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Posted 4/9/2011 1:05 AM (GMT 0)

I am a 30 year old female diagnosed with UC on February 16, 2011 by a flex sig scope.  I have experienced consistent bleeding with every bowel movement for several months.  I've been taking Probiotics espeically for colon health for 3 months.  I tried the hydrocortisone suppositories with no success and am currently on the hydrocoritsone enema's twice a day for almost 2 weeks.  : (  I also take Lialda 4 mg a day.  In additon to multi-vitamin, calcium and fish oil supplement.  I have not had bloodwork to check for anemia.  I do not have health insurance so it makes my diagnosis frustrating and tricky.  Thank goodness for family support.  There are mutiple times I do not make it to the bathroom in sufficient time and have to wear sanitary pads.  It is usally mucus and blood mixed.  Sometimes clots of blood are passed but they are always bright red.  This can be very embarrassing and has limited my social life. : (  I am considering herbal remedies to reduce inflammation.  In addition I was diagnosed with dry eye syndrome.  Is this common?  Any suggestions?  I would give anything for the constant bleeding to alleviate or go away.  Any advice or understanding would be tremendously appreciated as I am new to the UC club. Thank you.

 

UC diagnosed Feb. 2011

Currently taking: Lialda 4 mg a day and Hydocortisone enemas twice day, along with probiotic, multi-vitamin and fish oil. 

Posted 4/9/2011 1:15 AM (GMT 0)
Hello and welcome to Healing Well!

I think we can all relate to what you're going through. With my most recent flare in Jan 2010, I began to flare up while I was uninsured. Some of the meds are so expensive. I had Canasa on hand from the last time I had insurance and I was ordering generic mesalamine from Canada. It seems like the mesalamine had become ineffective for me. I couldn't afford steroid enemas and eventually it was hospitalization (which I couldn't afford) or prednisone. I took prednisone orally and it was very hard to taper off of. Not trying to scare you but if you're already on the max dose of Lialda and you're using steroid enemas wth no improvement, oral steroids may be your next step. You may consider a Rowasa enema instead or in addition to the steroid enemas once a day. Have you ever tried these? I haven't had any luck with supplements or herbs but some people do, some people also do very well by restricting their diet. Look into the SCD Diet on google. I tried it and it didn't help me. Are you able to retain your enemas all night? How many times a day are you going? Do you have frequency? It sounds like you clearly have urgency but that is one of the more difficult symptoms to rectify. It does get better but not until you've healed a lot.

I am sorry you're feeling down. You will find a treatment that works for you, it just takes some time and dedication.

i've head fish oil can cause D. You may want to stop that for now. Definitely get checked for Iron deficiency, I was anemic and I was winded very easily and I had a fast heartbeat all the time. I was able to solve that problemw ith iron pills.
Posted 4/9/2011 1:29 AM (GMT 0)
Thank you so much notsosicklygirl for your speedy reply.

I am taking samples of Lialda from my doctor and she said if the hydrocortisone enemas aren't working to call her next week. I am retaining the enemas all night and all day. Which has me concerned as to why the bleeding isn't stopping or clearing up. : ( She said the next step is prednisone and after that immunosuppressants. She also said something about doing a full colonoscopy, since the flex sig scope only showed a small part of intestine. All I can think is more money. Which doesn't help me feel better. At this point I am willing to spend any amount of cash just to stop the bleeding and have a somewhat normal bowel movement. : ) Your reply really helped me feel better. I am going to the bathroom about 4+ times a day, although sometimes its only to pass blood and mucus. Is this normal? Frequency urges seem to come and go, which makes me think I need to check into my diet affecting it. Unfortunately I can't stop the fish oil because of my dry eye syndrome. I think I will get checked for an iron deficiency because I have experienced fast heart beat and am winded easily which has me concerned. Why was the prednisone hard to taper off? Just curious? Its all so new to me, I'm trying to educate myself as best as possible. I have started looking into the SCD diet and am thinking certain foods are triggering the mucus and blood build up. Like fatty foods and dairy products. Which really bums me out because I've been gluten free since 2006 due to an intolerance. I just feel my dietary options shrinking by the day. Thank you again for you post.
Posted 4/9/2011 1:58 AM (GMT 0)
Diet modification could help you, it stopped my bleeding in a very short time after 10 years of hell. I have been taking prescription meds for 11 years with no improvement. It took some time to sort out how to use The Specific Carbohydrate Diet but it has been a miracle for my UC. I bled heavily, had extreme urgency and life was hell. Today I have no bleeding, no urgency and life is back to normal, something I never thought would happen.

