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Trying to stop bleeding & inflammation (HELP)

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Posted 7/5/2013 6:20 PM (GMT 0)
Originally posted in the Crohn's section instead of the UC forum.

Good Morning All,

This is my first post on this forum. I was diagnosed with Ulcerative Colitis back in 2005. Initially I went through all sorts of meds (Asacol, Colazol, enema's, prednisone, etc.) Ultimately I was able to get my symptoms and severe bleeding into remission with Colazol & prednisone. Went almost 5-6 years without meds and a single flare. Within the past two years I've had some small flare ups but was able to get them under control with a course of enema's. Flash forward to now... Last month I started experiencing symptoms of a flare up and it gradually has gotten worse. I initially started with a course of enema's (mesalamine) but it didn't seem to help much. I'm now on 40mg of Prednisone & hydrocortisone enema's and it doesn't seem to be helping. The prednisone seems to only supress my symptoms during the day until evening hours. That's when I'm frequenting the restroom multiple times (3-5 times mainly mucus & blood).

As for my diet goes I eat very clean (followed a paleo diet for a while). I've cut out beer and any type of alcohol completely. Went on a SCD specific diet for a week and didn't seem to get any results from it. I eat banana's, stay away from dairy, chicken breast, homemade broth (chicken & beef). I am still incorporating some veggies into my broth (carrots, celery, onions). I don't know what else to eat. I'm thinking about incorporating something solid like white rice, quinoa, or sweet potato into my foods to help solidify things. I've also considered cabbage juice which I've read has anti-inflammatory properties. Maybe even slippery elm bark which is supposed to soothe the intestinal walls. I don't really know at this point. I'm just open anything. Thoughts?

Supplements right now I take a multi-vitamin, vitamin d3, fish oil, garden of life primal probiotic.
Medication right now - Lialda (4 tablets), Prednisone (40mg), hydrocortisone enema
Exercise right now - swimming, cycling, running

I'm open to suggestions and advice anyone out there may have.

Thank you for taking time out reading my post.
Posted 7/5/2013 7:37 PM (GMT 0)
Not too long I was in your shoe. This time me and GI agreed to different style.

No oral Pred. I started Bentyl as and when required, usually 20mg 3X aday. Only rectal hydrocortisone, 2X a day for a month. Depending on your inflammation location, it will help or not you decide. Your 40mg Pred is not working because most likely that dose is not enough for you anymore (happened to me with 30mg)

Within a week, my symptoms were under control, so I reduced Bentyl to only when I needed to use enema. After a month of Hydrocortisone, one hydrocortisone daily and one mesalamine enema daily. This was to check if bleeding returns. Luckily, it did not. So I continued it for 2 months.

Had sigmoidoscopy by the end of 3rd month now and realized the location of inflammation. She switched meds and introduced Canasa. 3 months down the line, I am still fine, knock wood.

Just for the record, I am not on any special kind of diet. Only vegetarian diet with organic food as and when I can afford. No junk or alcohol.

If you want to go other routes, you could try LDN. Check InSoFla's posts. She is using it for a while.
There are threads on use of clays, you could try that.
Posted 7/5/2013 8:21 PM (GMT 0)
Welcome fo the forum Bezzy.

Glad you found us.

Yes, deta is right.

I would suggest there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

Posted 7/5/2013 8:24 PM (GMT 0)
I think we all understand what you're going through to some extent. In my case I had things under control with Asacol for a year or two and eventually I started flaring up. I decided to try a course of prednisone. My symptoms were managed within days of starting prednisone but I could not taper off without going into a massive flare up. Finally, I accepted that I was not going to get better without moving on to other treatment options. I had already tried all the dietary stuff and supplements without any improvement so I didn't want to go backwards and try all that again. My GI had mentioned 6mp and I had read a lot of scary stuff about it here so I didn't want to take it even though I didn't have too many other options. After nearly a year on various doses of prednisone, I was willing to try just about anything. I took my doctor's advice and opted for 6mp. I didn't see improvement quickly with 6mp, in fact, I was a very slow responder. I was very frustrated and discouraged, I felt like I would never get better. Eventually I was able to taper off prednisone and maintain with 6mp and Lialda. I would prefer not to have to take medication but this is way better than being sick with UC. I don't have any symptoms of UC, I go once a day, it's formed... I don't have side effects from the 6mp. Did your GI give you any options for treatment beyond steroids and mesalamine? Might be time to consider something.
Posted 7/5/2013 10:56 PM (GMT 0)
Thanks for the replies. As of right now my only options were the mesalamine & prednisone. I'm not seeing any improvements with it at all with it. I'm scheduled to go in for a colonoscopy on Tuesday morning. I guess they can see how much and how far into my colon is affected. I don't know what other options they are going to present me with.
Posted 7/6/2013 12:04 AM (GMT 0)
Sorry to hear of your flare. Sounds like you are doing a lot of right things.
My only suggestions are to remove any rough foods (nuts, raw veggies, fiberous cooked veggies) and add fresh veggie juices (I have a juicer but if you have a health food store go there) your gut will love you. Way better than vitamins.

I'm not an SCD promoter but "one week on SCD"? Not much of a try. How long did you give Paleo?

Bleeding signifies a hurt and inflamed gut. Try and help it out with gentle foods and less work to do. A while back (years) there was a lot of dicussion of intermittent fasting as a gut rest. I did it and was pleased with results. Just beware of chemicals in protein drinks, I like to stick with natural as much as possible, juices and water.
Posted 7/6/2013 12:28 AM (GMT 0)
I thought about juicing but didn't think or know exactly what vegetables or fruits to juice. That would help heal. I don't have a juicer exactly instead I have a vitamix which doesn't really extract the juice from all the fibers. So I don't know if that would be good on my colon.

