Can't quite get to remission

 I was diagnosed August 2006.  I was on Dipentum, Enotcort  and Mesalamine enemas for almost 2 months.  During that time my dad died and I ended up pregnant with twins.  I quit all the prescription meds and researched probiotics and alternatives.  I lost the babies in December.  In January I went full force with watching my diet, probiotices and alternative supplements. 

By April I was doing much better, no urgency, no d, no cramps, more energy. I still had blood in my stool once a day. I was hoping to have this under control by August, but I am not quite there.  I went to my doctor,  a Doctor of family practice and osteopathic manipulative medicine.  He is very open minded to alternative options that I have tried.  Since I still have some blood he suggested I try Asacol.   1 pill twice a day for 1 week then increase to 1 pill three times a day for a couple of months to see if it helps.  Well I have been doing this since July 25 and it really hasn't helped. 

Up until April/May I was doing vitamin E enemas and an occasional mesalamine enema, but with having a normal bm in the early morning I can't get the enemas in.   I don't have time to do an enema in the morning after my bm. 

 

So anyone else with similiar symptoms or any one with thoughts on what else can I do.  I am getting to the frustration level again and I was really hoping, praying, and believing that I could heal myself without the prescription medications. 

 I am going to schedule a colonoscopy in December with a GI doctor. I am looking forward to seeing what is going on in my gut.  Ane this time I will know what to expect and what to ask the doctor. 

 

Thanks,

Darlene

 

 

 Primal Defense, Digestive Enzyme, and FYI

I also take Glutamine Caps, DHEA, Slippery Elm ,  Capryl, Turmeric & Bromelain
Omega 3- Fish oil,  Cal-Gel, and BioK-plus Probiotics

multi-vitamin, vitamin k, Biotin, vitamin D, vitamin B
AloeVera juice & gel
Activia

I was just diagnosed in August (been in a flare since June) and my GI has me on Asacol 3 pill 3 times a day and I have seen a huge improvement. I am also using mesalamine enemas every night. Basically I'm fighting the inflammation from both ends :) haha Maybe you should talk to your GI about upping your dosage of asacol?

I had a feeling that's what I would hear. Actually I feel pretty good. I am a little stressed with returning to school, I expected that. I just have that little bit of blood in my stool in the morning. Sorry if this is gross, but it is at the beginning of the stool and the end. Most of the time the rest of the stool looks normal. On the weekends I do an enema I don't notice as much blood a few days after. I just don't feel the prescription medications actually heal the ulcers. I think they just mask the symptoms because when you stop taking them symptoms start again. I want something that heals the sores. I just hate the prescription meds and yesterday I started to notice I was having that light headed, dizzy feeling like I did when I was on the medications last year.
Okay, so if I ask my doctor to up my Asacol to 3pills 3 times a day how long will it take before I am in remission? Will the Assacol actually heal the bleeding ulcers? I don't want to have to take prescription meds any longer than necessary.


Darlene

SnookieBow

Having read your posts and assuming you have either UC or CD and being determined to try anything to bring you to (or as close as possible to) remission, I would suggest the SCD (Specific Carbohydrate Diet).  You probably have heard about it, but if you didn't and are interested, google SCD or "Breaking the Vicious Cycle" which is the name of the book that totally explains and describes this diet method.

Of course following the diet does not mean you can stop taking the meds prescribed by your dr. Most of us SCD followers keep taking meds along with the diet. Others after a while are lucky enough to stop all meds and just follow the diet. We are all different.

I must warn you that this method demands total adherence to the diet and only those totally comitted to it, with enough willpower may achieve good results. But if one can do it, I know it really works and - no side effects.

I am doing very well and know the diet was the most important thing I have done to achieve an amost-remission condition I presently have.

Bob59

Okay, to answer some questions and respond to some of the post.  I have UC. Yes, I have seen 2 GI doctors.  The first one did my colonoscopy and put me on the Entocort, Depentum and Mesalamine enemas.  The second GI I saw wanted to put me on Asacol, but I was pregnant at the time and refused. 

Yes I have tried many of the suggestions on the SCD, except I believe Aloe Vera Juice has natural healing and detoxifying powers so I drink it. At least 4 oz a night.  I eat Stony Fields, Horizon or Brown Cow yogurt.  I decided to quit the Activia because I noticed the high fructose corn syrup.  Other than that I have not had a bread, wheat or pasta product in over a year. My diet has been a lot of yogurt, spinach, asparagus, sauerkraut, chicken, fish, turkey, Maranatha creamy peanut butter and raw honey, eggs, soy milk, the green vegetable juices, bananas and applesauce.  Yeah I know there are a few things, that don't go along with the SCD or the Vitamin E enema diet. 

I feel something must be working because I am feeling pretty good, just have the little blood in my stool.  January/February  I looked horrible.  Too thin, and I had the urgency, diarrhea, blood, no energy and mucas.  I have gained back 12 lbs and this was before I started on the 3 Asacol a day. 

I haven't had a chance to call my doctor, but I will.  I know we had discussed getting another colonsocopy and I will be going back to the second GI doctor to have that done. 

Thanks for all your opinions.  I really wish there was some other way to fight this disease with out the prescription meds. 

