Introduction:
Hi my name is Ally and I am 30 years old, I live in Republic of Ireland (county cork) but originally from Leeds in England. I have a boyfriend and a 2 year old toddler. I work full time at a hospital for people with learning disabilities as a Horicultural therapist. I enjoy walking on the beach, cooking, reading, films and socializing, as all the Irish do! I have family living in England and France. I love the outdoors and generally feel happy and fulfilled although can be very prone to stress through my colitis which I was diagnosed with 10 years ago.
Some more about me:
I am an outgoing, happy person, love to meet people and work with people, my passion is organic growing and sustainable lifestyles, my ideal life would be on a farm with chickens and organic pigs but as I live in a 2 bed terrace that might be a dream i have to work towards!!
Symptoms:
Currently not on any medication, but bleeding for 3 months with no cramps or diarrhea
Just Want the Bleeding to Stop
I was diagnosed when I was 21 after graduating from university and 2 weeks after a holiday in Corfu, doctors thought it was food poisoning, went into hospital and was diagnosed with UC. Had asacolon and prednisolone at the time which cleared it up. Was in remission for a few years until I became pregnant when I was 28, had proctitis (diagnosed through sigmoidoscopy) and back on asacolon, bleeding cleared up but continued with asacolon until Christmas last year when I decided after a bit of bleeding that I would come off the asacolon because i felt i didn’t need it. All I have had is bleeding and mucus since, never any cramps or diarrhea but it has got a little worse. Had a week of predfoam suppositories a couple of weeks ago but they didn’t stop bleeding.
I have started the SCD diet but not being totally strict as I eat potatoes and yams quite a lot, can’t seem to give them up, I grow organic veg and salad so plenty of good eating there, I also take UDO’S choice probiotic
and digestive enzymes
every day and have started taking 2 tsp L-glutamine
every day too. Have swopped dairy for raw goats milk, yoghurt and cheese. I generally love a glass or three of wine on a weekend but wondering if I need to shelve it? I am a healthy weight, def not underweight and I have a good healthy appetite and exercise regularly….
Any advice on what I am doing would be so grateful, does anyone else just have bleeding and what are the consequences? I am doing all this for 3 months or so, do I just need to be patient??
I am going to the doctors again next week to get my iron levels tested, i feel okay but the fact i have been bleeding for 3 months is worrying. Also just ordered 3 scd cookbooks
which i hope will help!!
Medications:
Asacolon and predfoam may have helped in beginning but i don’t think they make a difference now
written by Ally
submitted in the colitis venting area
Hi my name is Ally and I am 30 years old, I live in Republic of Ireland (county cork) but originally from Leeds in England. I have a boyfriend and a 2 year old toddler. I work full time at a hospital for people with learning disabilities as a Horicultural therapist. I enjoy walking on the beach, cooking, reading, films and socialising, as all the Irish do! I have family living in England and France. I love the outdoors and generally feel happy and fulfilled although can be very prone to stress through my colitis which I was diagnosed with 10 years ago.
Hi Ally, Have you tried the EVOO yet? I don’t see that you have in your story. Follow Graham from England thread of November 2nd, 2012 on this website. It has really helped me. I started the evoo treatments in Feb. and the bleeding stopped in two weeks time. I quit taking it faithfully a couple of weeks ago and the bleeding came back. I started it up again yesterday (3 Tablespoons throughout the day) and I swear I am felling better already. I suggest giving this a try but you must be faithful to it. I also take L-Glutamine, Vit D and eat greek yogurt once a day. Good luck!
what is EVOO ?
Extra Virgin Olive Oil
thanks so much will start tonight! just had colonoscopy today which confirmed active colitis in first 10cm of colon and they removed a polyp for biopsy too
Hi Ally,
Another idea is to try fermented L-glutamine powder. I take it and a good probiotic every single day, and I am in remission for over a year now.
L-glutamine heals the mucosa of the colon. It seems that bleeding is the last stubborn symptom and is very hard to stop. I added the L-glutamine, and the bleeding stopped within two days!
Cheers,
Bev
thankyou bev, not sure if the l glutamine i take is fermented, would it say it on the bottle and is it capsule or powder? thanks!
Hi Ally!
