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06-02-2011, 08:06 PM   #1
colgone1
 
Join Date: Jun 2011
Location: Arizona
Ulcerative Colitis Cured

I had posted this on another site and thought I would share this here. This is one nasty disease that has a lot of suffering associated with it. I hope this helps someone. I curt into this post answers to questions on the other post. As of this moment I have not had to go at all yet today but I have not eaten that much either. LDN has worked for me. Also look at transdermal LDN links.

5/2/11

I have been waiting to post this and now feel comfortable to share my experience.
Almost 2 years ago, just turned 60, I started passing blood. I remember this day. The night of my last solid poop was odd. I was a solid with nothing to wipe poop. I was thinking how odd this was but accepted it as cool.
The next day I passed blood and diarrhea as loose as any I had ever had. At first I thought it was food poisoning as I have been known to eat some spoiled food from time to time. I still think that this could have been the start of this process. I had also been in the habit of eating spicy foods, the hotter the better. I now believe that pickled jalapenos, not the fresh but the typical ones in a jar or can, substantially contributed to this condition. I would eat them with just about everything, all the while joking that I was going to eat spicy until I could no more. Some joke.
The bleeding continued for 5 months before I called a gastroenterologist. Denial yes, I am a guy and not very bright sometimes. I was scheduled for an appointment 1 month out. I will not go into my rant about doctors at this time but, buyers beware.
During this time Christmas came. I was at church the weekend of Christmas feeling crummy. I went home and slept for 23 hours. I then woke up with a 103° fever. Got up to 105° twice during the week for short periods of time, remember I am not too smart. My normal doctor, over the phone, and my wife tried to convince me to go to the hospital. Me tough, me smart...me very dumb. My fever finally broke the end of the week. I was still feeling crappy, no pun intended but still flowing blood and decided to break down and go to my normal doctor.
I was tested and found to have a blood sugar of 600+. They checked me into the hospital. For those not hip to diabetes this is very high blood sugar. They immediately read me the riot act. I had and have taken this to heart changed my diet and lost over 80 lbs. I was at 310 and went down to 230.....back to this in a moment.
While in the hospital they gave me the choice of having a colonoscopy done there or I could wait and have it done as an outpatient. This was asked of me by a doctor. I am not very bright but let's see; I am in the hospital, blood with every trip to the bathroom, very little control, like none, let me see "do I wait?" I ask myself. Of course let's do this now as I am here, duh. Let me say I could go on for many more words with the poor performance of the doctors I ran across on this journey, except for my personal physician.
Colonoscopy gets done. I was told they were using the Michael Jackson drug, propofol. Wow, no wonder he had no problem sleeping.
Verdict is in Ulcerative Colitis, nasty, nasty disease. They immediately put me on Asacol. I got some noticeable relief but still the diarrhea. The bleeding subsided to mild bleeding for a few days.
The next 8 months I lost a lot of weight. My diet was helping but the UC was kicking my butt, again NPI (no pun intended). Within a month I had gotten off all the diabetes medicine and have since controlled it with diet.
I looked at and continue to look at this as a gift from God. I had said for years that I was going to eat better and exercise. Well God was just there putting His arm around me to help encourage me to do this. I could have gone on unaware of the diabetes and had it totally destroy my body, thus in my mind I was blessed with this knowledge.
The UC continued to get worse. One of the first things they were hitting me with at the hospital is "are you stressed?" I told them I did not think so. I have pressure at work but do not take it home with me, thus in my mind just normal stuff. The medical world likes to guess at things they do not understand and the mind is the ever nebulous place to go for the unexplained. Remember when allergies were all "in the head"?
As I continued to get worse, at least 20 trips to the bathroom every day, the drug regime would change. The Asacol did not seem to be helping anymore and I was put on Lialda. I was also given enemas to take every couple of days, essentially a rectal form of Asacol. Whenever the drugs were changed there would be a few days of seemingly better experience, maybe only 12 times to the bathroom. Things deteriorated pretty fast by summer. In September I was put on Prednisone, a very nasty drug. I would go to the office and have to lie down after 1/2 hour and do my work laying down unless of course I was running to the bathroom. I was weak, tired and drained. After a few accidents it didn’t take too much for me to recognize that once I thought or felt about going I better be heading to the bathroom as there was no control, at all period.
I was getting frustrated and evaluating what option was left: Remicade or cutting the colon out. Going only 6 times a day was sounding more and more appealing.
I opted for the Remicade as a last resort. Now remember I am not very bright. Before I go any further let me stress the importance of prayer. I never once blamed God for this or even alluded to asking Him why me? I am a sinner falling far short and deserve no special grace. I did though have many people praying for me.