SCD (the diet) is probably the most popular diet mod. for UC'ers because it has worked for many people.
You can google it, all the information is online, no one makes money off your illness or remission.
The best way to start is to stop eating gluten/wheat, grains and dairy. That alone helps many, many people. If you see some improvement then go with the rest of the diet for more. It may not be as dramatic as my early days but good luck.
Posted 4/9/2011 2:24 AM (GMT 0)
The bleeding can be disconcerting: I bled straight for over 2 years...I got used to it. Sounds like you're in a moderate flare and trying your best to get well. There's no timeline on going into remission.

Sue
Posted 4/9/2011 2:39 AM (GMT 0)
4x a day isn't so bad! I was going 20x a day at my worst. I did have a lot of trips just to pass blood/mucus. That's very common with UC. I actually needed a colonoscopy while I was uninsured as well and I had to get into a clinical trial to get a free colonoscopy. You should see if your GIs office knows about any trials for people with UC. I didn't qualify for the clinical trial but I got my free colonoscopy.

It's wonderful that you're able to retain enemas, that's a sign that you may not be in as bad shape as you think you are. I had a hard time tapering off prednisone because my UC kept relapsing. I wouldn't imagine that this is common but here on this messageboard I've seen a lot of people who have had trouble tapering. A short course of prednisone is not such a terrible thought, but the fact that a month taper can turn into 6 months or 9 months is terrible. If you start prednisone and are able to taper off in a month or 2 months, you would avoid most of the terrible side effects of pred but if you can't taper off and you need to try another treatment, you have to stay on prednisone until the other treatment is working. With immunsupressants, that can be 3 months. For me, it was longer because I had to add allopurinol to get into the range where I needed to be with 6mp for it to be effective. Sometimes immunosupressants don't work for a persn at all so they end up having to make the decision where to go from there, whether it is Remicade or another treatment, maybe they want to try diet or LDN but whatever the case, you have to be stabilized before you can stop prednisone or the flare may come back full force. Just be careful and form a plan before you start pred.
Posted 4/9/2011 8:16 AM (GMT 0)
perhaps you could try eating only boiled foods and taking the skins off of foods whenever possible.

good luck.

Posted 4/9/2011 8:58 AM (GMT 0)
@Butterflygirlie

if you can provide an e-mail i cand send to you the SCD book by elaine gotschall. i do not know if this forum permits private messages so probably you would need to make your e-mail public.

for me SCD diet worked and works verry well.
Posted 4/9/2011 9:28 AM (GMT 0)
Thank you everyone for your replies. I appreciate all the helpful advice. I am seriously considering cutting out dairy and going on the SCD diet full force. It would be worth the effort to feel better.

Thanks again! : )

I took out your email.... please go to My Profile and add it there so we don't attract spambots, ok? :-) - S.

Post Edited By Moderator (songlady) : 4/9/2011 7:09:10 AM (GMT-6)

Posted 4/9/2011 12:50 PM (GMT 0)
I just re-read your OPost and see that you have been gluten-free for a while so I wanted to say something related to that.
IMO it is the removal of all grains not just wheat that made a huge difference for me. Maybe I don't have a gluten-intolerance that is test-able but I know my digestive system is not able to process carbohydrates like a non-UC person.