I just wanted to share that I have been having bleeding almost daily since November!! It’s a long time and it’s finally getting better. I am however on 4 medications (prednisone being one of them) I am on Canasa, Lialda, a Hydrocortisone enema. I also have Ulcerative Colitis along with proctitis. My eating hasn’t been good because the prednisone makes me eat alot. I don’t have much advice but I can say a few things to remember and I am reminded all week of this.. that This too shall pass. that no matter how difficult it is right now it will stop and will get better. I hope you start getting some relief. I am finally almost 6 months later noticing I don’t have as much blood. So hopefully it ends soon for you. I had my blood checked and after all the bleeding I thought my iron would be low but they said everything was fine.
Karen
thanks karen, I had colonoscopy today and they removed a polyp for biopsy and confirmed active colitis in first 10cm of bowel, i have been given asacolon suppositories which i start tmrw, fingers crossed! the hardest thing was not eating the tea and toast they gave me straight after haha!!
ally, i agree about the bleeding. it drives me nuts! i have c diff again and have been bleeding more than usual. my stomach drops every time i see blood in the toilet. it makes me so frustrated because i am beyond strict with the SCD/paleo diet and take all of my supplements. sometimes your gut just doesn’t care what you’re doing. i’ve had 5 blood transfusions and i’m getting my 16th iron infusion tomorrow. it’s so exhausting!! i wish it would just stop.
hi joanna, so sorry to hear that, it sounds awful! I get my iron results in a week as i have been getting dizzy spells, i have tried so hard giving up all grains but sometimes i just want to give up!
Well Ally, if I were you I’d shelve the wine for now. I mean, it makes sense to eliminate anything unnecessary, right? Just to see what happens. It can’t hurt, anyway. I know it sucks, I have a gorgeous bottle of wine which I haven’t been able to open and am dying to…but it’s not worth the extra pain/blood, etc. Good luck to you!
thankyou, yes i think in the back of my mind i know its the right way to go, last weekend i replaced my glass of wine with half a bar of dark chocolate….that was a mistake!!! must look through my scd book and get some recipes for saturday night treats that are allowed!!
Hi Ally,
You’re awesome! I love the bit about organic growing and sustainable lifestyles. Thank you and Keep up the great work!!!
Your comment about a glass or 3 of wine made me giggle. My holistic Doc says that wine is OK as long as it is sulfite-free. He says a sulfite-free dark red wine is best.
I would suggest that you get your Vitamin D levels up… Vitamin D is a powerful anti-inflammatory so that should help with the bleeding… also turmeric and boswellia are great anti-inflammatories as well.
A few months ago, I was in the same situation as you: WHEN will the bleeding ever STOP??!!?? It was 9 months for me. It’s more for some, less for others. It sounds like you’re eating a very healthy diet, so I’m sure that helps.
Oh… and the dark chocolate… my holistic Doc says it’s OK if it’s 80% or higher cacao content, organic and dark… I discoved the “Green & Black” brand… Organic 80% dark… it is heaven!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hang in there!
Hugs from Minnesota,
Polly
I never quite know where to post when I just want to give an update or ask questions, etc. Since I’m still bleeding & really want it to stop, I’m posting on this thread today.
This past week has been discouraging. Just when I think I’m getting better, I end up going backwards a bit. Right now, my main discouragement is being water logged. Bev, if you’re out there, I’d appreciate any words you might have on this. I still feel like I need higher doses of the l-glut. However, so much liquid is required to dissolve it. I normally take it with water, as I’m afraid of juices. It’s becoming downright stressful to drink down the l-glut, because I get so water logged: full, bloated, nauseous. Ugh. It’s like drinking prep, w/regard to the fullness. Nothing is ever easy. Blah. So, I find myself taking less l-glut, because I just can’t keep up. And I don’t know if I’m even getting any better at this point. I have fairly good energy & sometimes have solids. These are two good improvements. But, the bleeding doesn’t stop, I still have D daily, & some days I still have way too many trips to the bathroom. Can’t help but be discouraged sometimes. :(
I’m still taking the aloe vera juice & have been tweaking both of these things in an effort to figure out a method that works. In some ways, I feel like I’m getting better. In other (pretty important) ways, not so much.