I decided about one month before doing the Remicade that I would go see a homeopath just to get one more opinion. Praise to the Lord for this insight. A friend at church recommended a Dr. Samuel Benjamin of Scottsdale, AZ. He is homeopath and an MD. He is all about alternative medicine, acupuncture, herbs etc.
He takes me in immediately. I tell him what is going on. He gives me a sheet to read, immediately, and tells me to read it right there because "what I am going to tell you sounds like snake oil". I read this information about a drug called Naltrexone.
Two weeks before this I went to a health food store and bought Aloe Vera juice and started drinking some every day. Prior to this I had started weaning myself off of the Prednisone. A nurse friend told me to take a drug called Sam E that this would help my kidneys or liver adapt to the loss of Prednisone in my diet.
The gastroenterologist that I ended up with was a good man. He was caring, honest and as knowledgeable as the normal medical world allowed. open to trying diets etc. but he was also at a loss as to what my options were. He was straight forward about the options at this point: surgery or Remicade.
You can find information about Naltrexone on line. Dr. Benjamin also got me on probiotics. Someone else had mentioned Kefir so I also started taking that also. I was starting to feel better but what was it that was working. Still bleeding and having urgencies. Dr Benjamin told me it would take about 1 month to see results. Started with 1 mm per day and then it was eventually increased to 2mm.
I had mentioned to a nurse, while waiting for the gastroenterologist, that I had started taking aloe juice and was seeing some positive results. She said that, yes people would see some good results with the aloe but it would get worse again in about 3 weeks. I thought about this and decided to not take these things every day (took them every day for 2 weeks initially). I believed that mixing things up might help my body to not get acclimated to them too quickly. The only things I kept taking daily were the probiotics and the Naltrexone.
The prayer continued. The Wednesday of Thanksgiving week the bleeding stopped!!!! Praise God!!!!!
I had bled continuously for about 1 year and 1/2. Right before this I had also decided to cut out of my diet fresh lettuce, fresh vegetables, SPINACH, etc. I started putting on a little weight but decided the bleeding was more important to stop.
The tough thing was: what was the thing that was working? While I was taking and trying so many things there is a cloud over the whole experience. Number 1 is God. A woman came up to me that I know at church during this time who was familiar with what I had been going through. She told me she was praying specifically for my illness. Gross yes but to the point.
That Friday I was scheduled for the Remicade. Remember me dumb. Since I was scheduled for it I went ahead and took the treatment, even though the bleeding had stopped. I had gone to the same place where chemo is given. I sat right next to a gal who was taking a chemo treatment. Probably should have not done the treatment. After this I decided to not take any more, why should I as I was getting better. I also found out that once you started these treatments they had to be continued at $4,000 a pop. This treatment also lowers the immunity system making one susceptible to other diseases.
After Christmas I stopped taking the Asacol. I had previously switched back as I thought it more effective than the Lialda. I had previously stopped the enemas in October as they did not seem to be helping at all, except the first few days originally. By the end of January I started backing off of the probiotics kefir and aloe.
I am now taking only the Naltrexone every night. Probiotics a couple of times a week. Aloe twice a week, only about 2 shot glasses worth. I have put on about 30 lbs. and will be trying salads again in another week....and of course continuing in prayer.
I only have to go once or twice a day now, what would have been “normal” for me before all of this started.
My stools started getting snaky in December, loose but snaky. They have gotten progressively thicker from pinkie thick to thumb and 1/2 thick as of today. I had bleeding one time over 1 month ago, right after I had eaten some spinach. I was not sure whether it was the spinach or hemorrhoids. I am hoping it was the hemorrhoids as I am going to delve into the salad thing again.
Anyway I thought it was time to share all of this as when I first got diagnosed with Ulcerative Colitis I got on some web sites to see what peoples' experiences were and am now returning the sharing.
I hope this has helped. Sorry for the long wind but I think the whole experience is necessary. If you have this condition I pray that you will find relief. If you do not get physical relief then have comfort in the fact that we have a Savior. He is the only one ever to die for or sins. No other is like Him in all of history, and there is undeniable history of His existence. God allows us to be here because He loves us and is giving us each one more day to draw close to Him. Know that life is short and eternity is long. Struggles help to build our character and strengthen us. I know this may sound odd and trite to some but if you do not understand then seek a pastor, priest or minister for some help. There is always peace in the Lord, a peace that we cannot find by ourselves. Everything we have is a gift from God. Good things happen to bad people and bad things happen to good people and vice versa. If we keep our eyes on the goal then our struggles will seem smaller.

