Do you believe in miracles?

I will keep this short. In September 2010, after suffering for many years with this disease, I was admitted to Beth Israel Hospital in Boston, Ma. I had been bleeding for many months prior and pretty much relegated myself to the fact that I was probably going to lose my colon. I had tried everything Asacol, Humira, Remicade, Prednisone and nothing helped me. At the time I was a patient of Mass. General Hospital and my doctor told me it was time to discuss surgery. It looked pretty grim.

In desperation I came to this forum looking for help and a caring member advised me to go to BIDMC. Reluctantly I did and am so grateful that I did! These people were totally on the ball here. Everything I had researched online they knew about. They knew about the link between ex smokers and UC. They new what VSL was. Everything. When I was a patient at MGH, they knew little about alternative methods and didn't encourage thinking outside the box.

When they admitted me they started with two antibiotics and an intravenous diet. Within two days the bleeding stopped and I began to feel better. On day five they gave me a colonoscopy and guess what? There was NO sign of disease at all? No bleeding and most of the open sores were scabbing over and healing. I was released on day seven and saw a Doctor a few days later at BIDMC. He told me to take a multi vitamin, 2 fish oil, 2 vitamin D daily along with a 50 billion strain probiotic from Renewlife, daily! I did and haven't looked back since! Since September 10, 2010 I have been disease free. I can't even begin to describe the joy and gratitude that I feel on a daily basis. If it weren't for this forum and the advice of a caring person, I'd be living with a j-pouch now.

I wanted to write this post sooner but I wanted to make sure I was in remission. Of course now I'm thinking about getting back to work now, but after being on SSI for so long, I'm worried. Who wants to hire a 50 year old man with a 8 year gap in his employment history?

Anyway, I wish the best to everyone on this forum and hope a miracle awaits you too! Thank You, Thank You, Thank You!

Thank you again my friend (You know who you are)! I am indebted to you forever!

PLEASE ignore my sig. I haven't yet updated it. Needles to say I'm not on ANY of the meds listed here anymore!

Conquer UC said...
Wow this is such a feel good story im so happy for you Festeris :)
i, too, have heard of someone else on this forum who has achieved remission after being on an intravenous diet i.e, nill by mouth; TPN only (which is what im assuming they had you on as well) and also acheived remission after 5-7 days like that.
Can i ask you which two antobiotics did they put you on? and for how long? Did you have c diff along with the UC?
I remember when i first started getting the relentless diarrhoea after birth i first thought this must be an infection and started on flagyl and keflex (high doses) and even after 3 days there was no improvement so i stopped them. I was only taking fluids not eating hard foods. But still had to go to hospital.

Also, What brand fish oil(s) do you use?

I pray that your remission is lifelong...

Conquer

Thanks you so much!

As far as antibiotics go, Flagyl was one but I don't remember the other and they were very high doses too. As far as I know, NO C diff either. Fish oil and vitamins are from BJ"s.

stereofidelic89 said...
Congrats! But on day 5 they found no disease? How is that possible?

To rephrase: did they find signs of irritation? or anything?

I do believe in miracles, or I would be where I am today.

That's just it, I don't know how that is possible. And neither does the staff at BIDMC. All I know is I'm not sick anymore and maybe this dreaded disease is caused by some virus or something? I really don't know. All I know is one minute I'm going to lose my colon and the next I'm living proof and am as good as new. I'm sure what worked for me won't work for everyone. We are all unique in our diagnosis and disease.

On a side note my doctor thinks it is an autoimmune thing and in all fairness I still suffer from brutal arthritis. Somehow I guess it's all related. I can live with it though as long as I don't have to deal with the UC!

Also as far as irritations etc. There is scarring there but no open sores or bleeding of any kind.

I now several people who've been put into remission with very high dose abx, flagyl being one of them. It's odd that they gave you flagyl by IV for UC since it bypasses the gut that way?
Anyway, thanks for sharing your story and I hope you continue to do very well.

killcolitis said...
I now several people who've been put into remission with very high dose abx, flagyl being one of them. It's odd that they gave you flagyl by IV for UC since it bypasses the gut that way?
Anyway, thanks for sharing your story and I hope you continue to do very well.