Still taking 6 VSL#3 capsules daily, along with iron, multivitamin, Vit D, & liquid fish oil. I tried EVOO awhile back but noticed no improvement. Maybe I should try again?
lynne
Not to mention all the peeing! Ha. Always in the bathroom for one thing or another. :)
Also, I am taking Entocort (unfortunately & temporarily) which is a steriod that releases in the colon. My flare got so bad in the beginning that I chose to take this expensive med (instead of predisone). I’ve been taking it for about three months. My goal is to wean off Entocort but, since I’m still bleeding & having D, I’m scared to do that yet. At the same time, I’m not sure the Entocort is helping me anymore & it’s possible that it may be part of the problem. I am tempted to start weaning off but, as I’ve said, I’m kinda scared.
Lynne…I’m out here!!
Why is it taking so much water to dissolve the L-glut? I just stir the p*** out of my scoopful into about two tablespoons of juice. If not juice, then I’d use that much water. You should not be getting waterlogged! I would not like that either. I get nauseated easily as well. I can’t drink that much of anything…ever. The colon prep was always absolute HELL for me for that reason as well as the taste…
Do you have the North Coast Naturals L-glutamine? Even when I was taking 4 scoops, I still mixed it with as little liquid as possible and just swallowed it fast.
The thing with trying different things is, you really really have to give them time to work. Even over a year later, I still actually see even MORE improvement. For instance, I have NEVER been constipated in my whole life. That’s no joke. Ever. Just this past week, I was literalky having a hard time going to the bathroom! I sill managed to go…but when I told my husband that I could barely push out this huge ‘log’ he laughed and said, ‘that’s what constipation is like’! I was incredulous…but what I’m saying is that I continue to get firmer and firmer…and it took a whole year!! I was still relatively ‘loose’ for the past year, but at least with no blood or pain.
I sure hope this helps. Sorry to be so darned graphic…TMI!!
As for the EVOO….did you give it enough time, really? Always remember…you didn’t get UC in one week…or even one month…it most likely took months, or even years, for our colons to get sufficiently damaged and stripped of good bacteria only to be finally labelled UC…it can take months to see positive results, I’m sure. We all want it now…I know…I’m the same!
Please don’t despair, Lynne, even though it’s difficult not to. Keep going. I don’t know what Entocort is, but it could be possibly working against you. It IS a drug, after all. Some of our bodies actually reject medications and don’t respond well to anything while we are on them…like me.
Bev
:)
lynne, l glutamine is definitely a noticeable taste in water so it’s better in juice or a smoothie. i usually use coconut water because i can’t taste it at all. the most i’ve ever taken is 15 grams a day in 5 gram portions. it’s never helped any UC symptom i have, but it’s good for cell repair. i still bleed every day unfortunately even though i’ve been on l-glutamine for over 2 years now.
Thanks, Joanna. I will find something flavorful to mix my l-glut into. I think that will help the process a lot.
lynne
Bev – thanks! You always make me feel better. :) I guess I’ve been way over-stressing about dissolving the l-glut. Yes, I’ve been using the North Coast Naturals, but it’s harder & harder to get it here in the U.S. from Canada due to certain restrictions. (Wha??) So, I’ve had to use other brands at times & may have to again. However, I’ve never noticed one being any better or worse than another, results-wise. Not yet, anyway. So, using that exact brand is another thing I should stop stressing out about. (See how we UCers are! Rule-following stresser-outers! At least I am, anyway. Ha.)
No worries about being graphic. It actually helps! Besides, I’ve lost some of my modesty about such things since my diagnosis. Ha. It happens. lol ;)
I took a good quality (burned my throat) EVOO 3xday for 3 weeks. Other people seemed to notice a difference within days. I noticed no improvement, so I stopped. I will consider trying it again, tho. (Go ahead, Graham – if you’re listening, you can cheer me on in this regard.)
I will also consider that my medication (boo, hiss) might be preventing my body from responding well to the more natural methods. It just may be time to start weaning off & see what happens.
Oh, btw, are you gluten free?
