to be going really well (on Asacol and Canasa) and was on Prednisone, but since I have tapered off that my symptoms have started returning. Please help with any advice! I'm freaked out about another bad episode, and about going onto other serious drugs.

Can anyone give me advice about diet, natural/holistic remedies that have helped? Also, how does alcohol affect this condition?
Any information would be greatly appreciated.

Sincerely,
Frisco girl sad
Posted 10/4/2010 8:33 PM (GMT 0)
I am sorry you're having such bad luck with this illness. When did you notice symptoms returning? Were you below 10mg prednisone? That seems to be the most difficult time when tapering. You could try using some other rectal meds, a steroid enema or suppository could be more effective than Canasa or even a Rowasa can help deliver the medication further into the rectum if the inflammation goes further than Canasa treats.

I've never had luck with natural remedies. I've tried a long list of supplements, vitamins and diets. I know many people have luck with SCD diet, it is worth a try.
Posted 10/4/2010 10:57 PM (GMT 0)
You can do a search-here or on google-for the Specific Carbohydrate Diet. It doesn't work for everyone but those it works for (like me) are thankful to no end. I never responded to any meds but diet modification gave me my life back.

Alcohol? For me it is very bad although SCDiet allows red wine after you have reached a good level of healing.
The supplements that people take are quite varied and I have tried many and quit many.
Here are the ones that work for me: Vitamin D3, Turmeric/curcumin pill, coconut oil, fish oil, (don't take oil if diarrhea is present), leafy greens like spinach and collards. I drank cabbage juice in the beginning and feel it helped.

Keep a food journal and see how you feel eating food. It might not be immediate, more likely the next day.
I found that protein like meat and eggs were all good. Gluten, flour, grains are bad and that is the basis of the SCDiet.

Good luck. It may take some time to sort everything out and see some improvement. But it's something within your control to do.
Posted 10/4/2010 11:08 PM (GMT 0)
Two months on prednisone may have been too short a time if you were bad enough to have stayed in the hosptial for 10 days. You might have tapered too quickly.
Posted 10/5/2010 12:29 AM (GMT 0)
With regard to natural remedies, I'm taking probiotics (re-establish good bacteria in gut), Fish Oil (anti-inflammatory), Vitamin D ( strengthen immune system and helps with calcium absorption) and a slippery elm/aloe vera/glutamine mix( helps repair damaged intestinal wall). My GP/herbalist also made up a tonic for me that helps reduce diarrhea. Will be trying Vitamin C IV in a couple of weeks to see if I feel better.
All seem to be working ok, but this disease is very individualistic. What works for one person may not work for another. Diet, in particular is a trial and error story. Best to keep a food/poop journal to see what triggers your diarrhea or cramping.
Best of Luck.
Posted 10/5/2010 1:57 PM (GMT 0)
I got symptoms when pregnant with my third child. I had her in june 2008. I kept thinking maybe it is milk or something else I'm eatting. Then I started getting accidents. I finally had a scope in March 2009 and was diaganosed with severe uc throughout my whole colon. I was put on asacol(allergic) than 6 mp(allergic) all within a couple weeks. Was put on pred. in June for a month and was great went off of it and within a day I flared again. Was put back on pred until i started remicade(july 2009) and was on pred from july 2009-nov.2009. i gained 50 pounds on this. When I went off I was now on remicade for awhile and I've been on it since than. Had a scope in March 2010 and it showed only minor improvement with the healing of my colon. Remicade has helped symptom wise. I was just upped to 7.5 kg. every infusion in August. I have to have a scope in about a month and either have to decide to take humira or a new trial drug mln-0002(I don't like the word trial, this scares me). Or surgery.

i'm telling you this to let you know. I've had problems since being diagnosed. All this within about a year and a half and now we are talking surgery. Know you aren't alone. Some people are fine on the asacol for years and never have surgery or the powerful drugs. Some like me aren't so lucky.

I guess you have to weigh the pros and cons of the drugs. I don't like it either and it scares me and my family but what are we to do. I know i will need surgery and now I'm saying why use the drug which don't seem to be working and not just have the surgery.

I hope you find something that works and this is a great site for information or just to vent. UC is hard to live with. Just take it one day at a time.

Oh, sode, milk, and coffee are horrible for me. Same with Mc. Donald's ha ha. Anything fried. Everyone is different you just have to keep a food diary and see what is causing you problems. Good luck

Posted 10/6/2010 7:03 PM (GMT 0)
Thank you all so much! And please, keep the info coming.
Just reading your responses and being on this site is helping so much - in terms of the information but also to help me feel less hopeless about everything.

Thanks again, and probably more questions to follow : )
xoxo
Posted 10/6/2010 7:35 PM (GMT 0)
Hi frisco girl

From what I've read alcohol is not a good thing to be having when you have UC. People who have UC have a unbalanced gut environmentand I would think drinking anything with yeast,malt,wheat,etc is not a good idea. But, as you probably know ,this disease is very relative. What hurts or harms one person could be what helps someone else. It's a sneaky little B*astard.

When we tapered our daughter from 30mg-20mgs. her flare went into overdrive. Personally, looking back now , her GI went too fast with the tapering. So now we are back up to 40mgs but progress is at a stand still and we are deciding what to do next. She had the genetic testing to see if she can do 6MP. Waiting on those results.


