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Posted 8/25/2011 7:11 PM (GMT 0)
Azathioprine (Imuran) worked well for me. I had to have blood work done every 45 days or so to check liver function. I tolerated it well but my son who has UC also throws up just looking at the stuff. It was helping me but aggravated diverticulosis badly. You can see my post where I recently had surgery to remove my sigmoid colon. Knowing what I know now, I wish I had opted for surgery when I was first diagnosed with UC. I kept reading over and over that removal of the colon "cures" UC. Granted, colectomy has its own issues, but not enough for me to want to off all the UC meds and the pot all the time.
Posted 8/25/2011 11:10 PM (GMT 0)
InSoFla, thanks for your concern. He has agreed to continue to seek treatment. Kind of a mini breakthrough today, but a VERY long road ahead. I forgot to mention in my original post that my brother has been 6 months clean, so I am more than prepared this time.

I just received my VSL#3 DS today and I'm doing the Rowasa enemas and Canasa suppositories every night. Also still on the SCD diet. After the 4 BM's this morning I took Lomotil and I've been fine the rest of the day. Had a 5th BM after dinner and there was no blood...no diarrhea. Can't believe what stress does to us.

My dr wants me to stay on 40mg of Pred for another week, but I'm not sure what I want to do. Haven't received the Slippery Elm yet or the Psyllium seeds. I think once I start the probiotics and slippery elm, I will notice a diff.

Thanks again for checking in :)
Posted 8/26/2011 2:11 AM (GMT 0)
Thinking of you mamabee.....you are an awesome mom and those little children of yours are so lucky to have you. Not everyone is strong enough to put their needs first. Wishing you strength and success in the days ahead, both with your health and home. I am sure it will not be easy. Hearts, hugs and prayers coming your way! Keep us posted.
Posted 8/26/2011 3:06 AM (GMT 0)
Mamabee - Every flare I've had has come during a very stressful time in my life. My wedding, a big move from Georgia to New Jersey, and then after having both my girls. It definitely does trigger flares! Hang in there! Keep doing what you are doing and it will pay off! I started the psyillium seed, VSL #3DS and the Rowasa and am seeing a big difference the past 2 days. You may have times here and there where you feel you are slipping back into the worst of it, but you will get it under control! I'll say a special prayer for you and your family tonight! You are not alone! We all have stuff in our lives that stress us out! This happens to be yours, so be strong and know that this too shall pass!
Posted 8/26/2011 11:56 AM (GMT 0)
Thanks you all for all your kind words and huge support. It means more than you know. I have so much support from family and friends this time around, so it's helping me get through all the daily struggles.

He went to a meeting last night and hasn't had a drink since Sunday (that I know of) and it's just weird having him around and talking as much as he is. Last night we went to bed together, which we haven't done in a long time and it just feels weird. If this can continue, I will be the happiest person alive. I've been wanted this for 11 years.

My mom took my 3 yr old daughter to have a sleepover at her housework my cousin and aunt, so she was in her glory! Knowing that she got a break and had so much fun, really makes me happy. This was her 1st overnight without me, so it was a little sad, but now that I know she can handle it, she can go whenever she wants. My 9 month old is a piece of pie when she's alone. We all needed a break, so I feel good this morning :)

Thanks again for all of the support!
Posted 8/26/2011 2:36 PM (GMT 0)
So, I just received all my supplements in the mail!  I have

 VSL#3,

Chia Seeds

Maca Root Powder

Slippery Elm Bark

Vit. K

Pro Optima Whey Protein

Vit D (which I have to wait to get my levels tested first)

Omega-3

Boswellia

Women's Multi-Vit

Ester-C

Obviously, I can't start all these at once, so I'm thinking to start with the VSL#3DS and the Slippery Elm Bark Powder.  I usually take my multi-vit and vit C everyday, so those are already started.  Does this sound ok?

Are there any specific times to take these? With or without food? Etc? 

Thanks for your help!

Posted 8/26/2011 11:01 PM (GMT 0)
mamabee,

You're off to a good start.

I would suggest you start with the VSL#3 DS + slippery elm bark powder.

