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Ciao, my story of UC and remission

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Ulcerative Colitis
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Posted 2/1/2017 1:32 PM (GMT 0)
Dear All,

my name is luca from Italy and I would like to share my story.This is the first time I write on a forum about this.


I am an engineer and in May 2011 I have been in Michigan for one month for some job assignement. Just to anticipate something, I have eaten a lot of junk food in US.When I have returned home, I have been developed diarrhea and blood. I have been analysed and It was declared as internal emorroids, nevertheless I wa snever convinced especially because the diarrhea lasted 20 days. I put emorroid medicaments and the blood disappeared, while the diarrhea disappeared as well with standard pills like imodium and gratrointestinal antibiotic (i do not remember the name).


Then, i had a very stressful Fall/winter timeframe (house change, bad neighbour relationship and so on). you can understand.


In April 2012, just during Easter time, suddenly I started to have blood and watery red stools up to 30 times day. I was in real life danger. I went to the hospital and they did me a colonoscopy the same day. Results: ulcerative pancolitis. This is teh beginning of my dark side of the life.


I have put on Prednisone (40 mg to taper in 2 months - too fast probably) and Mesalamine and flagyl (some days). Results: syntoms free in 2 days. When I say symptoms free, i intend 1 BM per day, no blood, formed/semi formed stools.

After I finished Prednisone I flare up again (less than the first time). Back on prednisone, back to symptoms free in 2 days. Back to flare up after I tapered it again.

I have tried AZAthioprine, but after one week my liver suffered (I cannot tolerate it, I was feeling VERY bad).

Then I changed my GI as the first one was a dog with a degree in medicine.

New GI (one of the best in Italy) put me on mesalamine again and topster enema: 2 weeks every day, then twice week. It was january 2013. As usual I have asked: is there anything I can do with the food? Reply: "no, but please try to avoid coca cola and high sugar content foods. Then if blood increase, please take a course of Flagyl for one week".


UC responded well, but symptoms never cleared up completely and after 1 month symptoms they tried to come back again. In the meanwhile I have heard about SCD and I have started to follow the protocol NOTE: in 3 years i have NEVER NEVER cheated (for an Italian, no pasta, no pizza, no sugar, nothing). So I decided to take a flagyl for one week, plus SCD. During the course, symptoms get worse (bacteria die off? with blood increase). The day after I have stopped everything was clean.


2013 was basically in quite remission after then taking Mesalamine, Topster enema (twice week), SCD. During 2013 I made my colonoscopy and from pancolitis it was just found slight ulcers in the vertical rectum portion (30 cm descending). great improvement.


My GI told me that I can be visit once a year. In 2014 some weeks after my GI visit, my symptoms come back (not strong) but blood came back. I took immediately flagyl for 10 days this time as I felt one week was not sufficient. Then again: SBAM! almost 2,5 years of full remission (as I defined above) in which I still take the medicaments form the doctor (i do not want to drop w/o his consensus) plus FULL SCD.

Doctor was astonished by results. I have mentioned him about this and SCD and he said " you did the right thing". so I thought " what the hell!!! why you did not notice me about this refined carb crap poison???".


Now after 2,5 year gas increase a bit and recently I have found slight traces of blood in the stools (1/10 of a drop and not every day). So I have to wait and see if SCD can keep it again in remission, otherwise I will restart with a course of flagyl and , maybe, i am thinking to home FMT using my son's stools. Let us see.

Just to tell you: in the last 3 years I was not able to tolerate Home made yogurt but I have eaten every day my home made sauerkraut as probiotics. In the last 2 months I did them wrong and I was not able to eat them (I have re-prepared them but it tooks weeks to ferment correctly) so it could be that the slught symptoms are triggered by missing probiotics.

That's it, I hope you can find my story interesting. I firmly trust that Bacteria are triggering UC, and probiotics and FMT are the cure together with antibiotics.

Post Edited (lukenuke) : 2/1/2017 6:53:13 AM (GMT-7)

Posted 2/1/2017 2:29 PM (GMT 0)
Ciao,

I am an Italian-American with a similar experience, Flagyl has knocked out my flares and put me into remission more than once. But I dare not try to depend on it since like many meds, it works until it doesn't. Then I would be in trouble since I am allergic to the milder mesalamine meds and I refuse to escalate onto the “big guns”. So that would mean surgery for me.

My main criticism of the SCD is that its primary benefit, I believe, is that it is an anti-gluten diet, and many people have problems with gluten and dairy. I am sensitive to gluten but there are many foods legal under the SCD, such as cruciferous veggies and shellfish, that I just cannot tolerate. And there are foods considered illegal under the SCD, such as corn, that give me no problems whatsoever.

