Ulcerative Colitis in Remission

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 have 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 and 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. 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 mg per day and then it was eventually increased to 2mg.
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"-1" 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.

Post Edited (colgone1) : 6/15/2011 8:49:00 AM (GMT-6)

It's the Naltrexone that helped you... and I'm very glad for you.

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.

I am not sure as I didn't ask my normal doctor to prescribe it although I am sure he would. I was getting a prescription already. My normal Dr. was happy I was getting relief and is open to what works.

The homeopath I go to is Dr. Samuel Benjamin MD. He is also a homeopath. His practice is in Scottsdale, AZ. He also offers acupuncture, which is another science I would not dismiss. I have never tried it but given the nature of electronics and our bodies with electrons etc. I see no reason why the correct "voltage" nerve firing would not offer some intriguing possibilities for certain conditions.

The LDN has not had any noticeable side effects for me.

Look at the post on this site for fecal implants under the Ulcerative Colitis Forum

Fecal / Stool Transplant, Human Probiotic Infusion, Enema of Crapola...possible cure for UC!

I am now more convinced than ever that this is biology. This sounds very encouraging.

Colgone1, thank you for sharing your story and I want to try LDN as soon as I can get a prescription for it.

Is there anything I should be informed about? I'm in the hospital writing this and wondering if i need to contact a special pharmacy about this medication. Or get LDN as Transdermal if my flare is bad enough.

FYI study shows that naltrexone reduces inflammation.  Check the out the article below

http://www.medicalnewstoday.com/releases/225995.php

collegeman,

https://www.healingwell.com/community/default.aspx?f=38&m=2079694

I was diagnosed with UC and was bleeding pretty badly for close to 1 year, tried various regular meds which didn't work, they wanted me to take Remicade and I refused. Then I got the remicade or colon removal talk, and I said NO. I did lots of research and found LDN. It saved my colon, and in the process I started getting my life back.

Please do your research on it. To me, it should be the drug of first choice, rather than last resort, because it has almost no side effects, is cheap. But don't be fooled: most doctors will NOT prescribe it for you. You'll probably need to go to an alternative doc to get it prescribed. If you do decide to go for it, make sure you get the Transdermal LDN prescribed.

Regarding: Do you think I could start taking LDN even though I'm on high dose prednisone? And Why are you on only protein based diet?
I was on high protein diet before like SCD but I really need carbs in my diet.
Any advice on that?

How high a dose of prednisone are you on? It's usually suggested that when you start on LDN, you are tapering down on prednisone (since it is an immuno-suppressant). If you can get yourself to a 20mg dosage, you can start with the LDN, and then taper to the 10mg and stay on that until you feel the LDN has kicked in and started helping you. Once LDN starts working, lots of us are able to reduce our meds quite a bit and go totallly med free or on a maintenance meds schedule only.

I understand your need for carbs. However many on this forum will tell you that the SCD diet helps a great deal - even for those who are not on LDN. SCD is pretty clean of carbs, sugars, wheat, dairy. You could do salad and non-starchy veggies. But that's only at the start of it all. And it enables your gut/colon to heal enough from the inflammation so that the LDN can help heal and repair it. I guess you could call it a piggy-back effect.

Once the healing has taken place, you can start experimenting back with foods, one at a time to see which will affect you and how.
Also, LDN has been shown experiencially to help with many food intolerances after 6 months of use. So foods that were not tolerated at all, are no longer a problem.

The reason I was initially and for many months before discovering LDN on a strictly protein diet, was because if I had anything else (fruits, carbs,dairy, veggies), it made the bleeding much, much worse (and also had close to 10-15 bm uncontrollable D). So I cut everything out, and ate only protein: chicken, lamb, little beef, fish, and at least 2 Mercola whey protein shakes with almond milk. Even with this diet, prior to LDN, I was bleeding at a 10, but the bm were controlled at 4 a day. After 4 days on Transdermal LDN, the bleeding went down to a 3, and then a few days later to a 1. Now I have normal shaped bm - about 2 a day.

Eventually, you will be able to re-introduce the carbs, and you'll be fine.

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.

Started on 1mg LDN per night. After 1 month it was increased to 2mg per night.
The first month of taking LDN I was weaning off of the Prednisone.