Thanks again for the good words! I sure appreciate it. It’s great to hear how your body continues to improve. Very encouraging! :)
lynne
Lynne,
Hang in there…remember abut the aloe potentially being aggravating. Maybe take that out for a while. The other thing is a theory of a to down bottom up approach. Maybe the top would be the natural stuff and the “bottom” might be the Med? Maybe your bleeding is low? Remember to breathe and try not to panic. You can always taper your diet way back to aid in its healing. I think I mentioned before it is like a skinned knee that you keep falling on and opening up.
Breathe…:-) Shelly
Aww, Lynne, you are so sweet!
No, I am not gluten free. I eat anything…I’m lucky. The ONLY thing that I really can’t tolerate is TOO much real wheat. I can eat a whole wheat bagel, say, but I can’t eat a bowl of shredded wheat cereal. I will actually get blood the next day if I do. Imagine that.
Like Shelly in maine says…bottom up approach…that’s pretty good Shelly! Things will fall into place, it just takes time…and teeth grinding work…lol
:)
Shelly,
Thanks for the caution on the aloe juice. That is another confusing thing for me. I know someone who drank aloe & has now gone into a remission “so complete” that my GI doctor (her doctor, too) was so impressed that he asked if he could give me her name, so I could contact & drink the exact juice that she drinks. How can something that is known to soothe & heal the gut also be an aggitation? Also, I’m not familiar with the top down bottom up approach. Can you explain it? Thanks! :)
Bev,
I knew you had mentioned something about wheat. It’s great that you can eat anything! (almost) Boy, what a huge difference when I slam down the l-glut in a smaller amount of liquid. That changes everything! I’m encouraged to increase my dosage again to where it was when I was noticing improvement. Will keep you posted.
lynne
That’s the only way that I can drink the L-glut….in a bit of some delicious juice…like you say, just slam it back!
Think shooters…lol
:)
Lynne,
1 thing I know for sure is that UC is not a one size fits all disease. With that in mind, I never feel like I will find a “cure” for me as I feel I have an extreme genetic link. I also feel, especially for women, that our bodies are constantly changing. Along with that, are factors beyond our control-Environmental, food supplies/bad foods, colds, flus, stress, etc, etc. Not a pessimist-just a realist!
Now, with that being said, I won’t stop trying the natural routes. I have been doing this for over 30 years of a diagnosis and a lifetime of symptoms before that. I refuse to go on toxic meds ever again, but am not totally against resorting to some others as a last ditch, nothing to lose effort. My primary wrote me a pred. Rx in hopes of Murphy’s law that I wouldn’t have to use it and my GI gave me Apriso samples and a desperate plea to consider more meds after we discussed my back up back up surgery plan!
The top down bottom up theory was put it in a ccfa newsletter a couple of years ago bout treating uc orally and up through yur bottom with enemas. I personally could not keep the enemas in when I was flaring, not to mention my 2 curious terriers!! :-) That’s a pretty funny vision for ya!
Anyway, for you, I was thinking you could stick with the natural stuff orally and try perhaps the Med to where it needs to go if the bleeding is seemingly down lower. I think Adam’s Dr. Told him something similar a while back.
Like I said, I don’t have the answers, which is why I can’t rant! Wish I could like-Bev, but I really feel there is a difference in UC in how they are caused may effect the treatment..sort of like the difference between Crohn’s and UC or type 1 and type 2 diabetes. I am still working on getting out of a flare since Oct….I use Chinese herbs, SCD about 95+%, vit d, 4 g fish oil which helps with joint pain, too, power Smoothies, Mega doses of vsl 3 Rx strength, and sheer will and determination with a whole lotta stubborness!! :-)
Keep track of everything and listen to your body and gut.
Breathe and keep posting.
Best, Shelly
Shelly,
Thank you for your input. Ugh. Maybe I’m in denial, but I still struggle to believe that uc (mine anyway) is an actual “disease”. I tend to believe it’s fundamentally a bacteria issue. But, I hear what you’re saying with your examples of type 1 & type 2 diabetes and crohns & uc. I don’t have the answers, either.
Thanks for explaining the top down bottom up theory. I have talked to my GI dr about the possibility of medicated enemas. I’ve used them in the past with some success. However, this time, he says the more severe inflammation is higher than an enema can reach.
I have scattered thoughts about food & diet. I’ve been on a strict diet in the past that was specifically geared toward restoring & maintaining good gut health. It all makes sense to me, yet … something in me is resistent this time around. When I ate like I was fragile, I seemed to stay somewhat fragile. But, again, my thoughts on this are still fairly scattered & I don’t have the answers. So, like you, I can’t rant.
