Haileys letter

I thank you for sharing your story. I could not imagine my baby going through what I've been through in the past 2 years. I agree that it is caused by a bacteria. I'm taking a high dose of probiotics now and am finally seeing some light at the end of the tunnel. This would mean if it is caused by bacteria of some sort then it would make sense that probiotics would help right? I don't take any other medications because I don't want to control my symptoms, I want to heal them.

First, I would like to say that I am so glad that your daughter is now well. A similiar situation happend to me in that I had a cat that developed bloody and runny stools and within less than 6 months I developed UC. I don't have well water and my cat never went outside but somehow I always felt there was a link.

Wow...this is such a powerful letter. My heart is heavy when I hear how much your daughter had to endure at such a young age. My daughter was diagnosed at age 10 and there is nothing worse than watching your child suffer. I am SO happy to hear Hailey is doing so well. Did you ever find out what your dog died of? We have 4 Labradors (Hence the name MustLoveDogs) and I've always wondered if there was any correlation. Thing is, none of my dogs have been ill. I am going to keep the name of this antibiotic handy so that the next time I talk to my daughter's GI I can get his opinion. Thanks for sharing!

I haven't seen this post before. It's very uplifting. Thanks for bumping it.

I believe my son's UC is caused by an unknown infection. Stool tests are not very accurate at all. I was told by a fellow GI doctor when we were in hospital that stool tests are almost 100% accurate. The same day I spoke with a GI and he said most stool tests need to be re-done two ro three times to be reasonably accurate. So even within the medical establishment there is no consistency. At his worse my son's GI prescribed vancomycin and he responded very well to it. His GI happens to believe in treating UC with abx. It made total sense to us that if abx improved his condition then there must be some infection in there. The problem was that my son would recover after IV pred and vanco only to flare again 2 or 3 months later. This happened four times. There was something missing. When we discovered fecal transplant we thought this might be the missing link. After his last round of vanco we started on FT to repopulate his gut flora that had been wiped out by the (likely) infection and the vanco. We have been following a very long protocol for the last 6 months and so far he has been med free for 14 weeks now since he weaned off the pred. We are continuing to wean off the FTs and we hope and pray that when we do finally stop FT that he will remain in remission.

In your story you talk about your family dog having the same symptoms as your daughter. The son of a friend of mine developed Crohns 12 years ago at age 7. He first showed symptoms a week after being bitten right down to the bone by their cat. The same cat developed UC like symptoms soon after and was so bad they had to put it down. My friend to this day still wonders whether their cat had transmitted an infection to his son that was never detected. His Crohns was extremely bad and he almost died because of it.

Thanks again for posting.

Beautiful story, really inspirational!

I haven't read all the replies so someone else might have touched on this but for me, this is more evidence to suggest most UC cases are likely to be MAP-related.

It's just my opinion, not doctrine, but I believe the immune theory is silly. The body does NOT turn on itself in UC or Crohns - the inflammatory response is initiated as part of the normal defence mechanism. Just like the stress response is good for us in the short-term, if stress is prolonged (chronic) then our body produces an overload of toxic chemicals and we become ill.

When the inflammatory response is prolonged, inflammation becomes chronic and results in the degradation of the mucosal lining. With regard to UC & Crohns, ultimately NHS staff working in pathology (quite rightly) will tell you it's merely a question of diagnosis. The genesis of the damage is the same but the depth of the damage alone determines diagnosis: e.g. inflammation severe enough to perforate mucosa is UC, inflammation severe enough the penetrate beyond mucosa is Crohns. Just like 2nd and 3rd degree burns in a sense. Same for location - if it's just in the colon, they say it's UC, if it's in the small bowel, they tell you it's Crohns.

I believe the leading cause of UC is pathogenic. For the record, I don't believe the genesis of inflammation is always triggered by a MAP infection in the gut. I believe it's also possible for this reaction to be triggered by dysbiosis due to poor diet and stress, poor reaction to chemical agents that are harsh on the gut (including antibiotics) and other environmental factors more difficult to quantify (e.g. sustained ingestion of pesticides, GMO's and other things that shouldn't be making their way into our gut in the first place).

Either way, I believe that's way this young girl responded so well to Rocephin (ceftriaxone is used the treat bacterial infections). It's why certain studies show potential benefits of using triple antibiotics therapy over prolonged periods of time and I believe it's why agents like WOO & Thyme Oil have some benefit in most people with a compromised gut or immune system. Not to mention the fact that 5ASA's reduce the population of MAP naturally (aminosalicylates) and steroids thicken (although unnaturally) the mucosal wall, often leading to temporary periods of 'remission'. Immune boosters like LDN tend to work well for some and FMT does show promise for a number of people (perhaps because the increase in 'good' bacteria help to fight and kill the pathogens or at least better regulate the bacteria that making up the mucosal lining).