I was also taking Asacol at the time 2400mg per day.

1 month after the bleeding and urgency stopped I stopped taking Asacol. Prior to that I was on Lialda and enemas but saw no improvement with that and went back to the Asacol which I had previously been on. My very first week of taking Asacol in the hospital my bleeding had subsided. I was also getting intravenous fluids administered. As soon as I left the hospital it was a gradual downhill slide until the Asacol was not doing anything, this was within days. Eventually being put on the prednisone.

I had originally before any medication gone into the hospital because of a serious fever and getting diagnosed with diabetes. My blood sugar was at 600. They put me on a major restricted (broth) diet. This probably in retrospect was the real reason for the bleeding and urgency initially subsiding. I had no food in me.

Prior to this I had ignored the bleeding for 4 months and was unable to get to a Dr. to schedule a colonoscopy until after the New Year (everyone using their insurance by the end of the year scheduling issues I was told). The first week of the New Year is when I ended up in the hospital (2010) 6 months after this had initially started. By the time I decided to seek out a doctor I was going 20+ times per day.

The only true relief I had prior to LDN was when I didn't eat and that is not good for diabetes.

If you start the LDN just be patient it took almost 6 weeks to kick in and it was like a light switch going off. I hope this long wind of mine is coherent enough for you.

I pray you find the correct path and start feeling better.

CS,

My diet is getting back to more of what my diabetes would dictate. This week I have had:
Breakfast: egg omelet with mozzarella (twice), 1) slice multi-grain bread, 3 slices of turkey bacon, Muesli (twice) (organic cereal, rolled oats, sunflower seeds, sliced almonds, oat bran, wheat germ and cinnamon) and Non fat milk, Oatmeal (once), strawberries and 1) slice multi-grain toast.

Lunch: (Once) Chips/salsa and a 2) chicken tamales, (3 times) Progresso chicken and Wild Rice Soup with 1) multi-grain cracker. (1) Nothing

Dinner: (Once)Hamburger, hamburger bun, pickle, ketchup, broiled potato slices, Greek salad and a slice of carrot cake (low sugar). (once) Left over hamburger and brown rice, (0nce) steak, onions and wild rice, (Once) Chicken and left over wild rice. 6) crackers with Havarti cheese, (Once) 2 chicken tamales, 1) slice carrot cake (low sugar)

I haven't had any salad this week but will tomorrow. I usually eat more fish than meat and usually more cooked vegetables.

When I started eating better after the hospital stay I was making lentil and split pea soup to eat with a few crackers, chicken and romaine /various lettuce salads, chicken and vegetable, fish and vegetable, rare meat and vegetable, cheese omelets. turkey bacon, multi-grain toast, Muesli, Non fat milk, meatless salads with cucumbers, bell peppers, zucchini, broccoli, carrots (minimal high in sugar). Pretty much stopped eating out as that was just difficult as thing s were.

Right around the time I started the LDN I stopped eating fresh veggies, fruit, lettuce etc. I am weaning myself back into these things. Had some pears last week and a couple of salads. Might try some split pea soup this weekend (hesitant some as it seems to be a gassy type food but I want to see what happens).

I have put on about 30lbs. since losing 80 (actually 90). I now need to start losing again but in a good way. Started at 310 down to 220 at my lowest and worst day. I was only this low for about 2 weeks then went back up to 230. I am now at 255 and could really stand to lose 50. I am 6'3" and around 200 would be good. My main focus became the bleeding and urgency. The only relief prior to the LDN was fasting for a day or two, not good for diabetes but I didn't pass anything on those days.

The hardest thing was trying to figure out what works and what doesn't. When doing so many different things it was difficult at best. I really felt for me that not eating the salads and fresh veggies in conjunction with the LDN was helpful. I do not buy into the stress thing and think this a bacterial or some other type of germ. Cleaning the place out and rebuilding it has always sounded like a more logical path to me.

The fecal implant posts and successes are very intriguing to me.

Be diligent and get better. I am rooting for you.

Post Edited (colgone1) : 6/3/2011 3:20:28 PM (GMT-6)

Thanks, Colgone1! Hope it goes well.

InSoFla, I know :] that you're only trying to help. I really appreciate it.

I don't have any thyroid issues but I just want to move up gradually. Maybe 1mg every week?