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Ulcerative Colitis
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Posted 6/27/2013 12:35 PM (GMT 0)
I have been in a bad flare for over a month now. I requested some more Rowasa enemas. After using those and being given another round of prednisone to start on, I started to get a little better. I was only having 1-2 BMs a day which I had been going once/hour. Then Dr. wanted to still do colonoscopy (hadn't had one in 5 years) After the scope I have regressed. All of the progress I made is gone. I have been so sick the past week. I am vomiting and have D still. I have been having bad pain in my upper abdomen and kindof in the right side, which is very unusual to me. I have been extremely fatigued and have lost 13 pounds. I can hardly eat and I am dehydrated. I am just feeling so frustrated, which I am sure we have all felt at some point. My next remicade treamtment isn't until July 8 and Dr wants to wait and see how I do with it before doing anything else. He says if I do not respond to it he is looking at surgery - removing bottom 12 inches of colon. I am only 24 years old and I feel like I haven't even tried all of my options to be looking at surgery yet. Im not opposed to it if it is necessary, but I feel like it is not yet. What do some of you more experienced UCers think?
Here are my meds currently:

20 mg Prednisone (just started new round again yesterday)
Remicade (every 8 weeks, but will be every 4 weeks after next treatment)
Delzicol - 400 mg 3 - 3 times a day
Rowasa Enemas nightly, but having trouble holding them
Zofran for Nausea - but I still have been vomiting some so it isn't helping the greatest

Post Edited (Angela Paige) : 7/4/2013 8:00:35 PM (GMT-6)

Posted 6/27/2013 12:54 PM (GMT 0)
Angela,

I am sorry you are in such a state of suffering.

It is not uncommon after a colonoscopy to get worsening symptoms for a few days, but you are saying it's now over a week and you've lost 13 pounds?

You need to speak to your doc, not the surgeon. A surgeon just wants to cut, that 's how he makes his living.

IMO, surgery is a last resort or only for life saving purposes.

Although they are many on this forum who will tell you that surgery gave them their lives back.

I would suggest the following:

go on bowel rest for a few days ( take 4-5 protein shakes made with almond milk) to give your colon a rest

And what about diet? Can you cut out gluten and dairy and see how it goes?

WHat are your vitamin d3 levels at? There's a big correlation between IBD and low vitamin d3.

Also, what about natural supplements like l-glutamine, slippery elm powder, and probiotics?

 

Posted 6/27/2013 1:09 PM (GMT 0)
It is my GI who is discussing surgery, but I believe he does the surgeries too. It has been in the month period that I have lost the weight. I usually take a probiotic, but ran out and haven't gotten anymore yet. do you have a recipe you would suggest for the protein shakes? I am definitely willing to try any ideas. I actually was going to by some slippery elm powder but had waited until I got paid because finances have been tight. Thanks!
Posted 6/27/2013 1:55 PM (GMT 0)
Did you get worse after running out of the probiotic?
Posted 6/27/2013 2:23 PM (GMT 0)
Insofar makes great points! Try everything first
Posted 6/27/2013 3:12 PM (GMT 0)
I have gone through the same thing you are going through only it has been over a year. I am
now doing great. I decided I would try anything, within reason, that had any possibility of
success. I couldn't get any worse than I was, so I tried CCHERBAL a Chinese herb and it has
worked so well for me it's hard to believe. Some other posters on this forum will knock the
product even though they have not tried it, but for me it's literally been a life saver. I have a
detailed post under the topic CCHERBAL and Natura Alpha for more info on my experience with
diets and meds over the last 15 years. It's worth your time to at least check the product out.
Like I said it's working for most of us who have tried it, so maybe it will also help you.
Posted 6/27/2013 6:10 PM (GMT 0)
Well I had a bad flare up in January which is when I started Remicade treatments. it was when treatments were spread out longer that I started flaring up again. I ran out of probiotics sometime in there too. I had labs done when I went to the ER Tuesday but I really do not even know what all they checked for. I doubt they check D3. Should I just request this from my GI? Thank you all for all of the help!
Posted 6/27/2013 6:27 PM (GMT 0)
Angela,

Yes, by all means insist on getting checked for vitamin d3 levels.

Based on the research I've done, good levels for those with auto-immune disease should be around 50-70 ( my own levels are in the high 60's).

As far as the protein shakes, I follow this recipe for Morning Glory Shake:

http://cureforulcerativecolitis.com/morning-glory-shake

I love this shake and take it every day still (despite being in remission now).

But when I wasn't and when I would be on bowel rest, I had 4-5 of these a day ( but would adjust the l-glutamine for a max of 15g per day).

As far as slippery elm powder, make sure it's organic, and it's very important IMO, it coates the whole intestinal tract.

