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Posted 1/20/2013 1:29 AM (GMT 0)
I've been losing so much blood again I want to cry cry

I'm taking 10 mg pred and 4.5 mg LDN. I want to take enemas again but cannot afford anything since I got a huge hospital bill. I'm thinking about fasting or something I don't know what to do. I have started SCD again as well but this time really strict. I will not eat allowed foods when I know my tummy cannot handle it.

I know there is not much which can be done about it. I just needed to vent.

I'm also getting an inflamed throat and mouth again too.

It will never get better will it? I've been inflamed ever since I got diagnosed.
Posted 1/20/2013 3:18 AM (GMT 0)
I'm sorry. I started a flare at the end of Nov beginning of Dec and I lost so much blood I though I was going to die. Then I had a sigmoidoscopy and I was losing cups of blood. I was terrified. I ended up spending one night in the hospital. But the bleeding stopped. It will get better.
Posted 1/20/2013 3:20 AM (GMT 0)
hey andrea. flaring sucks. i know how you feel, girl.

are you making the scd yogurt?

i wish i had made it months ago! i was just too tired and didn't feel like committing to the complicated yogurt process. i started making it a few weeks ago and i've had such a decrease in cramps and no bleeding since december. i am using coconut milk and even though it never comes out the texture of yogurt, it still has the sour flavor of plain yogurt. i don't have a yogurt maker so i blame the thin consistency on that.
Posted 1/20/2013 3:59 AM (GMT 0)
You can probably get into patient assistant programs for some kind of rectals. Have you looked at the resources thread? There are a lot of patient assistance programs listed. You could order from meds Canada but it's not cheap, just less expensive than buying retail here. I understand not being able to afford ordering anything, I was in that situation a few years ago and I was flaring badly. I hope the LDN beings to help you. It seems like some people do great on one thing and other people do well on something else. This illness is so frustrating. Try to keep from falling into an emotional state, that's how I became at the end of my stint with prednisone, I was miserable. I had to take an antidepressant but eventually things worked out and I got into a remission. I was flaring for over a year non-stop and I was on pred the whole year, gained a ton of weight. It was awful. i have to say, fish oil seemed to make me worse. Have you considered taking a break from it to see if things improve?
Posted 1/20/2013 4:00 AM (GMT 0)
It sounds like you need a larger dose of prednisone until you get it under control.
Sorry this is upsetting you.
Posted 1/20/2013 5:55 AM (GMT 0)
Hey Adrina,

I feel bad for you and relieved that you had somewhere just to yell out about how much this sucks.

I think easing out of the fish oil might be worth a try too, spend the money on getting the rectal meds.

Maybe SCD isn't right for you either. What happens when you eat some potatoes or rice? Do you feel better or worse?

I'm hoping you get a bit of relief soon. Hang in there
Posted 1/20/2013 6:12 AM (GMT 0)
Oh how we all hate the blood, its a wonder we can even function by loosing so much. Hope you get better soon!
Posted 1/20/2013 7:17 AM (GMT 0)
Sorry you are feeling this way Andrina :(
Posted 1/20/2013 2:50 PM (GMT 0)
Audrina-have you called the hospital and set up a payment plan. I know the hospitals will work with you (at least in Ohio) they will. Ask if there is any way you can get your bill adjusted? You shouldn't have to forgo getting rectals if you need them because you have a huge hospital bill. I hope you feel better soon.
Posted 1/20/2013 3:56 PM (GMT 0)
Thank you all for your responses. I need to call the hospitals for a payment plan but at the same time I'm anxious. I also cancelled all doctors appointments because I cannot afford it.

Yes I can leave the fish oil out but I know it will keep bleeding.

When I was on 40 mg pred I was still bleeding too. How much would I need to take? I may be immune or intolerant to it.

Joanna, I haven't made yogurt in a while. How much are you consuming? I bought my yogurt maker off of amazon and it was quite affordable.
Posted 1/20/2013 4:02 PM (GMT 0)
You could probably do 60 mg but I would ask a GI first. Do you do better on the rectals?

Look into the Rowasa Pap plan.
Posted 1/20/2013 5:05 PM (GMT 0)
I have done 60 mg before when I was very bad. Sometimes you just need it, to kick it out. But 10 mg wont do anythng, you have tapered prematurely I think.
Posted 1/20/2013 5:19 PM (GMT 0)
Fasting is a terrrible idea if you are anemic, don't do it. Have you had a blood test lately? You may need a transfusion or iron pills at the very least (but they take quite a while to work effectively).
Eat spinach and meat of course but again that works slowly. I lost a lot of blood years ago and it was frightening, I finally got a doctor to listen, order a blood test and I got 2 pints of blood in hospital. If you are a member of a blood bank (low cost to join) the blood is free but not the hospital costs.

Mesalamine enemas from Canada are not much less expensive than US prices when I last checked. The suppositories are less expensive by a lot from Canada. Of course you need an Rx but I bet your doctor would write you one if you explain you cannot afford to pay for an office visit.
Yes, look into patient assistance plans from Rowasa. You are exactly the person who needs it.

I would also bet your doctor would write a blood test script if you asked. Testing labs don't require money upfront, so get it done and add it to your bills because it is important to know if you are clinically anemic.
Posted 1/21/2013 4:24 PM (GMT 0)
Well I didn't fast. My last blood test while I was in the hospital because of food poisoning showed that my iron was fine. I take supplements for that.

I started Colocort again and this morning I had no blood but I'm not hoping for too much because I know the toilet paper will be all red again soon. I only have supplies for one week so I will use them every 2nd day since I cannot afford to buy another pack.

Where does this lead to. There is no hope I've been sick for 10 years and I keep telling myself every day that it will get better don't give up hope on remission. But it's just not happening. The day I die I will probably be in a flare.
Posted 1/21/2013 6:07 PM (GMT 0)
Hang in there. We have all been in your shoes its not easy. I myself just had my first setback in a few years. Just fight the good fight and carry on. Its all you can do,
Posted 1/22/2013 12:29 AM (GMT 0)
Read my thread on undendorsements.

I was bleeding like crazy too. I got it to stop. You need to slow it down. Librax, Mebeverine, Immodium and psyllium helps but it can be too rough at first but psyllium seed POWDER is always smooth and heals.
Posted 1/22/2013 12:36 AM (GMT 0)
Using Quick Reply to display my signature elements.
Posted 1/27/2013 2:33 AM (GMT 0)
Adriana

I sent an email to your address listed on here. Please check it.

Thanks

Mark
Posted 1/27/2013 5:30 PM (GMT 0)
Like some others have suggested, I agree that you should talk to your GI doc about high dose prednisone. I was at 40 to 60mg a day for 6 years, it was the only thing that kept me in remission.
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