Bleeding and Diet

Unfortunately I don't think I'm a person whose disease can be controlled with diet modification, mainly because I can eat anything and not notice any impact on symptoms. Some would say that makes me very lucky but I'd love it if cutting out a certain food group or something would rid me of some the nastier symptoms! The symptom that bothers me the most is the bleeding, and I would love to find a way to make it stop. I'm pretty sure a colectomy is in my near future but 3 months ago I landed my dream job and I want to hang on there as long as possible before confessing about my illness and having to bow out (it's in TV so I get short temporary contracts that get renewed, so legally then can give my job to someone else by just not renewing my contract and I can't cry 'discrimination'). The more experience I get here, the higher my chances of being able to get back into this field of work post-op. But the bleeding... *sigh*, it always increased quite quickly and becomes debilitating because it wipes me of my energy and threatens to put me in hospital. If it wasn't for that, I could probably put up with the other symptoms for a while since pain is rarely a big one for me and I have a toilet mere feet from my office (which I only share with one other person so not too many 'is he going in there AGAIN?!' looks lol). I don't think diet will work but I'm out of ALL medicinal options and willing to try anything really. So has anyone noticed an improvement in their bleeding (if that's one of your symptoms) as a result of changing their diet? If so, what change did you make and how quickly did you see results?

My UC was similar to yours. I never had cramping, pain, and diet never gave me any relief. My last flare before surgery I bled for 2.5 years straight. I did end up anemic and with a loss of B-12 stores, but surgery resolved all of that. I had a friend with UC at the time who sought help from a Chinese herbalist. She swears that the herbs he gave her stopped all bleeding. So, you might try to find an herbalist in your area. And if you ever opt for surgery, and live in Los Angeles, I have a great surgeon recommendation for you.

Sue

I tried diet mod. several times over my time with UC and didn't see any improvement (or marginal) due to food control. But...the last time I tried diet mod. 2 years ago (after my husband saw an online article about gluten-intolerance not celiac) I gave it one more try. I was bleeding with all the other horrible UC symptoms. With no change in my meds and only going gluten-free my bleeding stopped. That's my personal testimony and your mileage may vary.

Did gluten-free "cure" me? No, I continued on with diet modification loosely based on the Specific Carbohydrate Diet but as I went along I kept a food journal and closely watched when my symptoms were worse and put foods "in" or "out". Some things went in and out several times because it's very hard to pin this down.

I never had any symptoms I could pin on bread or wheat/gluten and have been tested (negative) for celiac. All I can say is gluten-free works for me (plus other diet mod. added). Has my bleeding ever returned? Yes, but not as much and it goes away quickly when I correct my diet and use mesalamine enemas. And I have my life back.

I didn't mind the bleeding it was the other symptoms (urgency and D) that made my life hell but until I got the bleeding gone nothing got better. Bleeding=inflammation.

It's not that hard to be gluten-free for 30 days to see if it helps-well worth a try. My feeling is use everything available that isn't harmful. Most supplements have done nothing for me, the only one that has proved it's worth is VSL#3. However LDN is on my short list if things go bad in the future.

Diet mod. does not work for everyone and 2 years ago I would have said "Been there done that" and it didn't work for me. But this last time it worked.

Warren86,

Glad to hear you're familiar with LDN and are open to trying it.

To answer your question: yes, many folks have been on immuno-suppressants and give LDN a try and have found it to be successful which enables them to reduce their dosages of immuno-suppressants.  I would definitely give it a try.

As far as how long it takes to kick in, it varies on the individual. Those who are on SCD seem to get much quicker results - IMO it's because it's one less thing that competes. But it could take a few days (as in my case) to a few weeks.

Here's the UK website for LDN: http://www.ldnnow.co.uk/

I know Dickson Pharmacist in the UK specializes in LDN, perhaps you can give them a call and ask more detailed information if you like?

Also a bleeder, but now beginning to experience the cramping and pain I've been hearing about over the years. When I'm flaring, nothing will help the bleeding--even just eating the blandest diet, the bleeding will be the same, so I just eat whatever tastes good. The only thing I believe correlates somewhat is alcohol--this definitely ups my bleeding, so I cut alcohol out altogether and have decided to make it a permanent decision, instead of occasionally drinking.

Thank you for the suggestions everyone! I might try some of these things.

pmedic, I'm amazed that you were able to get from your doctors recommending colectomy to being controls on 5ASAs and probiotics/sups! How in the world did you manage that? Had you also tried immunosuppressants and biologics before this? Any advice you could give would be great.

To be honest I'd welcome a colectomy with open arms some days, but my colitis is 'indeterminate' despite no small bowel involvement so I can't be guaranteed a j-pouch (and the pessimist in me is pretty sure I'll get labelled with Crohns after the pathology report and won't be granted one). So trying to hang on to my insides but I don't like my chances. I just wish I knew what, if anything, would help.

Yep, LDN has given my life back.  I eat just about everything with no problem; when I have a blip I make sure I don't forget VSL#3, psylium seed powder and I occastional use mesalamine enama.  But it was the LDN that really kicked this UC in the butt.  I have been slowly passing the word on to people up here in the mid-west.  Also, LDN does take a little time to work; however the benefits (at least for me) are soooo worth the wait. 

benny1010,

Hi, does anyone know if it has to be the low dose pills? Or can i break up the 50 milligram pills?

Are you referring to LDN with this question?

The LDN studies and the LDN people are referring to is low dose with dosage usually being about 4.5mg, however some people do start at lower dosages of about 1.5mg or 3 mg, BUT it is generally prescribed by a doctor either as a transdermal cream, or oral pill with different fillers (there are some fillers which are problematic for many).

I would NOT recommend your breaking up the 50mg pill, for a variety of reasons: 1) you wouldn't know the exact dosage you would be consistently getting 2) you'd be getting alot of the filler, and you need to know which filler is in it.