Colonoscopy results...Salofalk to Predinose+Imuran to Asacol?? - help

I've had UC for 7 years and have been taking 3000mg/day of Salofalk (4500mg/day during flare-ups) ever since. At first the Salofalk seemed to control my flares quite well...only got flares once a year that lasted for 3-4 weeks. But over the past few years I've gotten 2-3 flares per year and some of them have lasted 2-3 months. I'm currently in a flare that started in mid November with only 2-3 weeks of remission in February. To make things worse, my GI retired and I hadn't had a colonoscopy in 3 years.

I finally got to see my new specialist on Monday and told her how my flares have been getting more frequent and longer in duration over the past few years, and she said she wanted me to go on 40mg of Prednisone and start Imuran at the same time. Her thoughts were that the Salofalk isn't working for me anymore and I need to get out of this flare-up ASAP, hence the prednisone. She says I will only need to be on prednisone for 2 months but the Imuran will be my new long-term medication replacing the Salofalk. She requested some bloodwork and stool samples from me and scheduled me for a colonoscopy right away. That happened today, Friday.

I didn't get to speak to her after the exam, but the note she left was this:

Ongoing inflammation, but just at the bottom 20cm - biopsied.
We are going to try to bring you back into remission without suppressing your immune system by using a combination of pills and enemas that coat the rectum to decrease inflammation without getting absorbed. Advantage of this is very few side effects, disadvantage is that it doesn't work in more severe disease. If in 2 months, when I see you in office, you are not totally better, we will need to start prednisone and Imuran.
Bloodwork and stool tests were all normal, which is reassuring.

Prescriptions:
-Asacol 800 mg (1 pill 3 times daily, so 2400mg/daily)
-Salofalk enemas 4g for 6 weeks (1 enema at night, so 4000mg/daily)

So I'm a little confused now. I'm VERY happy she has decided to cancel her original plan of prednisone and imuran....but if she thought the Salofalk wasn't working well, why would she prescribe Asacol and Salofalk enemas? I understand the difference between taking Salofalk pills orally and the enemas, but from what I understand, Asacol is quite similar to Salofalk (both mesalamine drugs)...

Any comments would be greatly appreciate. Thanks in advance.

You would have what's called ulcerative proctitis. It encompasses your rectum and a teeny bit beyond.

She lowered your oral mesalamine because there was NO NEED for you to be on such a high dosage. You should have been on rectal meds from the start.

So, she lowered the oral dosage and put you on a higher dosage rectal that will deal with your inflammation.

The enemas are slower, and a 2 month window is a good fair try. I'm assuming you're to use them nightly till then? totally better or markedly better...will that be based on what you tell her or what she sees with a rectoscope in the office.

What exactly are your symptoms at this point.

Who put you on such a high dosage of vitamin D?

Are you still on the nicotine patch?

q

So, your doc is going to do another c-scope in 2 months? way too early. A rectoscope or rigid sig scope would be more in order.

The 10,000 IU vitamin D is very high..how long have you been on it?

I hope you have a refill for the enemas....because if you stop at 6 weeks from doing them nightly...you will probably relapse by the time you have the doc take a look-see. They should be tapered.

You might also consider to lower the vitamin C...that might be adding to some of your loose stool.

Melatonin, while a good supplement for some, is believed to contribute to autoimmune disease flares.

I would wait for the nicotine patch use after using the enemas to see how they do for you.

Licorice is a natural estrogen. Women use it during perimenopause. It might be contributing to some of your symptoms.

Just my opinion.

q

My UC has been very similar to yours for most of my life, only affecting the bottom twelve inches of my colon (compared to your eight inches). After initially getting it under control, a combination of mesalamine pills and enemas worked wonderfully for me over the last seventeen years. Pills as maintenance, and enemas to get flare-ups under control.

Hopefully, once you get things under control you will be able to rely on just the mesalamine pills/enemas. Since your UC is so low (20cm), Cortifoam (corticosteroid foam administered rectally) would probably also work really well on you - that is what originally got my first flare-up in remission (in combination with the mesalamine - I would do the enema at night and foam in the morning). It has all the benifits of corticosteroids (like prednisone) of being quick and effective, without any of the awful side-effects since it's non-systemic. If the mesalamine combos don't work, I would urge your doctor to try that route before something as hardcore as Imuran.