Yes, I agree. Very odd indeed. Thank you for your kind words...

quincy said...
Were you tested for bacterial infection via stool samples?

q

Yes I was and they all came back negative. I know how weird this seems. I don't know if I'm "cured" or not, but my doctor calls it remission, and I'm ok with that. I'm just shocked that for over 19 months now I've experienced no pain, no mucous and NO blood!

I ask a lot of questions and I read a ton on this disease and asked my doctor if it were possible that MGH misdiagnosed me? They said not a chance. People with IBS do NOT bleed or have visible damage on a colonoscopy.

Also of note: I do have IBS as well as IBD and I live a simple life on a simple diet. I can't eat nuts or fresh anything still. If I do, I begin to feel stirrings below. The same with dairy and alcohol. Although not religious, I pray often and meditate the best I can. I also work out for an hour a day, (Still trying to lose the excess belly fat that prednisone left me with) and keep my anxiety levels in check. I believe stress has something to do with this disease and I don't want to reawaken it.

I know everybody is different and I don't want to give false hope to anyone. Truthfully, my docs are still scratching their heads? My sincerest wish is that everyone here find the special diet, concoction of meds or natural blends. This disease robbed me for a long, long time.

Like I said above, I hate to be an ingrate but I am getting anxious about going back to work. I used to be a plant manager and really can't go back to that line of work, which means I'm giving up a pretty good income. So at 50 I am going to have to start at the bottom, again, likely with minimum wage to boot. SSI will give me 9 months of benefits while I work before they set me free. The good thing is Medicaid goes on for a few years just in case of relapse.

But I digress. If I can be of any help, in any way, just ask me. I'm not sure if I'd be any help as my situation is kinda odd and probably unique. I wonder if there is anyone else on this board who's had similar results.

Thanks to this board and all the wonderful members in it!

trojen said...
Guys, the stool tests that are run today....standard, ova and parasite, etc., only look for a minority of our gut flora. This is because they only know a minority of its contents. That said, there is NOT a perfect abx for UC yet, because of the unknown....so we take these strong broad spectrum meds and hope for the best. This is why the FT theory seems to be the most plausible approach to abx/pbx UC therapy. IMO, if you have an underlying infection, damaged gut flora, autoimmune, etc., a specific form of ABX/PBX therapy should help given the nature of the disease. You'll either eradicate the infection, balance the gut flora, or "reset" the immune system (or maybe all of them?). Once this is achieved, your body can do its job and begin to heal itself.

Congrats to you on your remission....cure?

There's a lot of truth to this! My original diagnosis was UC with spondylosis overtones and thought to be an autoimmune disorder. I believe that once my flora was thoroughly cleared out, of good, and bad bacteria, the colon began to heal and has maintained daily through probiotics, diet and vitamins.

It just still amazes me how MGH wouldn't even consider alternative therapies. I guess they're just making too much $$ from meds and such. I wrote my old doctor there recently and told him about my new found success. From the tone of his response it seems he thinks it more of an act of God, than alternative therapy?

Congratulations!!

It's unfortunate that high dose abx are considered and "alternative therapy". Our Gi is a big believer in abx to treat UC but the problem is that they don't have a clue yet as to what's happening in the gut so they can't figure out what to use at which dose. So, if you happen to get one that works for you, then great. If not, that doesn't mean that there isn't one that wouldn't work but that they don't know which one it is or possibly that it hasn't been developed yet.
They do use abx to treat various forms of arthritis too, but again I don't know if this is a standard treatment.

imagardener2 said...
festeris

thanks for returning and telling your story. If it helps one person it is a good deed or perhaps a medical professional might read this and consider using this therapy or one UC'er will go to your hospital instead of another and get better treatment for their disease. This is the real power of the internet--to share information.

May you continue in your good health the rest of your life.

Thank you everyone! May you all find your happiness and peace through remission...