I take them together: put 1 tablespoon of slippery elm powder in about 2 oz of water and then immediately add VSL#3, stir together well - it will thicken VERY quickly - and drink it down. If it thickens too much, you can just add a little more water. I take mine after meals, 3 x per day.

Let me know if you have any other questions, and let us know how you make out.


 

Posted 8/26/2011 11:02 PM (GMT 0)
mamabee,

p.s. make sure you refrigerate both the VSL#3 and the slippery elm as well.

Posted 8/27/2011 12:44 AM (GMT 0)
Thanks InSoFla!
Posted 8/27/2011 2:31 AM (GMT 0)
Glad you received your supplements! I'm also glad your husband is getting help. Have a good weekend! ((hugs))
Posted 8/27/2011 11:13 AM (GMT 0)
Thanks mom2girls...hope you have a great weekend as well :) ((hugs))
Posted 8/28/2011 4:35 PM (GMT 0)
mambee-

Totally understand where you are coming from.  My husband and I just went through the same thing last Christmas and as you know there is help, hope, compassion and love.  It took me a long time to figure out that I needed to take care of me...so happy that you are on the right road of supplements, etc in taking care of yourself.

The mind/body thing is sooo linked, please feel my ((hugs)) too as you go through this journey with your husband.  It's a disease just like any other disease and he is very lucky to have you in his corner. 

As they say "Take it a Day at a Time".

Blessings to you and many ((hugs)) tongue

Also it will be ok, I will be thinking of him as well wink

Posted 8/28/2011 6:29 PM (GMT 0)
Thank you so much Hopefuly4uc...it means so much to have every kind of support during this time. It is definitely a one day at a time way of thinking! He is still in that mindset that he doesn't have a problem b/c all the stories he's heard in the last 4 meetings are so extreme, but I just keep reminding him that that's why we're taking the steps NOW, so we can avoid the extreme!

I also remind him of all the dumb, hurtful things he's done up to this point and I'm like, "Why don't you share those stories?" He has to realize it in his own time and hopefully 90 meetings in 90 days will help...on top of getting him to a good counselor.

I hope you have had a positive outcome with your husband and I'm so glad to see you're improving with the help of LDN! I really want to try that if this Prednisone doesn't jumpstart this remission for me.

Thank you and ((hugs)) back with many blessings to you as well!
Posted 8/28/2011 8:32 PM (GMT 0)
mamabee,

How are you doing with the supplements?

What have you tried and how? And how it has affected you?

Posted 8/29/2011 12:34 AM (GMT 0)
I've started the VSL#3DS and the Slippery Elm Bark the last 2 days only after my 1st morning meal. I want to take it slowly. I've noticed I feel more bloated and gassy, but nothing problematic.

My stools have been more formed and no blood the last 2 days, but I'm still on 40 mg of Prednisone. We'll see how I feel on Wednesday when I start to taper!

When should I up the VSL and Slip Elm Bark?

Thanks for checking in InSoFla!
Posted 8/29/2011 12:23 PM (GMT 0)
mamabee,

I think it's good you're starting slowly.I wouldn't worry about the bloating and gassyness right now, I think it's your body adjusting to good probiotics and it may take a few days until it colonizes and shifts things. But the fact that your stools are more formed and without blood is a good sign.

 I assume that means you're only doing it once a day? With 1 packed into 1 tablespoon of slippery elm?

I would stick with that for another few days, and then go to 2 x times per day for a few days, and then go to 3 x per day.

Go slow with the prednisone taper.

And let me know how you're doing. Take care.

Posted 8/29/2011 1:43 PM (GMT 0)
Doing just that InSoFla! Thinking I should do 40 to 35mg and so on for the Prednisone taper.

Yes, doing 1tbsp of slip elm and packet of VSL. Right after breakfast.

More formed stools today and no blood!

I'm really looking forward to my next colonoscopy, which won't be until I can get this under control, but I feel like some residual bleeding may be from a hemorrhoid caused by my last pregnancy. She was almost 9 lbs and I delivered vaginally so she did a number on me!
Posted 8/29/2011 10:19 PM (GMT 0)
mamabee,

When was your last colonoscopy? Yes it could be hemorroid.

9 Pounds - wow!

Posted 8/30/2011 12:39 AM (GMT 0)
Prob right before I got pregnant last Feb. Due for my next one in Sept, but they want to get this flare under control first.