PS: As a footnote I had stopped eating other foods along the way: peanuts, popcorn, salsa, spicy foods, and dairy. I have now eaten peanuts, popcorn and some salsa (mild) all with no problems. Dairy gives me gas plus for the diet it is not so good so I am still doing very little of it.


5/12/11

Anyway I feel cured. It has been a complete 180°. My stools are getting thicker now by the days. I have never had much pain thus none now. I am going once maybe twice a day, same as before all of this started and without any urgency. I am more convinced than ever of this being brought on by spoiled food and pickled jalapenos. Other than what the the diabetes dictates I am eating, starting to eat, more fresh food again. The last few days I have had some apples, pears, lettuce. I still haven't ventured into cucumbers and other fresh vegetables but I will and have also been eating for the last 2 weeks mild salsa. Continue to take the LDN. I am feeling like the Ulcerative Colitis is gone. From continually bleeding, literally buckets of blood, 20 plus times a day for over 1 and 1/2 years to where I am now is incredible. Praise the Lord. I will continue to post back in as my diet grows back to the fresh foods.

5/16/11

It is oral 2mg per night and like I stated every 2-3 days a shot of Aloe Vera juice (maybe 2 as I just take a swig out of the bottle. I'm a guy and the only one drinking it). Also a pill form of a health food store pro-biotic every couple of days and a swig of strawberry kefir every 2-3 days.

Today I actually drank two cups of coffee which are outside my normal diet along with some fried chicken that is also in my no zone. As I have gotten better I am hesitant to change too much of what my habits have become.

I do not drink any fruit juice (diabetic), soda or much else except water. I will have the occasional ice tea (once or twice per month) and the last two weeks I have had 2 beers. I am not trying to wean to the beer I was just in a situation where it was appropriate. Had a shot of tequila a few weeks ago.

My gut, npi, feeling is that my body needs to reset the bacteria in my system. I had read somewhere about success with fecal implants at one time. My Doctor said there was no evidence of this with UC. At the time I found this used with people who had successful treatment for c difficile......I just did a search on line and found some people who have been treated for UC with this procedure.

Prior to this disease I had food poisoning a number of times and ate like an idiot on steroids, thus swelling to 310. At first the doctors were trying to say that stress could and probably was a factor. Funny when ever medicine can not explain something it must be in the mind. I deal with stress in my normal day but it is not harbored. I very rarely even think about work after getting home and I do not stress on anything there. Upon telling the Dr.s this I was told that it still might be effecting me. Maybe but my instinct is it is in the gut. My dad had been diagnosed with a bleeding ulcer for 20 years until a new doctor he had gone to see thought it was some kind of bacteria and wham over and back to normal within a month.

I forget where I found them but there are some pictures on line of a colon pre-LDN treatment and post. Pretty compelling. Also given the cost of $26 per month I am blessed.

Here is a link I had found helpful

low dose naltrexone org

I was on Prednisone when I started the LDN. Started at 10mg, went up to 20mg and weaned off over a 3 week period. I used the supplement Sam-E while doing this. No noticeable reaction. The Dr. who prescribed the LDN knew I was on Prednisone and did not have a problem with this.
06-03-2011, 03:20 PM   #2
gypsigirl28
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thanks for your post, I am glad that you were able to find relief and go into remission with your UC.
hopefully others with UC that read this get good information, of course knowing that every person is different and reacts differently.

Agian Im glad you are doing so good
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06-03-2011, 05:24 PM   #3
vonfunk
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I'm glad you're in remission, but please don't use the word "cured".
There are a lot of people claiming to cure IBD. And half of the ones out there are just after money. There have been issues in the past on this board.
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06-03-2011, 09:00 PM   #4
colgone1
 
Join Date: Jun 2011
Location: Arizona
Thank you Rosemary. I do absolutely no social networking but felt compelled to post my experience, especially since it is a good story.

