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What Next? 60 Days of Bleeding

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Ulcerative Colitis
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Posted 12/21/2010 12:06 AM (GMT 0)
I've been diagnosed with ulcerative colitis for one year. I'm currently experiencing my second flare up. The first time I had a flareup, the Prednisone brought it under control almost immediately. However, after a month and a half of Prednisone (just finished peaking at 60mg and now weaning off of it) I'm still seeing considerable bleeding (60 days of bleeding).

I've tried Elaine Gottshall's diet and basically ate chicken broth, dry curd cottage cheese and chicken for 7 days. Lost nearly 20 pounds in a month. Since then i've been on a low residue/fiber diet mainly sticking to white bread, chicken, rice, coby cheese. In addition, i've been taking a high potency SCD multivitamin

I'm now taking a hard look at Jini Patel Thompson's diet which consists of an elemental diet (Absorb Plus), Udo's Flax oil and Natren Bifido Factor to compliment it.

I'm hoping to cover all of my bases before my doctor recommends a harsher pharmaceutical treatment.

Do you have any suggestions as to what I should do next?

Much appreciated!
Posted 12/21/2010 12:33 AM (GMT 0)
Hi Dan, Welcome to Healing Well!

I know how difficult it can be to get a flare up under control. Have you been using any other medication besides prednisone? Many of us have luck with Asacol or Rectal medications. I've used rectal 5ASA and steroid foams to help get flare ups under control.

I tried some diets too, never the Jini Patel diet but I did try SCD and it didn't help my bleeding. I think wiping out bacteria is only helpful if you're dealing with a bacterial imbalance and many of us aren't dealing with UC due to bacteria. Have you considered an immunomodulator like 6mp or Imuran? Have you had stool tests or tried any antibiotics? There are a lot of medical treatments available but I understand not wanting to take anything too harsh. I have a page long list of supplements I've tried and I don't believe any of them helped significcantly.
Posted 12/21/2010 12:49 AM (GMT 0)
Thanks for the reply notsosicklygirl.

I was on Hydrocortisone Acetate for a couple of weeks without luck.

Sounds like i need to discuss Asacol, 5ASA, steroid foams and an immunomodulator (6mp or Imuran) with my doctor. I haven't done a stool test or tried any antibiotics. Any suggestions as to what I should try first?

Thanks again!
Posted 12/21/2010 1:27 AM (GMT 0)
     OOPs...just read where you only have had UC for a year.  I suppose the doctor wants to see how severe your disease has gotten.  However, my GI never like to do a colonoscopy while I was on prednisone because of the risk of infection.  I believe he did do one when I was down to 10 mgm.  Diet never had any effect on me and I think I tried them all SCD, etc.  I lived on salmon and baked sweet potatoes.  Since having my operation, I don't believe I had salmon once..lol.  Oh, and I ran the gamut of meds too..you name it, I took it.
Posted 12/21/2010 1:30 AM (GMT 0)
Were you using the foam every night?

I think I would want to get stool tests done because that would eliminate the posibility of a bacteria. You could have something that is making your UC harder to treat. You would also get some answers from a colonoscopy. I saw your other post and I understand it's a lot of money but it would give your GI the ability to evaluate exactly what is going on. Right now, he can offer treatment based on your symptoms but you don't know if the inflammation is effecting the rectum or if it's throughout the colon and large intestine. There are different 5ASA medications that are designed to treat various areas. I have tried a lot of different ones and I've had the most luck with Asacol/Lialda but others have great luck with Colazal, Pentasa or Sulfasalazine. Immunomodulators are usually used for people who can't get off of prednisone and they can take a few months to become effective. They also require frequent blood work for the first couple of months. It's definitely a harsher treatment than 5ASAs but it can be helpful in regulating autoimmune issues.