Very eager to hear what's going on in there!

Another good day...no blood/diarrhea or urgency. Only 3 BMs this morning!

Just very bloated around this time the last 2 nights.
Posted 8/31/2011 1:52 PM (GMT 0)
Got an appt with a Dr that prescribes LDN for Sept. 12! So excited. Starting to taper Pred today...should I go down to 30 or 35? I'm thinking 35 b/c I want to take everything slowly.

Last couple nights I've been VERY bloated and have gotten up in the middle of the night to use the bathroom, so I took Lomotil last night and was able to get a good night's sleep. Not sure what's going on there....I have been eating a lot during the day between lunch and dinner and I don't use the bathroom more than 2 times in the morning. My colon is probably not used to having so much going on in there lol.
Posted 9/1/2011 12:20 AM (GMT 0)
mamabee,

I am so glad you have an appt.

Sept. 12th is not far away.

Regarding the prednisone, I think you're right about going slow and tapering to 35mg.

I am sorry about the bloating, and yes, I believe it's like you said: My colon is probably not used to having so much going on in there


It's going to take a little time for the good probiotics to populate your gut and for your colon to get used to it.

But it sounds like you are having less symptoms of D, blood, urgency, BMs, etc... no?

Posted 9/1/2011 12:35 AM (GMT 0)
Def less symptoms of D, urgency, blood, and BM's so I am more confident going into this taper than I was last week.

Tomorrow I am going to add the slip elm and VSL after lunch...up it to 2x's a day now that I know I can handle the 1x.

So excited for Sept 12th!
Posted 9/1/2011 12:40 AM (GMT 0)
mamabee,

I look forward to hearing about your appt. on Sept. 12th.


 

Posted 9/6/2011 3:05 PM (GMT 0)
Just wanted to post a quick update and get some insight.  I weaned to 30mg Pred last Wednesday and all was well until Saturday morninig when I woke up having multiple, painful, urgent, bloody, loose BM's.  about late morning, I got my period.  Let me just say, I get really bad periods and the 1st 2-3 days are awful with cramps and bleeding.  I took Lomotil at this point bc we had family over and so much to do, so I needed a break!

Sunday morning was pretty much the same, but I took Lomotil since we had Church.  I was fine the rest of the day.  I did have eggplant for lunch and dinner AND I cheated :(  Had some yogurt covered vanilla cookies from Trader Joes.  Between the Pred and my period, I was dying of cravings! 

Well, Sunday, all night, I was extremely gassy.  Woke up around 4am and just had gas for about 1/2 hr.  Around 6am I started with the same BM's as Saturday morning.  A lot of pain, burning, some formed, some diarrhea, couldn't really tell the amount of bleeding or if there was any b/c I also have my period (sorry if TMI).  Didn't take Lomotil b/c we were home all day and my Mom was here to help.  I also wanted to see how many times I'd go during the day.  Probably added up to between 6 and 8.   

Took Lomotil last night so I could sleep and I did...needed that!  Woke up this morning to more pain, urgency, but soft, formed stools and I don't see blood (other than from my period still).  I am just so confused.  Did I just mess myself up b/c of the cheating and I know eggplant has not agreed with me in the past.  Is it from the aggravation of my perod?  Is it b/c of weaning off the Pred?

I have a GI appt on Friday and am planning on calling today, but I know they're going to say go up to 40mg of Pred again and I'm just not feeling it.  I have my appt on Sept 12 for LDN, so I'm just not sure what to do.  Should I go up to 40mg, get stable, start the LDN and go from there or just stay on the 30 until then? 

I am still able to hold the Rowasa enemas and Canasa suppositories at night...except for Sunday. 

Posted 9/7/2011 11:25 AM (GMT 0)
mamabee,

I am sorry to hear your problems are being compounded by your period.

I would say, perhaps wait another day and see if it resolves (due to your period and the cheating). If eggplant hasn't ever agreed with you before, it certainly could be the culprit, in addition to the period problems too.

If in another day or 2, you're still in the same place, I would think about going back up slightly to prednisone - so you can stabilize until your appt. on 9/12.

Let me know how you do.

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