It is hard to eliminate grains in our modern diets, they are pervasive. Corn and wheat are whipped up into many, many forms because they are cheap to grow and then manufacture. Whole wheat is considered healthy by many but not by SCD. Grain and other complex carbohydrates are addictive in a weird way. Bad for many bodies and yet we crave them.

When you are able to get over that hump and replace the grains (wheat, corn, rice, all of the others as well) and eat more low-carb and low-starch veggies your colon can begin the process of healing.

Most people can't conceive of doing this until they are pretty desperate and I was one of them.

Best of luck. Don't expect overnight miracles. Keep a food journal. Celebrate your small improvements and when you look back over several months you'll see how far you've come.
Posted 4/9/2011 1:07 PM (GMT 0)
Butterfly and Alinus -
It's great you two want to email each other, but the best way to do that here is to put your email in your user profile rather than in the body of your email. When email addresses are in the body of the email, that can attract spambots - and we don't need more spam here on HW!

So - Butteryfly, I am going to edit your address out, and if you want to share it, go to "My Profile" and put it there, OK?

Welcome, Butterfly! I am so sorry for your prolonged bleeding. Yes, we've all been there. BMs per day..... I don't even get alarmed until I have 4 or more a day, so... just to give you some perspective. But the blood/mucus urgency issues - bad stuff to try to live with!

Might your doctor have some samples of Rowasa enemas....? They might help.

Food.... I think that even many of us who haven't found dietary changes to be helpful would agree that we do change our diet when flaring. It's in individual process for many of us, and keeping a food diary can help. When flaring, I can't eat nuts (nut butters are fine) whole grains of any kind, salads, raw "scratchy" foods..... corn,, popcorn, gassy or fatty foods. I had one flare in which tomatoes caused me grief.
I find it helpful not to think "I can't eat this ever again!" but rather "for now I can't eat this...." that helps keep me optimistic.

Again, welcome, and keep us posted!
Posted 4/9/2011 1:16 PM (GMT 0)
Sometimes you just have to get used to bleeding- you were recently diagnosed, so to have blood for 2 months really isn't too bad! I bleed nearly every day, & have been for... jeez...... 3+ years now???? You get used to it! As long as you wear sanitary pads, your social life *shouldn't* be impacted too much- bring extra pads & underwear with you, & some baby wipes in a zip-lock bag. Honestly, I personally don't believe food/diet will affect your symptoms too much- yes, in the obvious sense that if you eat a ton of roughage, you will go more. But other than that, I doubt it will stop bleeding. For the quickest, cheapest fix, ask for prednisone- while it is indeed an "evil" drug in terms of side effects, tapering off, etc- it's super cheap & works super fast. If you start pred I will guarantee the bleeding will stop soon- you may not be able to get off it, though, or may have to rely on more expensive meds to maintain a blood-free bathroom habit. Are you able to get health insurance thru your state? Number of bm's is good too, on a bad day I go anywhere from 6-12x, a good day is only 4 or so!!!
Posted 4/9/2011 1:41 PM (GMT 0)
I would think you need to try rectal mesalamine medicines. In the U.S. they are Canasa suppositories and Rowasa enemas -- same medication, different formats. I believe you can order generic equivalents from Canada and they aren't too expensive. I would do this before moving on to any other medications. If your colitis is limited to the lowest parts of your colon, then this may be just what you need.
Posted 4/9/2011 3:30 PM (GMT 0)
mail was sent. good luck
Posted 4/9/2011 3:51 PM (GMT 0)
For me it is going gluten-free but you have already tried that. You could also try firming things up a bit with soluble fiber such as metamucil.

I have an eclectic list of triggering foods besides gluten and were only discovered thru trial and error via a food diary. High fructose corn syrup and milk/lactose intolerance are two other popular suspects.

