Newly diagnosed and need some advise!

Hello all,

I found this forum today and thought I would just put myself out there to get any info from people who have experience with UC.  I was diagnosed after a colonoscopy last Wednesday.  I am still kind of in shock.  I started getting symptoms a few weeks after my son was born---but thought I had salmonella or something.  Once I saw blood in my stool I knew that I needed to get it checked out immediately.  The doctor said that sometimes the huge shift in hormones after pregnancy can bring this disease on.  I am so upset and with all the information out there on the Internet I am getting very overwhelmed.  My doctor put me on 2.4g of Lialda---I have not even had a consult with him yet as I am waiting on the biopsy results to confirm his diagnosis...but he said taht he was positive that had had uc proctitis (still confined to the rectum only).  So I have been on Lialda for about 5 days.  I am showing NO signs improvement.  Should I be seeing some sort of change by now or have I not given it enough time?  Should I ask for a steroid enema or some sort of suppository treatment to help me get over this initial flare?  My friend has also given me contact info for a chinese herbalist/acupuncturist who specializes in this disease.  Does anyone have any experience with the Eastern approach to healing this disease?  He claims that his treatment can cure the illness.  Even though his treatment is more expensive than the Lialda, I am thinking about giving it a try to see if it might help....any advise or info would be greatly appreciated.

Thank you!

Yep, get an Rx for mesalamine enemas( they are "retention" enemas used at bedtime) and start using them nightly until your symptoms get better. Then you can use them every couple of days until you see no symptoms. I only use them now when symptoms appear. You should see improvement fairly quickly because they coat the area that is inflamed and bleeding. Pills are easy to take but they don't do as much when things are bad.

There are also suppositories but they do not reach enough area when you are flaring. You can use them when you get better.

Thanks so much for the info. I have a call into my Dr's nurse to see about getting a RX for the enemas. It can't hurt right???!!! I just want to feel better at this point and know that I won't have these symptoms forever...even if the illness is chronic.

I was diagnosed after the birth of my first child, too. It was quite the shock and adjustment. I totally agree with other posters that the enemas are going to be of tremendous help to you.

You didn't mention whether you're breastfeeding, but I wanted to let you know that it is considered safe to use mesalamines while breastfeeding. Your baby may have some diarrhea (although who could tell given what breastfeeding poop looks like!). You can visit infantrisk.org for a lot of info on medications and mother's milk.

It takes a while to get rid of inflammation in the rectum. Proctitis can also cause indigestion (surprisingly true). I would give the enemas a week to get really noticable improvement. You may have to use them for many months to get all of the inflammation gone. And you should know that this disease requires maintenance treatment, too, to keep inflammation from returning. Many of us get down to once/week use of enemas in remission.

I would not seek help from an herbalist at this point. Once you have gotten closer to remission you should be able to experiment with different diets, herbs, etc. to see how you feel. At this point the most important thing is to stamp out the proctitis with the enemas. Mesalamines are safe for long term use and are based on the same chemical as aspirin (from willow bark!).

Everyone is different as to how long it takes to get to remission. Part of it will depend on how compliant you are with taking your meds. A large part of it will depend on what caused the disease for you - since no one knows what really causes UC, no one can really say how to get rid of it. You will find dietary mods and other changes that help you, but that might take a while.

Since I was diagnosed after the birth of my 1st child, and not really diagnosed completely until after the birth of my 2nd child (!!), it took me a heck of a long time to get to a complete remission. In my opinion, a complete remission means no symptoms. None. At all.

At this point I have regular bowel movements (although I still have some motility problems which means I will have no BMs for two days, and then one day of 2-3 BMs). I attribute this to damage to my colon from chronic inflammation. At my last scope (about 10 months ago) I had NO inflammation, which was awesome. First time for me (3 scopes total in 11 years of diagnosis). I have little to no joint pain (a major part of the illness for me) and my nutritional status is excellent (no anemia, vitamin D levels are normal). It took me about 9 years to achieve this.

I know you can do better than me. I didn't find this forum until about 3 years ago. I learned a ton from everyone here, and you will too.

