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Please Help!!! Extreme case of UC bleeding

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Ulcerative Colitis
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Posted 6/7/2011 2:13 PM (GMT 0)
Hi all, this is my first post and I'm at my wits end. Been to the dr's several times had a colonoscopy a few weeks ago and diag'd with extremely severe UC. Put me on pred, tramodal for pain and lialda. Dr says he really wants me to go on imuran which I don't want to go on because of all the bad things it can do to you, plus he said I would have to be on it for the rest of my life.

I was getting better but then I had BM that was rather large or at least larger than they have been because I've been so imflammed. It seemed to have ripped me up and the bleeding started again. That was over a week ago and I can't seem to stop bleeding. We really want to start LDN but because of the massive pain I have I'm afraid to go on it as tramodal can't be taken while on it.

My question is what can I do to stop the bleeding so that I can get to the point of have the dr give me the prescrip for LDN? I have had this disease for over 3 years and this is my first bad flare. I'm sure you all know how painful this can be and I'm at my threshold I think...

Please help.

Thanks all for listening to my crys :)

-------------------------------------------
Male 41 - Dallas
1.5pred 2x - tramadol as pain is needed, florastor, threelac, loilda 1.2 2x day and magniesm 3x day.
Posted 6/7/2011 2:25 PM (GMT 0)
I cannot tell how extreme it is. I was having all blood over 20 times a day last year in summer. Sounds like your bleeding went away then came back. Probiotics, rest, fish, spinach from can and more rest.
Posted 6/7/2011 2:31 PM (GMT 0)
I'm right in those numbers 20 a day sounds about right. Yes I was getting better but then passed something I felt ripped me up and ever since then I'm having a flare within a flare.

So when you say, fish and spinach is that all you would eat then? I'm trying to figure out of an all liquid diet is necassary or would the spinach and fish do it? I'm a big believer in spinach it helped me the first time 3 years ago but I wasn't bleeding like I am now so i didn't think to try it.

Thanks again for your suggestion! Have a great day.
Scott
Posted 6/7/2011 2:33 PM (GMT 0)
Have you tried rectal meds?
Not true that Imuran is a "rest of your life" medication.
I think you need to do more research on UC and treatments.

Sue
Posted 6/7/2011 2:35 PM (GMT 0)
I've tried the canasa but was experiencing pain like trobbing. I know the rest of your life sounds extreme but when the dr said that, i was like what the rest of my life and he said yes.

Has anyone used Imuran and have it help? I really think the LDN might be the way to go with all I've read but I have to get the bleeding to stop and the pain.

Thanks,
Scott
Posted 6/7/2011 2:52 PM (GMT 0)
Gosh, I'm so sorry for all your bleeding!

You might check out posts by MYUC - he's our poster child for Imuran. :-) It has helped him a lot.

I would definitely eat very lightly - spinach and fish, maybe some rice..... and make sure you are getting plenty of fluids: a lot of water.

And read through our Resoucrses section at the top of the forum, and maybe read up on the various meds at ccfa.org.... that ought to help you be clearer about your options.
Keep us posted.
Posted 6/7/2011 4:24 PM (GMT 0)
SparksUC,

Sorry to hear about all the bleeding and pain.

What about diet? What are you eating?

Defenitely stay away from dairy and wheat products for now.

I would suggest for now a strict adherence to SCD - Specific Carbohydrate Diet.

Also adding some: L-Glutamine 15 grams powder at least daily, omega 3 or krill oil supplements at least 2000 mg daily, VSL #3 probiotics.

Also, perhaps a very good high quality Whey Protein. The one I take is the best on the market: Dr. Mercola's Pro-Optimal Whey Protein. It already contains digestive enzymes which makes it so easily digestible (and I am lactose intolerant and love it).

When I was first diagnosed with UC, I had those whey protein shakes 3 x per day, and then just some supplemental fish. And lots and lots of water. Now, I still have them 2 x per day. But have added other foods too.

Yes, I quite agree, LDN  would help you alot. But first you have to get the pain under control so you can take LDN.

Keep us posted.