Good luck and keep us posted!

bootstrap, thanks for your insight. I really hope I can have success with the asacol/salofalk enemas and can avoid pred/imuran as long as possible. The Cortifoam sounds very interesting and I made a note of that on my list of questions to ask my GI when I see her again in 2 months...that list is growing at a substantial pace lol.

quincy, again thanks for your comments. I will definitely ask for a copy of the result for my records. My naturopath is not an MD, only a ND, but here in Vancouver, BC, naturopaths can prescribe certain things, I guess Salofalk enemas being one of them...I know because she gave me a prescription for it on Wednesday and I got it filled that day. She told me to wait until after the GI did the c-scope to start them as she didn't want to skew the results. But ironically, the GI prescribed the exact same enemas after the c-scope (in addition to the asacol) so I have two prescriptions for them.

I do conduct research of everything I'm suggested to take, by both doctors, specialists and naturopaths....often times to find conflicting evidence and studies that prove 'both sides' of the argument. And of course there is always the 'it worked for me' followed by 'it made me worse'...one of the more frustrating things of this process..trying to figure out what works for me.

The blood-work I got done on Thursday (which the GI said was normal) I haven't seen yet (ill get my copy of it tues or wed), but I got blood-work done on Dec 24th (when I was in the middle of that long 3 month flare and was under a lot of stress at that time from both the long flare and also that are elderly cat was being put down later that day...) and my family doctor, who ordered up the bloodwork, said from the results.. "your kidney and liver functions are that of a 15 year old girl....perfect" which I was pleasantly surprised to hear. When i got the results myself, I noticed protein in my urine was slightly high at 15 and the reference range is "<15" so I was just outside the normal. The only other 'flag' was my lactate dehydrogenase was low, 209 and reference range is 260-494. My urine creatinine was 18.1 mmol/L and my ACR was <1.0.

I don't believe I've had my vit D levels checked, I will get that done soon.

thanks again for all your help...it is truly very helpful.

Thanks for your suggestions...they sound in-line with my thinking as well so that is going to be the plan for sure.

I've used the enemas before and while I find them uncomfortable, they are not the end of the world. Started with the Asacol yesterday morning and the enemas last night...so far so good. I'm seeing my naturopath sometime this week so I will ask her some of the questions I now have for her and will report back. Thanks again for all your help.

Slofalk works for me because its disease is closer to rectum; anemas somehow didn't work for me as salofalk has. I have been diagnosed about 21 years, active disease for 5 years, went into remission with the suppositories the first time round, for 10 years.  7 years ago had flare up, which resulted in a fistula; it burst naturally with a pulstice of bread soaked in milk and salt. I went into remission again, for 7 years. Unfortunately, last July '11, I had a flare up, which I am still in. I left my job, got another job, changed provinces, and unfortunately the illness caused stress which resulted in me creating other forms of stress to deal with the stress that I was in. I just had two operations for the same fistula. Today is a good day ... what has changed??? Dealing with stress through meditation and learning healing techniques related to chakra work. Going to a friend and getting their spring water ... drinking lots of it. Removing caffeine from my diet. Eating glutten free foods. Removing sugar from diet and processed foods. Eating sushi, being careful with what I do eat. Rice is good, bananas are great. Making smoothies with super foods. Changed my anti anxiety meds to 5 HTP ... tryptophan also works. 

Smoothie:

dehydrate things such as organic raisons or goji berries  can be soaked the night before

add  1/2 cup to blender add other fruits or veggies

1 table spoon of chia/flax seed powder, 1 tables spoon of cocoa powder (organic), some maple syrup or honey;

1 teaspoon of spiralina, some drops of chlorophyl, 1 teaspoon of hemp with maca (if available), add some organic vanilla powder too for more flavour; add up to 1/4 cup of oils (choices UDO, HEMP, coconut, ava, walnut) blend it for 4 minutes