I've been doing paleo on and off for a little over 6 months. I am regretting all those nights I would go drink beer or alcohol thinking nothing will happen to me.

It's funny you bring up protein shakes, etc. I am a locally sponsored triathlete and drink shakes all the time and also take gels to help sustain energy throughout my long long workouts. The brand of protein I take is by Garden of a life Raw protein. I also take pre & post workout supplements from other brands that are not so organic. They never seemed to bother my stomach at all. However now that this has happened I've gotten rid of them all. I've been considering looking into supplements by Vega Sports which claims they are all natural and gluten & dairy free. Right now my training has taken a huge hit because I am tired or just too weak to do any of my long rides or runs. A typical morning post workout shake would be (raw protein powder, chia seeds, almond milk, banana, almond butter, frozen spinach, 2 raw eggs). I would blend this up and just drink it. Do you think that's bad?

Does any one see anything wrong with still following my training regimen in preparation for my races in August?

I'm going to stick to a broth diet and remove any roughage in my diet and see how I feel over the weekend. What other foods would be best to eat or drink that will put less stress on my colon?

Sorry for all the questions. I really haven't had anyone to talk to about this who understands what I'm going through. So finding this forum has been a huge relief. Thank you all for your suggestions.
Posted 7/6/2013 12:42 AM (GMT 0)
I have written over and over about the cabbage/navy bean chili which is controlling my inflammation. Chili has vitamin A which a recent study showed controls gut inflammation via cytokines. I will be making the chili with grass fed beef and spinach tonight like usual.

Wheatgrass juice or powder shots also controls bleeding per studies, per my own experience and per the original promoter of wheatgrass who herself suffered from UC.
Posted 7/6/2013 5:21 PM (GMT 0)
I concur to aguywithuc.

My mother went into remissionw ith cabbage and wheatgrass juice. She made both at home with cheesecloth (i.e. except blender, there was no juicer involved, if aeration is an issue). She is in remission for 15+ years. I tried that but it did not work with me.
She also started living a stress-free life.
Posted 7/6/2013 5:46 PM (GMT 0)
I'll give juicing cabbage a try. Last night I read so many positive benefits from drinking it. Right now a liquid/low residue diet (broth) seems to be gentle on my stomach. I'll go buy some cabbage and give it a try. Should I juice anything else with it? Celery, carrots, etc?

Does your mom grow her own wheat grass or does she just buy it from health food stores?
Posted 7/6/2013 5:47 PM (GMT 0)
Also aguywithuc.. What's the recipe for your chili?
Posted 7/6/2013 8:18 PM (GMT 0)
My mom grew it by herself. She had 14 baskets with planter soil ready. She would sow handful grains of wheat in that basket daily. By 14th day, she had enough crop of wheatgrass to make juice. She used to hold a bunch and cut with a pair of scissors. That basket would be ready to get next batch of wheat. Like this she took wheatgrass juice for a month daily. She repeated the course after 3 months and that was it.

Same time, she also drank 8oz of (green) cabbage juice. That was repeated once more and thats about it.

Drinking cabbage juice was not a big deal because it actually tasted sweeter and the smell wasn't funky but with wheatgrass juice, you really have to be brave. First time, I had it, I had a couple of sips and I threw up. So if you are planning it, make a very small investment in the beginning.
Posted 7/8/2013 4:12 PM (GMT 0)
I officially planted my first tray of wheat grass yesterday. Let's see how it turns out.

Also as of Friday night I started juicing (carrots, cabbage, spinach, kale, ginger, apples, etc.). It really helped ease my GI issues and frequency a lot! Maybe because I wasn't really eating any solids and my GI was not being agitated? Regardless I've kept up with this for two full days. I'm still on lialda & 40mg of pred. Really hoping to taper off the pred sooner than later.

I can't juice today because I'm on a clear diet due to my colonoscopy procedure tomorrow morning.
Posted 7/8/2013 4:36 PM (GMT 0)
@BezzyUC

I, too, am a endurance athlete and wanted to comment that the protein shake you described above (raw protein powder, chia seeds, almond milk, banana, almond butter, frozen spinach, 2 raw eggs) sounds just like the one I have after a long workout. If you are not having any issues after taking it, it should be no problem. All those things have been helpful for UP/UC patients.

Best...
Posted 7/8/2013 4:45 PM (GMT 0)
@protocolteck - Thanks for the reply. Yeah the shake never bothered me.

Quick question for you. What do you take pre-workout or even during long runs, rides? I used to take a ton of Gels, and powders (Cytomax, Accelerade, etc.) but don't think they are really healthy for me. So I've been considering Honey Stingers, and possibly coconut water during my long rides & even races. Have you ever heard of a supplement line called Vega sports?

Thanks.
Posted 7/8/2013 4:58 PM (GMT 0)
@BezzyUC,

I do not use those types of supplements pre workout. I only use a protein source like Greek Yogurt or protein bar and some caffeine ;).
I used to take Extreme Endurance (really big with cross fitters) but is was $$$ so I stopped.

Have you ever tried the Sunflower butter/spinach diet? I benefitted greatly from this and since you already use some spinach in your shakes, I would suggest adding SF butter instead of almond butter (they taste the same but SF butter works best). This is not really a diet, rather, you are simply adding this to whatever you eat now. It stopped my bleeding in its tracks (My GI confirmed last week that many of his patients have found relief from Bleeding and mucus from taking sf butter/spinach) They do not have to be eaten at the same time. Do some searches on this board as there are years of positive comments.
Posted 7/8/2013 5:04 PM (GMT 0)
@protocolteck -- Thanks for the suggestion. I'll look into Sunflower butter. I've never tried it. I usually have stuck to cashew or almond butters.
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