When will you see your GI again? I am sure he will mention all of this to you. I've had pretty frequent colonoscopies lately because I had one last year and then I flared up and my doctor wanted to see the extent of the flare. She did a colonoscopy and things were mild but then I flared up worse and we decided to do a sigmoidoscopy to see what was going on... It really depends on your GI and symptoms how often you have a colonoscopy.
Posted 12/21/2010 1:48 AM (GMT 0)
Yes, I didn't miss a day for 2 weeks.

I'm set to see my GI the second week of January. Had a beach vacation scheduled a year ago. I'm looking forward to it but not looking forward to the fact that i'm having a severe flareup while i'll be out there.

Does the GI do stool tests?
Posted 12/21/2010 2:03 AM (GMT 0)
Yes. You could probably get a kit and do the test before your appointment if you have time.

It's unfortunate about your vacation. Maybe you could speak to your GI on the phone and see if he is willing to call you in a prescription for an oral 5ASA? I remember Asacol helped me get out of my first big flare up. After a year it seemed to stop helping as much but I did get a year of full remission from just Asacol alone and others have it keep them in remission for years & years.

Hopefully you get more responses. I've seen others here in your exact shoes and they have pulled through and healed. Maybe someone will have some tips.

Are you taking probiotics?
Posted 12/21/2010 3:52 AM (GMT 0)
Can you get a kit at the pharmacy?

Thanks for the tip, i'm going to check to see if I can get an oral 5ASA.

I just started taking Natren Bifido Factor.

Thanks for all of the help, i really appreciate it. I hope you're able to find comfort as well!
Posted 12/21/2010 3:58 AM (GMT 0)
Looks like i forgot to mention that i'm currently taking Lialda. Is the oral 5ASA (Asacol) the same thing?
Posted 12/21/2010 4:21 AM (GMT 0)
Yes, they are the same. How many Lialda are you taking? 4 is the maximum dose with Lialda I think.

You could try the rectal medication Rowasa.

Since you're on Lialda and prednisone, your GI will probably mention 6mp or Imuran as your next step. How long were you on a high dose of prednisone? I remember when I was starting at a high dose, I thought my UC would never respond because it took quite a few days. I also had the worst insomnia. Are you getting rest? Rest is good for healing.

I picked up the testing kit for free at my GI's office.
Posted 12/21/2010 4:28 AM (GMT 0)
Taking 4 a day.

I feel discomfort in my left but more specifically on my right side, is the Rowasa able to work that far into the system?

I've been taking 60 mg for about 3 weeks with no change.

I've struggled to get sleep, not sure what i can do to change it though.
Posted 12/21/2010 8:55 PM (GMT 0)
Dan,

Have been in your shoes. I took Bentyl to reduce the 'trips', helped me get night sleep. If you don't have a prescription for Bentyl, try imodium. I hope its an OTC drug in the US.

Just curious if you can stop that diet thing till your condition is under control. If you are not willing to do so, at least talk to your GI and let him/her know. At the hospital I consult in Stockholm, Sweden, every doctor in the team has refused to try any kind of special diet. They maintain, eat your regular food. You do not need any kind of special diet, so honestly I have been eating everything in moderation, except gave up on alcohol and coffee.

I don't want to be judgmental, at the same time, I see that in the US, special diets and supplements are considered as helpful and even prescribed/suggested by the GIs. Here in Sweden, its always a big no no, doesn't matter if its covered under prescription or not (for insurance purposes)

Long flares are not good as long term inflammation could lead to some really undesirable effects. I am very surprised that you could wait for 2 months. Thats a really long time my friend. A week and I would be super stressed.

Good Luck with everything.
Posted 12/22/2010 2:38 AM (GMT 0)
Thanks Deltaforce.

Great tips.

I'll look into Bently.

My GI doesn't have an opinion on the diet thing, he's not a believer. The idea came from research that i've done online. I wonder if i'm making it worse but at this point i'm trying everything to see what works. Prednisone doesn't seem to be doing the trick, how did you get back into remission after only 2 weeks?

It's definitely been a long 60 days, although after reading through several of the posts on this forum I feel like i'm not alone.
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