Sorry Vonfunk for using the word "cured". I posted this on another forum using the word remission and thought it might reach more people if I used the word "cured". I know people do searches on line and thought this would help. Never thought for a moment about scamming anyone. I hope your surgery goes smoothly and gives you the results you desire.

I didn't find any of these sites until after going through my experience. I should have looked sooner as my ordeal may have been shortened.

If we can change the word "cured" to "remission" that's fine by me. I am just trying to help someone. I truly appreciate all of the people who have gone out of their way on the net to share experiences. I was just reading on another site about the success of two parents giving their 10 year old fecal implants. Wow.

There is a lot of anguish and fortunately loving people to encourage us.
06-04-2011, 12:06 PM   #5
vonfunk
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No worries colgone, the use of the word "cured" is a touchy thing. I didn't think you had ulterior motives. It was really an FYI, I know that you meant no harm by it.
08-06-2011, 04:17 PM   #6
juliemh77
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The only cure for ulcerative colitis is to have your entire large intestine removed which is what i had to have done and having a jpouch created out of the small intestine. Drugs dont cure the colitis, it just takes away the symptoms!
08-22-2011, 08:12 PM   #7
Michealleo
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Join Date: Aug 2011
HI guys here i can just only onething that Living with colitis no fun . Doctors are failed , researchers are failed even i am also faild to find a cure for this hell . we really not deserve it . If these all peoples have a cure then why we r still in pain ?
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07-30-2012, 07:10 AM   #8
Missus_Em
 
Join Date: Jul 2012
Hi Colgone1, I can definitely relate to your story. I too have been losing a lot of blood daily for over 3 years. I met with countless gps, gastroenterologists, had numerous colonoscopies and tried so many different meds til i was diagnosed with UC.
It wasn't until I met with a doctor specialising in integrative medicine who really understood what I was going thru. She recently put me onto LDN & also probiotics. I've noticed that I'm bleeding a lot less & diarrhoea is rare now. However bleeding is still daily. How long did you take LDN before bleeding stopped??
I will try the Aloe shots I haven't heard of that.
08-07-2012, 07:15 PM   #9
mf15
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Join Date: Jun 2012
Location: Pennsylvania
There are a few more things you can try to reduce bleeding,no nightshade diet for a month to see if if helps. Also very important,reduce linoleic acid in the diet,
cut most veggie oils except for olive and coconut,also take epa/dha fish oil.
The idea is to try and get the balance of omega 6/3 ratio back in balance,also if you eat meat then grass fed,if you drink milk then grass fed,also grass fed butter and cheese.
Or you can go off of all dairy,and or grains,some of these things work for some people.
Old Mike
08-07-2012, 11:38 PM   #10
Missus_Em
 
Join Date: Jul 2012
Thanks Mike, I really really appreciate your advice.
I'm willing to try anything right now, it's affected my work/social life for years..
Will give it a go :-)
12-03-2012, 11:22 AM   #11
colgone1
 
Join Date: Jun 2011
Location: Arizona
Missus_Em, Sorry I did not see your question until now.

It took 6 weeks for the LDN to kick in. I went back to the doctor who had prescribed the LDN originally end of July 2012. He was closing his practice and going to work for a corporation because of the difficulty of practicing medicine and making a profit. I went to see him only to wish him well. I told him I had stopped taking LDN after going into remission. He told me to go back on it and to take it the rest of my life and wrote me a prescription. He said there was no down side to taking it. So I went back on LDN.

I continue to eat a low sugar diet and occasional pro-biotic. I have reintroduced salads, cucumbers and salsa. I remain symptom free. I will get some grumblings in my intestine if I eat too much fresh vegetables, however this is getting less and less.

How are you doing? Did you try the LDN?
12-03-2012, 04:13 PM   #12
Missus_Em
 
Join Date: Jul 2012
Hi Colgone1

I have some great news.