I cured dry eyes for myself with a combination of fish oil and hyaluronic acid
Posted 4/9/2011 5:37 PM (GMT 0)
Sometimes you just have to get used to bleeding- you were recently diagnosed, so to have blood for 2 months really isn't too bad! I bleed nearly every day, & have been for... jeez...... 3+ years now

I must say I greatly disagree with this statement personally. Ending bleeding was a big priority for me because bleeding meant the inflammation was extreme. Urgency causes us more problems than bleeding, that's true, but until we get the bleeding stopped we cannot begin healing and urgency will continue. Just think of how bad the tissue must be, so raw that BM's cause bleeding.

Mesalamine enemas helped me but that was only a topical fix not permanent, and expensive too. What stopped my bleeding completely was stopping the foods that caused inflammation.
Posted 4/9/2011 7:04 PM (GMT 0)
You mentioned you were trying to eat different. With lialda you have to take it with food and not just any food, you have to take it with a high fatty content food or else it won't break down the coating on the
pill and release the mesalamine. I've been on Asacol HD for over a year and it's the best. I take 3 pills 2x a day. And I don't have to take it with food. I'm getting ready to
lower my dose to 2.4g/day taking 2 pills in am and 1 at night.
Posted 4/9/2011 7:11 PM (GMT 0)
You do need to try the mesalamine enemas and get off the steroid ones.

Stop the fish oil for at least a week or two.

q
Posted 4/9/2011 7:25 PM (GMT 0)
Just a thought... sjogren's syndrome can cause dry eyes, and is an auto immune disorder. I think 25% of people with UC have other auto immune issues. I have it...
Posted 4/9/2011 8:37 PM (GMT 0)
Thank you everyone for your advice and suggestions. I am seriously considering the Mesalamine enemas. I think my doctor said she had some suppository samples set aside for me. I was reading about a needy meds assistance program too. I'd like to use that as a last resort though. I am slowly trying to institute a major diet change in hopes that this alleviates my inflammation. I bought a book today called: Crohn's and Colitis Diet Guide. I'm only on page 23 but it seems very informative and even contains 150 recipes. It is written by Dr. Hillary Steinhart. It may be worth checking into. Thanks again as I am new the whole chat forum thing but I'm starting to really enjoy it. Have a good day. : )
Posted 4/9/2011 10:40 PM (GMT 0)
I agree with you, imagardener- I wasn't trying to sound flip, or trite. I think what I meant was, sometimes the UC is basically impossible to get under control, whether you use Western meds, alternative therapies, dietary changes, lifestyle changes, etc. If this is the case, you're most likely going to see some blood pretty much daily, unless you opt for surgery. Ending bleeding is a priority for me too, just one I haven't managed to get to just yet! Frustrating, upsetting, the whole gamut. But heck yeah, try everything to see if does help. Personally, pred was the one thing that really helped immediately. Everything else is like a band-aid.
Posted 4/9/2011 11:49 PM (GMT 0)
I totally agree that we all want to end the bleeding and other GI issues, ASAP.  It's quite a challenge. 

I talked to my dad yesterday, he has UC, has had it for over 15 years now, and he just pops 2 Lialda every morning and that's that, no symptoms. 

Others of us, myself included, feel like we have tried practically everything under the sun and still have issues.

The first time I tried to modify my diet, I went with the Specific Carb Diet, and my symptoms were fairly mild at the time. Nothing got any worse, but it also didn't get any better.  I did suppositories, went to a chiropractor, naturopath, accupuncture, have now made all sorts of various modifications to my diet, and it's just so hard to figure out what, if anything, is really doing some lasting good.  My symptoms will improve for a few days, then come back.  For me it's bleeding, and I have the feeling it's right above my anus, like in the final inch or so of my rectum.  If that's the case, it's probably the place least affected by the foods I eat.  I'm constantly humbled by the frustrations of having UC, but also grateful that it's not any worse than it is.  Long story short, a lot of us here are still trying to find the answers that work for us, and I am constantly amazed how different everyone's story is.  Something that works for one person, might cause a flare for someone else, and vice versa. 

Hang in there, hopefully you'll find your answers soon.