Snookiebow

 

Since you've been off starches and flour for so long, I wouldn't recommend adding it to your diet out of nowhere when you've clearly improved by not eating them. That includes resistant starches.

I would suggest stopping the peanut butter and trying walnut butter as mentioned above. Stick to your diet though, it's obviously helping, just tweak it a bit more.

Also if you REALLY want to see if you have anything going on in your gut you should do a parasite testing. It's only $125 total for the whole thing. You need to do it from a good lab though, because most labs don't know how to test properly. They can find anything from worms, bacteria and yeast build up (the bad kind). I did mine from http://www.parasitetesting.com/ however there is also http://www.gsdl.com/

It could reveal something you're missing. Don't rely on your doctors local labratory. Those labs above will fax him the lab results.

SnookieBow said...
I just don't feel the prescription medications actually heal the ulcers. I think they just mask the symptoms because when you stop taking them symptoms start again. I want something that heals the sores.

I wouldn't say they mask symptoms... more that they reduce inflammation and irritation which is a roundabout way of healing or at least preventing ulceration. Web MD says this:

"Mesalamine is an aminosalicylate anti-inflammatory drug. It is believed to work by blocking the production of certain natural chemicals that may cause pain and swelling."

Basically, it has the same anti-inflammatory effect of the omega-3 fish oil supplements you're taking.

I'm wondering if a dose of something like diflucan or nystatin might get you there...(remission). I see you are taking natural antifungals, but some peeple need a prescription antifungal to get rid of all the symptoms, if they do have a fungal condition. Just a thought. I would definitely continue staying away from grains and sugar, at least for now. Just my opinion..

Kim

I mean off all UC based medications. Supplements aren't medications.

I would read my first post though, about the parasite testing.

I am drinking the Natures Request Aloe Vera Juice.  I get it at Sam's Club.  $6.00 a gallon.  It is actually another division of Lily of the the Desert.  All the aloin and aloe emodin are removed.  At the Whole Food Market I bought the Lily of the Desert Aloe Vera Gel and it has the the Carrageenan in it. 

I will continue to take the supplements as I am doing.  Something is working.  I am going to research Horus' comments on the diet before I change anything.  I dearly love Maranatha Creamy peanut butter and raw honey.  I feel that is what has helped me to put the weight back on. 

 I will check into the parasite testing.  I had a stool sample done in March and they didn't find anything unusual.  Said I had a lot of good bacteria.  At the time I was worried about the smell.  It smelled like dead.   Is that smell typical while in a flare? 

I looked up the resitant starches so I know what you are talking about and no I don't think I want to include them yet. 

Thanks for your information and advice.

Darlene

 

Denise

Thanks for your reply.  It is hard to do the enema at night, because my bm is in my colon and I can't pass it  at night. 

My routine is shower in the morning and then my gut wakes up and then I can go.  My bm's are formed.  No diarrhea. I have to leave the house by 7 a.m. so it is impossible to do an enema in the morning.    

I called my doctor and he suggested upping the Asacol to 2pills 3times a day.  I really don't want to, but may try and see if it helps.   

A question for you, if you have active UC do you automatically have to have a c-section when pregnant? I probably shouldn't get pregnant again, but the thought is there. 

Darlene  

 

Wait wait wait....You don't have time to DO the enema, or you don't have time to lay down after the enema? It takes me like 5 minutes to DO the enema (cutting open the pills to cleaning up so it never happened), so that's why I ask. I take them twice a day now since I'm sick and I still reap the benefits when I don't lay down (which is almost never during the day ones). All that seems to matter is that it's in there.

I've never had mine run out of me. I was afraid at first, but it's never happened and I've been doing it on and off for 2 years almost. I try and do mine at night so I can lay down, but like I said, it still helps (maybe as much, maybe not) if you just have it in there.
I have no idea how a compounding pharmacy would make it. Never thought of having someone else do it. I use a rowasa enema bottle (a child or infant enema bottle will work too) that I washed out. I get the NOW brand of 1000iu Vit E with the -ol not -yl (natural, not synthetic). I cut the end of the pills with some scissors and empty them into the rowasa bottle. I use about 20 of them just to try and get it as far in as possible. They aren't THAT cheap, so I also don't want to waste them. I just wash the end of the bottle in super hot water and soap(not the inside) and reuse it. I have the bottle of vit e, the scissors, and a tiny little vasaline thing all in a plastic bag and in the cabinet. I set the bottle somewhere else b/c it leaks on it's side (and vit e doesn't come off of anything). Takes no time at all now, and it's all there together. I used a tablespoon of boiled water with it in the first week or so, but stopped that b/c it was too time consuming and seemed pointless to me.
I've come to the conclusion over the past almost 3 years that if something is going to work, it's going to do it within 2-3 days. All this crap about mesalamine taking 6w to see any difference is crap. I've taken it twice and been better within 24 hours (the thrid time it did nothing). Same with the vit e, same with the licorice (shouldn't take that if you're trying to get pg though). Everything I've ever used has shown an improvement quickly. I don't buy into all this taking pills forever when they aren't working.
Sorry, side frustration rant. Anyway, I'd try it a week and see if you've improved. I think you said up there somewhere that you were better when you did it, so I'd just give it a try in the morning.
I wouldn't want to get up an hour earlier either. I'd try not laying down first. :P