Let me know how else I can  be of help to you.

P.S. As far as probiotics, do you think you could get your GI or GP ( based on what you've already said about the GI, I doubt he'd be open to it since he's so pro-surgery already) to prescribe the  probiotics called VSL #3 DS for you? If so, these prescription probiotics would most likely be covered by your insurance with a small copay.

 

Posted 6/27/2013 8:04 PM (GMT 0)
Thank you SO much for all of the suggestions! I am about to call the doctor's office right now to request checking my d3 levels. I will also ask about the probiotic. I feel that he may be open to it, but not sure. He has a financial interest in our local surgery center, and up until recently I have loved my GI, but I just feel he is really pushing surgery too soon. He said to my mom after my scope that most with UC have to have it done within 10-15 years. Do you think this is accurate?
Posted 6/27/2013 8:08 PM (GMT 0)
InSoFla,

Sorry I have so many questions that probably seem silly. I have not heard of some of the ingredients to the protein shake. Should I expect to get them online, a pharmacy, a health food store maybe? Thanks for your help again!
Posted 6/27/2013 8:44 PM (GMT 0)
He said to my mom after my scope that most with UC have to have it done within 10-15 years. Do you think this is accurate?

As quoted I do not agree with this statements accuracy. This has been discussed here and think the figure was 25% of UC'ers eventually have surgery no matter the time frame. Perhaps your GI meant that people that do not respond to Rx meds have surgery within 10-15 years, that would be more accurate.

Since your GI is the one recommending surgery that he has a financial interest in you should get a second opinion from the best UC GI near you. You'll feel like you are getting an unbiased opinion. You may hear that you should consider surgery from the second doctor or they may have other ideas.

You should start by getting copies of your latest blood tests and your latest colonoscopy and start a home file for yourself. Call and ask for copies from the office manager, this is a normal request. Take these, plus a short history of all the meds you've tried, to your 2nd opinion GI. Doctors respond best to seeing lab reports and only then do they ask about your symptoms.

Good luck. Surgery is not terrible but you have to get there mentally first and feel you are ready to make that decision. No one else should talk you into it.
Posted 6/27/2013 10:47 PM (GMT 0)
Thanks again! I am totally open to surgery when I know it is the BEST option for me. I just do not want to go there if I do not feel I really need to and at this point I do not feel that. I totally am not against it if I can't get some relief through trying some other things and even just giving my meds some time to work. Since I got worse right after my colonoscopy I am hoping things will settle back down given some time, since they had gotten better before the scope.
Posted 6/27/2013 11:21 PM (GMT 0)
Angela,

Your questions aren't silly at all. Every question is good!

I get all my supplements from the internet.

Some from amazon, some from others.

Slippery elm powder is impt to get as organic powder - you can get it from Mountain Rose or Pacific Botanicals, both excellent sources I have used.

Maca Root Powder, as well as Chia seeds, can be gotten from Mountain Rose as well.

L-glutamine amino acid powder and the d-ribose powder as well -  I get from nutrabio.com

Almond milk I get from local supermarket, and the Mercola Pro-Optimal Whey I get from the mercola.com site.

Hopefully your doc will also prescribe the VSL #3 DS probiotics for you. I would suggest asking him to prescribe it @ 4 sachets per day, so this way you'll have some leeway, i.e. when flaring you can take 4 per day and when you're not you can drop down to 2-3 per day.

My email is in my profile, feel free to email me and I will be glad to help you.

Let us know how you make out with your doc.

I quite agree with Ima you need an unbiased opinion from a doc who will not operate on you as to your next steps.

 

Posted 6/27/2013 11:34 PM (GMT 0)
I would like to add that 20 mg of PRed is not enough if you are flaring that much. I know we all HATE the steroids , and for me= the darn things dont' work eitherway... but still, you should probably by on minimum 40, but even 50 mg of steroids if they are going to do anything at all... IMO
Posted 7/1/2013 2:53 PM (GMT 0)
I totally agree about the pred. He has given me 40 mg before and it worked ... When I called and asked for another round I asked if he could up the dosage too but he only called in 20 again. :(

You all have been so helpful thank you so much! I was just feeling so frustrated.

Also I forgot to say my colonoscopy actually showed improvement from when i was diagnosed. Just the last 12 inches where before it was all over and he said I was at risk of rupture because i was so inflamed. So if its gotten better over time I guess it makes me think why would I give up so easy this time. This is the first time I've flared so badly since being diagnosed
Posted 7/4/2013 1:39 AM (GMT 0)
Update: I got my results of my D3 Levels back today and it was 32, which doctor says 30-100 is normal so it is fine. What do you think? I know that InSoFla said it should be 50-70. The good news is I am feeling a lot better...still flaring for sure, but atleast I am improving right now.
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