Checking in

Hello,

Just wanted to see how everyone is doing...

I am still experiencing symptoms. They are terrible some days and not-so-bad other days. I am hoping things improve soon.

Please report on your status

nssg, I hope you get some improvement soon.

I am three months into treatment and my symptoms have improved tremendously! I take oral mesasal and Mutaflor. My D is gone...YAY! (I had almost ten straight months of daily B and D) Seeing looser stool with some blood during my cycle, feeling some urgency and having some nausea and the odd twinge in the gut. I'm just working at figuring out what foods I should avoid.

I'm experiencing increased joint pain, and blurry vision, also headaches. I think this might be from the Mesasal, but not sure if I should just not worry about it because my UC symptoms are improving. I'm still lacking energy even so my bleeding is waaaay down.

Thanks for asking!

Lodi, do you attribute your improvement more to the Mesalamine or Mutaflor? I might have to consider a trip to Canada to try the Mutaflor, as I've heard it has helped quite a few folks.

When I was first diagnosed in 2009, I started with Lialda+Canasa which led to a pretty good remission for a few months. Eventually I started getting a lot more bleeding and was put on 40mg of Prednisone. The bleeding didn't seem to stop hardly at all even at that steroid dose. Eventually through trial and error or luck I realized that when I stopped taking the Lialda, the bleeding vanished in a couple of days.

Since then I tried Apriso and Asacol, and each caused increased bleeding, D and flu symptoms like fever, chills and extreme fatigue. In fact I tried Asacol HD for the first time this week and it seems to have thrown me back into a full flare after having seen some improvements from Terramin clay. Suffice it to say, I will no longer be trying any mesalamines.

I imagine Mutaflor will eventually be reclassified and allowed again in the US at some point, and I'm hoping that new drugs we have on the near horizon could be another option. I am of the belief that within 10-15 years or maybe sooner, technology will have advanced so rapidly that chronic illness like this will no longer be an issue. Perhaps that's wishful thinking, but I often joke about installing my future robot-colon and eating pizza all day long. It's a nice thought.

Currently I am trying to give LDN a chance to work, I'm almost 2 weeks in, and I think going gluten free now will help as well. I think I will also get the ball rolling on the Remicade process in case it comes to that over the next couple of weeks.

Honestly it seems like most of the symptoms I am having right now are more IBS-like, though I know the two are often similar. Might schedule some more tests (never had a stool test for c diff) or find a different doc altogether.

It's really difficult when trying different meds+supplements, cause if you do see any improvement its extremely hard to tell what might be helping or hurting.

I took Imuran for about 6 weeks, at which point it began to give me terrible abdomen aches, which I believe was pancreatitis. I had to stop taking it, I had just barely gotten to the therapeutic range if at all. I tried Proctofoam once, and it had little effect and was prohibitively expensive considering its effectiveness.

Sometimes I wonder if our bodies are more susceptible to food poisoning and thats what could be causing these sudden "flare ups" that are so bad. That has been the way its felt for me in this latest bout.

I remember there was a point in this disease where I could deal with most of the symptoms for long periods of time, but eventually the fatigue sets in and that becomes the biggest challenge. I believe it is both a physical exhaustion and mental fatigue that is tough to bounce back from.

Wait...what do you mean you can't keep up Remicade? Did you start on it recently? Or did I miss something?

I'm still doing good Uc wise. Still in remission. But I have some sort of virus now. It's a weird one - I feel fine, a bit more tired. No fever, had some chills the other day but it feels like I swallowed a sock and I lost my voice yesterday. Some "chuckiness" in my sinuses but it comes and goes. Whatever I have, I hope it goes away soon! This is annoying...

neekap,

How long have you been on the LDN, and which type (oral with which filler vs. transdermal)?

As to your fatigue, have you had your Vit. d l and b12 evels checked recently?

I am doing good. Not sleeping great so I've been a bit more tired but that seems to be the norm for me. Still dieting but not losing any weight. I haven't been as dedicated as I should be but one does get sick of it. LOL Can't believe its almost June and my son only has 11 more days of school. He's happy, me not so much. LOL Kidding he's a good kid. Just wish our pool was opening earlier than 4:00. Gonna be a hot one again today.