Unfortunately, there is no quick fix or cure for this disease. Anyone who tells you there is, is a quack.

Don't worry AT ALL about taking mesalamine (orally or rectally) when you're breastfeeding. I have a 10 week old daughter who has only gotten breastmilk (at least so far!) and she's thriving. I've been on Apriso (same active ingredient, mesalamine, as Lialda) and mesalamine enemas the entire time and was also on them when I was pregnant.

As for diarrhea, there's be ONE case reported of bloody diarrhea in an infant whose mom was taking mesalamine.

I was also diagnosed (except with pancolitis) after my son was born. I got so sick that I ended up losing my supply when he was just 8 weeks old. So definitely take care of yourself and take your meds! But, if you find that it's too hard to breastfeed when you're so ill and need to switch to formula, be kind to yourself. My son is a happy, healthy, smart 4.5 year old now, so formula didn't hurt him one bit. ;)

Hi INSOFLA---

Thanks so much for the reply.  I see in your ticker you do the Paleo diet.  I stumbled upon the Paleo diet yesterday in my research and am very interested in getting it started.  I honestly had no idea how horrible grains and dairy were for the digestive track.  My husband has been wanting me to do it for years and I just ignored him...I thought it sounded too hard to make a diet change like that.  I loved the convenience of convenience processed food...not to mention I am a complete carb head.  But the more I am reading on it the more I think I could totally do it.  I think I got him on board last night, and while I don't think it will be easy (with my 4 month old and 2.5 year old) I am pretty confident it will help my UC (and hopefully my asthma/seasonal allergies).  Sounds like it has helped many people!  How long have you been on the diet?  How long until you saw results for your UC?  I will look into the LDN you mentioned.  I have not heard about that before.  Was it fairly easy to get your DOC to prescribe it for you???  I will also see about getting him to prescripe the VSL #3 probiotic.  So at this point I am on the Lialda.  Do you think I should discontinue it and substitute the LDN?  Since I have caught this while it is still mild do you think that I should implement the L-glutamine or slippery elm???  Thanks so much for your advise and knowledge.  I would like to stop this before it gets any worse and am so grateful that you have "been there done that" and know what might actually work as a long term solution instead of just taking a pill everyday.

keep taking the lialda -

I think it's ridiculous that he wouldn't prescribe rectal mesalamine or probiotics. I would start looking for a new DR.

My first GI was even worse - he told me I had IBS (even though I went to see him after 6 weeks of rectal bleeding) and only did a sigmoid scope after I was symptomatic for a year. Even he gave me rectal meds though, after he found the proctitis.

Stoopid DRs can really mess up your day.

Scroll down to the middle of the page and read about treatment with mesalamine: http://www.mayoclinic.com/print/ulcerative-colitis/DS00598/DSECTION=all&method=print

Your DR should certainly be aware of the most basic facts about treating proctitis due to UC.

Ditto that your doc is pretty much not following standard protocol
for not prescribing rectal meds to treat proctitis. I hope you find a new one.

Mia,

Sorry it took me so long to answer your post.

I agree, you definitely need a new doc - one who understands about probiotics and mesalamines.

Now, as to your questions:

How long have you been on the diet?  How long until you saw results for your UC?  I will look into the LDN you mentioned.  I have not heard about that before.  Was it fairly easy to get your DOC to prescribe it for you???  I will also see about getting him to prescripe the VSL #3 probiotic.  So at this point I am on the Lialda.  Do you think I should discontinue it and substitute the LDN?  Since I have caught this while it is still mild do you think that I should implement the L-glutamine or slippery elm??? 

I have been on Paleo for approx. 2 years now. I started out with SCD and then went to Paleo, which IMO is much much better. I started seeing symptomatic relief within 5 days of starting Paleo. Your doc should be prescribing VSL #3DS ( only available by prescription), but it seems he doesn't know what he's doing ( ...waiting for the disease to progress... ridiculous!). I do believe you should start with the l-glutamine and slippery elm right away, as I believe these will be very good for you.

As far as the LDN is concerned, you need a holistic or open doctor. And, yes I do believe it would be good for you to be on it. Email me and I'll explain about it.

And let me know if you have any other questions.