I didn't get the results i wanted with LDN so I tried another type of med from my integrative medicine doctor. It's called "Predsol Retention Enema" (100ml) and I have seen dramatic results. . I feel 100% symptom free after 3 & 1/2 half years of DAILY symptoms.
I actually tried this drug earlier in year but my body rejected it so I only took it a couple times a week then gave up. However, I decided to give it 'another go' But this time I made sure I took it EVERY SINGLE DAY for a month. Then, I gave my body a break for a week (symptoms returned slightly). I went back on Predsol Retention Enema for another month, then gave my body a break again for a week. I've been doing this for several months and after each month my symptoms lessened. Right now, I have been off this med for a few weeks and still zero symptoms have returned. I am still going to take this med but give myself bigger 'breaks' in between.

In addition to this, I have been taking Omega 3 fish oil & probiotics every day.
I also stopped coffee COMPLETELY recently and believe this has helped as it was causing loose BMs and bloating. Even if I drink it once in the week, I feel sick from it so I have cut it out of my diet (though I must admit it was difficult)

In case anyone thinks I only had a mild case of ulcerative colitis, I have been through a lot over the past few years, & before that I had a bad case of IBS throughout my teens & adulthood.
My UC symptoms consisted of DAILY & severe bleeding, very loose BMs, nausea, mucus, extreme tiredness, bloating and stomach cramps.
I was going to toilet more than 7 times a day and usually just to let blood out (A LOT). Sometimes I wouldn't even make it to toilet. :-((
I was an emotional wreck because of this because I was too embarrassed to go to work where my symptoms would 'take over'. Not to mention my love life suffered as I couldn't hide my symptoms. .

No one should have to live like this. I was in my own prison as you don't ever want to tell your colleagues/friends what's REALLY wrong with you (& trust me, they don't want to know the gory details).
That's why these forums are great.

If I can help one person then I'm happy. I'm 'symptom free' and even having normal BMs now. If you have UC, please try taking consistent daily doses of "Predsol Retention Enema 100ml" plus take a probiotic, and stop coffee too. You won't regret it.

Thank you to Colgone1 for starting this Thread. It's really been a great support reading similar stories
12-03-2012, 05:01 PM   #13
colgone1
 
Join Date: Jun 2011
Location: Arizona
I am so glad to hear that you have remission. It really is a struggle to live with as it effects every facet of life. The only way I could ever go anywhere was to literally not eat anything for hours before I would leave and not again until my return.

There really is no one fix and I am thankful you found a path. May it continue on and on. How long did you try the LDN?
12-03-2012, 06:47 PM   #14
Missus_Em
 
Join Date: Jul 2012
Thank you - I am keeping fingers crossed as I feel as though I have tried everything & Predsol Retention Enema was my saviour. I was previously taking LDN for around 3months but mainly stopped because I wanted to try something different & didn't want to mix meds (this was so I could see which one was better for me).
I know that everyone is different so I guess what worked for me may not work for everyone, but I sure hope that someone else similar to me finds relief in Predsol Retention Enemas too.

I really hope I can stay symptom free while I'm taking this.
As soon as or if symptoms return I will post an update (but I hope this doesn't happen for a long time at least).

Take care,
Missus_Em
12-03-2012, 08:37 PM   #15
colgone1
 
Join Date: Jun 2011
Location: Arizona
I have and will pray that your posts and reports are only positive.
07-26-2015, 05:30 AM   #16
Tomboy_katUC
 
Join Date: Jul 2015
I'm glad you're in remission, but please don't use the word "cured".
There are a lot of people claiming to cure IBD. And half of the ones out there are just after money. There have been issues in the past on this board.
Exactly. There is no cure for UC or Crohn's yet.

Congratulations! I hope you have a great rest of your life in remission!
08-01-2015, 04:58 PM   #17
SmellyMelly
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There is no cure for UC or Crohn's yet.
Yet loads of people on the SCD and GAPs diet forums saying they are 100% fully cured.

http://www.breakingtheviciouscycle.info/

http://www.gaps.me/

And it seems like they may actually be, since upon colonoscopy investigation by their doctors, no trace of IBD inflammation can be now found. But the problem is, they then all say their doctors refuse to acknowledge this. So the information never get shared within the medical community.

I am assuming that if no trace can be found - you are effectively cured?!

From what I have read so far the diet seems to be very helpful to manage the disease. But some people are actually reporting a complete cure.

remission is probably a better word on these types of forums eh!
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