Eliminate some things from your diet....dairy,wheat,caffeine,alcohol,choc. Then introduce them slowly back and keep a detailed journal.

Just recently we added fiber(per this helpful website) to our daughters plethora of stuff she takes daily. We also have her on 3 different types of probiotics.

I read somewhere that you can mix 1/4tsp of Sea Salt, 1/4tspn baking soda in a quart of warm water and drink it. It's suppose to balance the PH in your gut. We haven't tried that yet but maybe others here have.


Anyway, welcome to this forum. We just found it recently and it's a wealth of information.
Posted 10/6/2010 7:42 PM (GMT 0)
Frisco girl, I'm in Frisco, too.

As others have said, this disease and what helps with it seem to be different for everyone. For me, I had to really change my diet while in a flare. I rebelled against doing so but my colon then rebelled against me.

I ended up going on a diet of only white food (rice, pasta, chicken breast, yogurt, cottage cheese, potatoes), no fried food, no caffeine, no carbonation, no sugar substitutes, no nuts (I think I can't eat nuts even when I'm in remission), no fruits with skin (melon seems okay), no dried fruit whatsoever, no vegetables in the cabbage family, and only the smallest amount of vegetables otherwise and, if so, they have to be over cooked.  No alcohol, either.  This is after many years of eating a diet comprised mainly of vegetables and whole grains. Ultimately, I ended up having to stop eating milk products, as well. I'm hoping that I'll be able to go back to a more normal diet soon, but I'm re-introducing foods slowly and one at a time as my flare eases.

The supplements I take are: Slippery elm, turmeric/curcumin, probiotic, fish oil, vitamin D, and up to 6 psyllium husks caps daily. The first two on that list are new to me, and I started on them to ease symptoms of UC; the others I have taken regularly for a number of years. I cut back on the psyllium husks when I'm in a flare, but I'm actually kind of questioning whether that decision was the right one. I take other supplements, as well, including a multivitamin with iron, calcium/magnesium, and grapefruit seed extract as an immune system booster.

I have a great GI here in SF if you need a recommendation. I love him to pieces and he's gentle & caring, and does a lot of telephone consultations, and he only bills insurance for in-office visits.
Posted 10/7/2010 2:38 AM (GMT 0)
Frisco Girl ~
Hey! Was visiting your wonderful city with my wife in July ~ we love it there... fortunately I have been completly non-symptomatic for over 1 year so traveling from our home in FL was an option this year.
I respectfully agree with all the suggestions from my fellow posters regarding diet and adding necessary vitamins, slippery elm, etc. and DEFINATELY a good Probiotic daily...

about the only persuasion I would add from my personal experience is, with direction from your GI, don't hesitate to go with the stronger drugs. As it has been noted, this disease is different for all of us, but looking back on the decade I've endured it, I can honestly say I wish I had NOT tried to tough it out with just suppositories, Asacol and natural remedies. I was faithful to the instructions on food in 'Breaking the Vicious Cycle',
sort of a Bible for us, but I honestly wish I would have attacked this with Immuron, or Remicade a year or more before I did. I feel like I sacrificed a couple of years ~ and they were miserable ~ by trying to 'hang in there'. The possible side-effects can be scarey, but do thourough research. A good GI doc will monitor you closely and see what works and you will realize the quality of life is priceless! Hit this disease with everything you can, and the sooner, the better! (again, this is my opinion from my experience...)
We'll keep you in our prayers. Kind regards, TJT
Posted 10/7/2010 2:51 AM (GMT 0)
BTW ~ I have miniscule amounts of Alcohol while in remission ~ in general it's crazy to even think about it in flair-up mode. Guessing all will agree...
best ~
Posted 10/8/2010 4:57 PM (GMT 0)
Thanks again everyone,
I am definitely off coffee and alcohol, and am trying the SCD. Hoping to see an improvement, but if not perhaps I will go back to the "white Food" diet, which is what they had me on when I left the hospital. I have my first colonoscopy coming up in 2 weeks so I guess that will help determine what the next step is, at least in terms of medications. I'm a little nervous but I guess that is normal.

Thanks again!
xo

Oh, to Janey47 - I have a GI whom I really like but I will keep you in mind for future reference.
And to Iflyfish - thanks for the advice, I will do some serious thinking on the matter.
Posted 10/9/2010 12:38 AM (GMT 0)
Hi Frisco girl and welcome to the forum!
I am one who finds that diet doesn't affect my UC much. Since my first dramatic onset flare, I have not had a flare serious enough for hospitalization or prednisone, though I have used steroid enemas some.
I have never given up my morning coffee, though in a flare I'll only have 1 - 1/2 cups (normally about 3.) I like wine with dinner on weekends, one or two glasses. Mixed cocktails give me discomfort and loose stools, so I stay away from those.
I gave up soda and carbonated drinks when first diagnosed.

You might try Rowasa, which is the retention enema form of the same medication found in Canasa. I've read the trails and wonderful literature about Rowasa and how it heals so well with very few side effects..... but personally, it doesn't do it for me. When flaring I use the steroid enemas, and I respond to them very quickly.
So much about UC is individual, from how we respond to meds to how we respond to diets, so the best thing to do is to keep a journal to see what YOU respond to!

Welcome again!
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