Hi everybody,
I am still doing very well on Terramin (1tsp) and Pascalite (now just 1tsp too). The only 2 things I do not eat-meat and dairy. Also, I do not eat junk food (I have never eaten it anyway) and do not go to restaurants. Do not trust them with my food anymore!
Neekap,
if you tried Terramin and it worked some but not enough, get Pascalite clay. Remember, I took 1tsp of Terramin and 2 tsp of Pascalite as a treatment for about 2 months. Pacsalite has an ability to releive the pain and cramps, plus has a strong anti-bacterial properties. If you are thinking about antibiotic therapy but can not get a doctor to prescribe them to you, Pascalite clay could be a good option.
Another thing, if Mutaflor is very hard to get from Canada and you really want to try a strong probiotic, I think you could try Prescript Assist soil based probiotic. Not many peple heard about it. You do not need to refrigerate it and these bacteria will not die because of the stomach acid. I took it for a while and still have 3 bottles for the future.
Here is some information about it.
Prescript-Assist Probiotic is backed by five years of scientific, doctor-lead, double-blind, peer-reviewed clinical studies. These clinical studies indicate that the unique Probiotic – Prebiotic blend of Soil Based Microorganisms (SBO) found only Prescript-Assist outperformed other popular Probiotics (including Lactobacillus and Bifidobacterium).

Advantages of Prescript-Assist:
•Better survival in the gut
•Out-competes established negative bacteria
•Improves immune system
•Breaks down toxic chemicals

Prescript-Assist Clinical Studies Indicated Scientifically Significant Reduction in the Following Diseases and Symptoms:
1.Irritable Bowel Syndrome (IBS)1,2
2.Nausea1
3.Indigestion / Flatulence14. Colitis1,2
4.Antibiotic Induced Gastritis (during antibiotic therapy)2
5.GI Tract “Reconditioning” (post-antibiotic therapy)2
6.Diverticulosis2
7.Chrohns2
8.Vaginitis2
9.GERD2
10.Human Bacterial-Diarrhea (the most aggressive diarrhea caused by bacteria associated with 3rd world countries)3

http://www.perfectsupplements.com/v/ClinicalExp.pdf
http://www.perfectsupplements.com/v/IBS.pdf
http://www.perfectsupplements.com/v/Diarrhea.pdf
http://www.ncbi.nlm.nih.gov/pubmed/16117982

My status right now is... since I'm on cortisone my bleeding almost stopped, have some blood once in a while. Mucus stopped, so no urgencies anymore :) D stopped, it's formed but that's since I started SCD.

All in all I gained some energy and my weight is stable. Tapering off Cortisone at the moment and staying on Mesalazine, Humira and SCD.

I'll be on vacation later today to Las Vegas and after this to Los Angeles. I'll be back Monday evening. I hope everything will go well.

I hope you get better soon, notsosicklygirl.

Journeytoheal,
I am so happy you fell better!
When I started on the clays I stopped all the supplements, including the probiotics. Why? In my opinion it is better to let the clay to kill and take the bad bacteria and candida out of the body first. Say 1-2 months. For me it was 2 months already, so I cut the clay to 1tsp of Terramin and 1tsp of Pascalite per day(I used to take 2tsp of Pascalite). Now I think I will start slowly introduce the Prescript Assist probiotic into my body.
If you will not cut you BMs to max 4 per day in 10 days, I highly recommend to get Pascalite clay too and take 1tsp of Terramin and 2tsp of Pascalite clay per day.
P.S. You can take probiotics while taking the clay, just give it 1 hour or so time between them. The clays will not harm the good bacteria. I just think it is better to give the clay time to kills the "bad guys" first and it is easier on your body too.

Journeytoheal,
yes, I would get Pascalite. In fact when you get it try to do what I did : take only Pascalite for 1 week (1tsp 3 times per day, only the "clay water" for 3 days and then drink all of it). After that week, take 1tsp of Terramin and 2tsp of Pascalite per day. You should feel dramatically better very soon. Pascalite is sold only at www.pascalite.com or in Canada at www.pascalite.ca
I do not think you can buy Prescript Assist in any health food store, only online. It should be between $40-$50 for 90caps.
Another good probiotic you can consider, that is sold in majority health food stores is Dr. Ohhira probiotics. They are well tolerated and they actually will make it to the colon. You would have to take at least 4caps per day for 1 months to really see the result. It is not a cheap probiotic, especially if you take 4 per day.