 

Posted 6/7/2011 4:33 PM (GMT 0)
I feel for you and am so sorry you're bleeding so much. If you're that bad, has the dr ever mentioned jpouch surgery? I'm no dr...just someone who went through this too many years ago and the meds weren't helping.
Hope you're able to get things under control.
Posted 6/7/2011 5:15 PM (GMT 0)
"The rest of your life" sounds extreme but what your doc is saying is that there is no cure for UC and that most of us will be taking some form of maintenance medication for the rest of our lives to keep inflammation down (there are some lucky few that found their cures with no medication). I don't know what the statistics are but most people don't stay on 6mp/Imuran that long, there's a lot of drop-out (I'm a drop-out lol). And of course there's always surgery as a final choice.

My goal, and it's probably most peoples, is to get our inflammation low enough to keep UC symptoms to their least bothersome. For me medication was not enough, I'm not even sure it does anything at all but the one I take now, Balsalazide, has no side effects for me and is not as expensive as Asacol which I am positive did nothing to help me.

Please add an enema to your medication list, Rowasa or Busedonide, that can help your bleeding.
Also consider diet modification, that is what that gave me remission. Not easy but if it helps it's worth it.
When you get out of the pain and taking opiates then you can look into LDN.

Good luck.
Posted 6/10/2011 11:18 AM (GMT 0)
First of All I would like to thank everyone for commenting, you have been very helpful and it's nice to know that others are experiencing the same things that you are going through. Sometimes that is the hardest part is feeling alone.

Second, this is basically an update as to how I'm feeling.

So later that day I posted I went through a mental break down, crying, fever and thinking I'm dying etc. Well turns out I was having a reaction to the liolda drug and it was making me really sick.

I will make this as short as possible. Called the Dr, told him what was going on and he was like quit take the Liolda, here are some new pain meds because the pain in side had increased by 10 fold and bleeding was crazy. Also gave an anitbiotic thinking the drug caused an infection or just in case.

Then he went to ask if there had been anything that had changed in my life in the last couple of months meds wise? I told him my endo switched me from 125mcg of Levothyroxine to Armour 120mcg. His response was how have you been on it? I told him that I started the bleeding about 3 days after starting it. I told the endo about that and she said that it was just a coincidence that it was all natural and wouldn't do that.

Well over the next couple of months they had been raising my dosage from starting 30mcg all the way up to 120mcg. Each time I would complain the the about the bleeding and having to go to the GI dr and nothing is working to stop it....they were like well it isn't the Armour all natural wouldn't cause that.

So the day after my break down I called the Endo and told them what was going on and again the response was no it's natural and it doesn't cause bleeding. I put my foot down and told them it must be doing something because it is the only thing I've changed in my life and ever since I've been on it I've been bleeding and it has gotten worst so much so I now have an Extreme case of UC as the Dr put it.

She called back about an hour later and said she wanted to see me. I thought great she wants to get more money to tell me to my face again that it is natural and that she won't put me on anything else. I said screw this that haven't been helpful about this the whole time. All they have done is say it's natural it wouldn't cause this. So, I took myself off of it and put myself back on Levothyroxine 125mcg.

1st day on it. Bleeding has gone way down. Hasn't completely stopped but I feel like I'm feeling better. I'm seriouly hunger now so we have been going from the a liquid diet to introducing solids as the liquids aren't cutting it.

By mid day I'm actually going to the bathroom and passing gas were as just the other day air wasn't coming out because I was so inflammed.

Day 2

I actually had a full bm solid the bleeding has almost stopped. The blood that I'm seeing now is from a hemmi <= I hate those things :)

All my pain in my abdem is almost all gone I feel mostly sore now versus pain that I was experiencing.

AnyHoo - I'm not saying that this is my cure but I'm am saying that the Armour regardless of what the Dr says about it was effecting me and wasn't working for me.

I think the big story is you can't always trust what the dr says you really have to test and question, I'm finding alot of these people don't really care about finding out what is causing the issues they are just treating the symptoms.

Well that is it for now and I will keep you all updated as to my recovery from this and hopefully I will be in remission soon.

God Bless everyone and have a great weekend!

Scott
Posted 6/10/2011 11:52 AM (GMT 0)
SparksUC,

I am so glad you were your own best doctor and found the problem. So glad you are feeling  better and doing well.

I've learned from years of going to doctors that they don't know everything. And that means YOU have to be your own best doctor, because you know your body best.

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