It does get complicated when experimenting with so many natural methods … being attentive to what might & might not be helping, keeping track of it all, tweaking, monitoring symptoms, etc. Kind of exhausting (and expensive!). But, I do have hope for good gut health in my future. I’ve had it before. I believe I can have it again. Plus, (also like you) I have a certain dogged determinedness about this.
Thanks again for your input, Shelly. I guess we’re all in this together. :)
lynne
I did the SCD out of desperation as i am allergic and intolerant to the meds anyway. I agree about feeling kind of lousy on it…I definitely lacked energy, but I knew I needed to heal so I tried it again and I know it helped. I don’t believe it is a cure for me, but the science makes total sense. After a few months I added n oatmeal and occasional rice and potatoes and some of my crabbiness left and some energy returned. It along with the other things has helped me to heal. I also gave up milk and yogurt and was very careful about eggs…the fourdarkhorseman on SCDlifestyle sit and used the original SCD book and Adam’s and pecanbread stages site. You can be intolerant to foods and not really know(not necessarily allergic.)
You do need an anti inflammatory like the fish oil and/or the astax. That Bev takes. It was my primary care that put me on the fish oil…I actually have an Rx for Lovaza 4 g.
Hang in there!
Shelly
Going to my Chiro. tomorrow to be rechecked for herbs..it is a changing regimen. I haven’t taken those other meds and this is my second flare since being Med free including a case of iritis with a flare last march. Work in progress 80-90%??
Shelly,
80-90% is pretty good! Although, 100% is everyone’s desire. :)
I do actually take liquid fish oil daily. It is anti-inflammatory in a small way. Probably not enough to make much difference for those of us in a real flare. I’m thinking I need to take something more potent. The curcumin is still on my mind, but research reveals that it also thins the blood. This may not be good for someone like me who’s bleeding daily. Could make it worse. :/ And I’m giving the aloe a break for a few days, just to see what happens. I may start it up again in smaller doses.
Funny (not) how I can be confident & hopeful re my uc and then micro-focused & in despair about it all in one day. Yes, I am an over-thinker.
Hope your chiro appt went well. :)
lynne
Has anyone here tried taking Curcumin? I’ve been told that it has potent anti-inflammatory properties. The health store lady thinks everything I’m taking for my uc is good: probiotics, l-glut, aloe, vit D, but none of these are anti-inflammatory agents. It’s true that I’m taking nothing to specifically address the inflammation (except my med, which may or may not be working). Any thoughts?
lynne
I take a 4mg capsule of astaxanthin every day, along with vitamin D, as anti inflammatories.
:)
Bev,
How much vit D do you take daily? Fyi, I’ve been hitting it hard with the l-glut these past few days (now that I’m slamming it down! Thanks!). It does seem to make me feel better and more stable. I still have an issue with having D too often, but I will try to be patient as you suggest. I know I still have some weapons in my arsenal. I may try evoo again. I’m also seriously considering cutting back on my meds, maybe even starting tomorrow. It both excites me & scares me!
lynne
I remember how afraid I was when I decided to stop my meds. I thought all hell would break loose….but guess what…it didn’t! I felt better, actually. Although, all of my UC symptoms except the bleeding had disappeared by then (before I added the L-glut), so I figured, why not stop taking the drug that was making me feel so ill (asacol).
I take 2000 units of vitamin D these days, because me levels are good now. I was taking 5000 units for about three months, when my levels were still too low.
It’s normal to be scared of dropping meds. I think we are just as afraid to disappoint our doctors, as we are to stop the medications….lol…don’t worry about the doctors and what they think. This is all about how YOU feel, Lynne.
Bev
:)
Thanks, Bev. I wanted to wait & be more stable before weaning off the meds so I could feel more confident about it. But, now I’m concerned that the meds are impeding my progress towards stability. We’ll see. Thankfully, the weaning is gradual. I also think it would be good for me to stop hyper-focusing on every move (haha) that my intestines make. It’s exhausting & I’m becoming an emotional wreck (which doesn’t help the condition). I need to take a step back & look at the bigger picture. I suspect that will help me to be more patient, too.
lynne
Lynne, you just gave yourself the BEST pep talk and advice EVER!!