 

Posted 4/10/2011 2:32 AM (GMT 0)
Eva Lou

I understand, I tolerated the bleeding too because the urgency was a bigger issue to me. The light bulb that finally went off for me was that "The urgency will not get better until the bleeding and inflammation decrease."

Why did it take me so long to understand this?
No doctor (I've had 4 over 11 years) ever said this and should have IMO.

Years of prescription drugs gave no improvement but several serious side effects. I felt like yelling "I'm mad as hell and I'm not going to take this any more."

So what I'm saying is don't settle for bleeding every day. That is not good enough and it's damaging to our health.
It's not our fault we got this disease but I for one am very disappointed in the medical community's offerings. I think much more could be offered outside of drugs and surgery. I was forced to find my own way out and it took too many years.

I think surgery would be preferable to incurable urgency and bleeding but that is everyone's personal choice to make.
Posted 4/10/2011 3:04 AM (GMT 0)
( I have not had bloodwork to check for anemia. )

This really concerns me. When I was in my last flare I only went to the bathroom 1-2 times a day with little blood. 8 months into this flare I had my blood work checked and they were fine. 6 weeks later I was rushed to the hosptial cause I was so anemic I almost died. Also, all my iron stores were depleted. Things can change very fast with this disease. I'm sorry you don't have insurance but this is something that should be monitored closely while flaring. I learned the hard way.
Posted 4/11/2011 12:51 PM (GMT 0)
Butterflygirlie,

Welcome to the forum. For me it's been a wonderful place to get answers, support, and advice - invaluable.

For more than 1 1/2 years, I was bleeding heavily, at a 10 (on a scale from 1-10, 10 being the worst), with lots of blood clots and pieces of mucosal tissue as well. I tried many different drugs, suppositories, enemas, including several rounds of prednisone, without any success.

When my doctor suggested I step it up to more severe medications with very severe side effects, I balked and did a great deal of research.

I finally decided to go to an osteopath so he could put me on LDN, low dose naltrexone, and finally, after some detours, I got on Transdermal LDN and after 4 days on it, my bleeding went from 10 to a 3, and then in another few days to 1, and now after 3 weeks on it - to ZERO.

I'll include the info on LDN here, from another post.

Perhaps it's something you should consider?

 

I am doing very well now on the Transdermal LDN, I'm going on my third week now. The bleeding which used to be at a 10 is now at a ZERO, and for the first time, am having normally formed BM (sorry about the details, here :()

I'm sorry I lost 5 weeks on the oral LDN. I found out the hard way, that my body couldn't absorb it. And if you think about it, it makes so much sense - people with UC and Crohns and going to have absorption issues in general since their gut isn't functioning properly.

How long did it take to start seeing a difference? On the transdermal LDN, after the 4th day, I noticed the bleeding was much, much less - from a 10 down to a 3.

I've also noticed that whereas before if I ate anything other than protein, it would increase the bleeding, but since the transdermal LDN, I've cheated a few times, and NO increase in bleeding, no intestinal distress!! Overall, I am very happy with my progress on LDN, and will give it a full 6 months to complete its "immune boosting action", as the compounding pharmacist told me. And even when I am in full remission, as I fully expect to be in 6 months, I don't think I will ever get off the transdermal LDN since they are no side effects, and it boosts your immune system, is cheap, so I don't see the harm in continuing to take it. I am however, hoping that the LDN will also help with the terrible Reactive Arthritis that came with my UC, and that apparently may take about 6 months.

Overall, I  would highly recommend to any UC and Crohns patients to do their research and due diligence on LDN, and go for it. But I would suggest, based on my own trial and errors, that they do Transdermal LDN right away. It bypasses the gut, and get absorbed into the blood stream right away.

I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me alot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL.

They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN.  If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

 

Please, go to www.youtube.com write:  Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other Crohns and UC patients  have experienced when used LDN, choose Crohns Disease and UC at:
www.ldndatabase.com

Hope this helps. Good luck to you.

Please let me know how it works out for you.

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