So I recommend keeping a food diary to keep track of your symptoms. BTW here is my post describing my flares and escape with Flagyl. Check out our signatures for ideas on how we manage our disease. My signature shows that along with diet I depend on supplements such as probiotics to maintain remission. There are many threads here describing FMT.
www.healingwell.com/community/default.aspx?f=38&m=3620745
Posted 2/1/2017 2:37 PM (GMT 0)
I am exactly like you, an I have kept my diary with all foods. I have introduced one food every 5 - 6 days. Everything was done scientifically and meticulously as per my nature. I have never cheated from scd but at the same time I have tested all SCD food I like prior to define them safe. I am still convinced that stress (lowering immune system) together with any bad bacteria got during my 2011 US trip, triggered me the symptoms and worsened by junk food diet.

Probiotics are keys to keep remission and sauerkraut (home made jars) is one of the best one but unfortunately I have underevaluated the effect of the wrong batch (I was fine, so I started to skip to eat them for weeks and weeks as I did not feel in a hurry with them)
Posted 2/12/2017 8:11 AM (GMT 0)
Hello I would update about day 8 on flagyl 3x250 daily

side effects: belly cramps, no other sise effects as seems I can tolerate well

After 2 days my stools were almost formed and blood reduced. very small presence of mucus.

After four days blood came back, now still with blood.

I remember syptoms get worse during flagyl and then cleared up in the past as soon as I finished the cure. I do think is a die off activity of the bacteria.


In addition, i see some clear blood (not shony red) only at the end of the defecation. I mean stools are ok at the beginning then the last small amout has some blood . Seems like bloods are created because of the movement of the stools in the colon.

Iamcurious did you have the same nehavior with flagyl? I will continue until day 10 then I will stop it and i hope to vet again more than 2 years of complete remission

Post Edited (lukenuke) : 2/12/2017 1:14:04 AM (GMT-7)

Posted 2/12/2017 1:43 PM (GMT 0)
It is my understanding that antibiotics can cause bleeding so I never expected it to stop until my course of Flagyl ended. Along with the Flagyl I took assorted probiotics including S Boulardii, it is a probiotic yeast and immune from ABX. I didn't want C Diff or any other bad guys replacing the bacteria that were getting killed by the Flagyl.

For me Flagyl is only for emergencies, I don't want to routinely depend on it. Meds only work until they stop working. I hope to remain in remission as long as possible by watching my diet and taking supplements shown in my signature. You should also continue with the mesalamines since you aren't allergic to them.
Posted 2/12/2017 3:37 PM (GMT 0)
Thank you for sharing your experience! Sounds like another possible correlation between stress and overgrowth of harmful gut bacteria. That's part of my theory for the cause/development of my UC. It makes sense. Deprive your body of beneficial bacteria by consuming consistent amounts of empty calories, deprive your mitochondrial functions and in turn they expel toxic waste into your gut/blood stream. Oxidative stress combined with other factors sounds like a recipe for disaster.
Posted 2/14/2017 7:37 AM (GMT 0)
I have finished the 10 days flagyl yesterday evening. This morning I got formed stool with at the end of defecation a lot of blood.

If I remeber correctly was the same last time like a die off reaction. In the next 2 days I will know if I will get again remission as in the past 2 times.
Posted 2/14/2017 2:22 PM (GMT 0)
Congrats on the formed stool. I hope it is a remission.
Posted 2/19/2017 9:11 AM (GMT 0)
Hello Just an update after my 10 days course of flagyl. I have formed stools, and in the last 5 days just small traces of blood (little drop/stripe). Today I have got some more, but yesterday was a very streeful day.

What is not clear to me is why blood is ONLY at the end of defecation (1 BM per day). it seems like small internal emorroid or the inner lining of the colon that is trying to heal but with the passage of the stools (like abrasive material) starts to bleed.

now anyway I am of probiotics like home made kefir and sauerkraut. After the antibiotic I do not want bad bacteria to repopulate the colon. Any of you with the same experience?

Anyway: I am ready to restart another 10 days flagyl in case of needs as it is clear that bacteria are the root cause.
Posted 5/23/2017 9:28 PM (GMT 0)
Hi lukenuke,

How are you doing? Did Flagyl bring remission also this time?

I have also taken Flagyl and t has always helped me a lot; the problem is that i have taken it already 3 times (10 days each) since last summer, so i am wondering whether its effect is weaker every time I use it; did the same happen to you? What was the shortest period of time that passes betwneen two courses of flagyl, and how many times have you taken it in the past?
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