Listen to yourself. You are wiser than you know!
:)
Hi Lynne, I haven’t tried the curcumin in large doses but this is what I do. If you google anti-inflammatory foods it will give you a list and curcumin is most likely one of them. I try to work these food into my diet and avoid the foods that cause inflammation. I feel as though there is some link between arthritis and colitis with our immune systems. I also think there is some sort of link between the mucus that is found in our colon and the mucus that is found in our joints. Just a theory. Hope this helps. Ann here is a sample of one of the links that lists top anti inflammatory foods. http://www.life123.com/health/nutrition/inflammatory-foods/anti-inflammatory-foods.shtml?o=3986&qsrc=999
Thanks for this, Ann. I have some concerns about curcumin as I am still bleeding daily, and curcumin thins the blood. Might not be a good thing for me right now. I research & google stuff everyday, and I don’t know why I haven’t googled anti-inflammatory foods before … blueberries! Yay! :)
lynne
hi Lynee,
power Smoothies..bueberrries, of course the ultimate anti everything! Studied tons in Maine! Careful with other ingredients. That’s where I put my vsl( it’s a powder), some aloe, oj w/calcium, meatmucul clear and natural..soluble fiber, 100% natural can juice, banans, cocnut milk or almond milk, and spirutein which is complete with vitamins and glutamine type…some people do have issues with spirulina, but I don’t see a difference if i don’t have it.
I have started to add curcumin in cooking. Oh, I ate a lot of very basic chx soup with just carrots, chx, squash, to rest my intestines. I did not make it from scratch like SCD, but we have more available choices now. Check out that pecanbread site it’s a .com and go to stages.
Chiro went fine..just went to adjust the herbs.
In my world being over 50% better without meds is amazing so where I am at is truly beyond amazing even though it has been about 7 months and counting in this flare…I am still on the other right side of the 50%! :-)
Be brave and go with your gut. You don’t have to go cold turkey with the meds.
:-) Shelly
hi there, sorry its been a month since my last post, crazy busy with work at this time of year, veggies growing too quick for me to keep up, had no time to be online.
I would like to share with you all my recent progress.
I stopped bleeding!!! its amazing really, I am still doing the scd diet, I take l glutamine, advanced acidophilus (probiotic) and enzyme digest with peppermint oil, the brand is ‘quest’.
I eat grainless granola every morning (homemade – nuts/dates/seeds/coconut oil) and I have switched to raw goats milk and yoghurt (local supplier) although I still eat lots of cheddar/feta/mozzarella and parmesan cheese. Salads with olive oil and balsamic dressing or soup for lunch, meat and veggies or salad for dinner, dark chocolate and dry wines as treats, and EVEN the occasional glass of Guinness! Oh and ice cream I haven’t been able to give up so lots of that too. Butternut squash to replace potatoes has been my saviour, along with courgettes and aubergines in ratatouille.
Not sure what people think about stress and colitis but I also started counselling a few weeks ago and I feel so much lighter (I lost my partner to cancer 5 years ago and don’t think I ever dealt with the grief) I am also practising ‘mindfulness’ as much as possible, trying to enjoy each moment rather than stress, and lots of stopping throughout the day to breathe!! Not sure if this will help anyone but I just wanted to share incase it does. I had one small relapse when I hadn’t made my grainless granola last weekend so I ate oats 2 mornings in a row at work and on the 3rd morning I bled a very tiny bit. The scd cookcooks are fantastic, I love the recipes. I am going to continue the scd diet for the summer and then start to reintroduce things one at a time to see what I can and cant eat. :) oh and I only have evoo on my salad at lunchtime, I couldn’t take the taste, too spicy!!
Hi there,
Myself Shivam Tamrakar,
I am from Bangalore, India.
I am struggling with Ulcerative Colitis and it’s been approx 5 year.
My current condition: Bleeding every single time when i go for stool. Like 2 spoons.
Medication:
Vegaz OD 1.2 Gm 4 tab in a day.
Azathioprine 25 Mg twice a day.
Mesalofoam and Entofoam once a day.
Could anyone please help me out with the bleeding? How can i stop it?