I realise no one knows for sure and I'd be lying if I said I believe it's the answer for everyone but I certainly do think that if the billions of dollars of research was being pumped into these areas (just like H. Pylori years ago) we'd have a cure by now, not more anti-inflammatories.

agree with Kevin and Soy, I've just experienced a strange thing myself. I've never had a severe form of uc, but i kept struggling with occasional small bleeding which my doctor attributed to a very weak mucus, practically it was impossible for me to taper asamax and enemas. In winter this year i went to Buenos Aires where i didn't have any diet (was eating tons of steak and drank almost a bottle of wine every day). However, all my symtoms disappeared, I tapered the meds, but i haven't had any bleeding for 3 months already which was totally impossible for me to imagine before. I don't know how much time this situation will go on, but one of the doctors told me that he doesn't rule out the possibility of some bacteria that mimicked uc just as eva here said.

Hello!

This is Hailey (from the letter lol) I've been recently introduced to this platform by my mom who was the person who wrote my letter all those years ago. I'm not really sure how to navigate this space quite yet but it is comforting knowing there is an incredibly supportive network of people out there who are all looking to live a normal life.

I guess I could give some updates if anyone was interested. Thankfully, I am and have not been suffering from any severe UC symptoms since the day I got better. I do have a small flareup here and there and my doctor typically prescribes me with flagyl and my symptoms die out. However, I have since developed a few (probably) unrelated health problems including pretty intense contact dermatitis to a range of things as well as most recently, psoriasis. I am now being treated with Stelara for psoriasis which is a biologic. Stelara has some evidence of helping IBD symptoms, namely for Chron's disease but there is some hope that it aids UC as well. I am hopeful that it will help both conditions and my colonoscopy this summer will come back with minimal inflammation. My parents were really scared to send me off to college with my strange skin problems and the possibility of a flare up in college so they wanted me to stay local. I am now a junior at Case Western Reserve University in Cleveland where I am studying Biochemistry and Psychology and hoping to go on to medical school.

I guess thats a little bit about me Although I have not recently been suffering from any symptoms of UC specifically, I want those in this forum to know that I am here to talk, especially to maybe younger people who are struggling socially with UC and to let them know I am in their corner. I remember how horrible it was going to the bathroom in school, being on different diets and medications and feeling like I just wanted to be normal. I want everyone to know they are not alone, and we're in this together.

hailey s said...
I have since developed a few (probably) unrelated health problems including pretty intense contact dermatitis to a range of things as well as most recently, psoriasis.

Hi Hailey,

This is IamCurious, aka BabeintheWoods. I found the Hailey's Letter thread so interesting when it was posted because I am also one of those lucky UCers who found relief through antibiotics.

I have found pycnogenol to be very effective for general recovery and relieving symptoms like 'dry eye' from my multiple eye surgeries. Looking into pycnogenol I also found a study showing that it may also help with psoriasis.

A recent clinical study found that this extract from the bark of French maritime pine trees can significantly and safely improve the symptoms of psoriasis. Of course no one is saying it is a 'cure' but perhaps it will help reduce symptoms.

http://www.lifeextension.com/magazine/2015/5/new-study-finds-pycnogenol-effectively-treats-psoriasis/page-01
Lead study researcher, Dr. Gianni Belcaro, said that, “As a natural nuclear factor-kappa beta (NF-kb) inhibitor, Pycnogenol reduces inflammation at the onset and can act as a natural, vegetal ingredient to control inflammation, swelling, and oxidative stress.

“In this study and in several others on chronic inflammatory conditions,” said Belcaro, “Pycnogenol has shown significant clinical results and without any side effects, making it a safe, natural, alternative for those seeking relief from the symptoms of psoriasis.”...

After the 12-week trial, 80% of the Pycnogenol group decided to continue using the extract, a good indicator of their emotional reward.

I completely agree with Jane that this illness is incredibly complex with many different etiologies. I have also read and been taught similar things regarding the gut microbiome. One of my professors mentioned in a lecture that eating a more plant based diet can help to reduce the amount of inflammatory bacteria in the gut and may help people with UC. Obviously there is still a lot of research that needs to be done on the gut microbiome but I am looking forward to learning more about it.

The study on pycnogenol is very interesting IamCurious. I’m interested in learning more about it. I have seen some products that are topical so I wonder if there would be a difference between topical treatments and a supplement. Thank you for informing me of it!

I am currently not on any medications or supplements for UC and thankfully my college experience has not been overly affected by my UC. I am attempting to eat more plant based to see if it will have any affect on how I feel but overall all has been good recently.

Thank you all for the warm welcome and it’s very nice to meet you all. I hope you all are doing well!

it's really great news Hailey! I remember that when I joined this forum in 2012, I read your protocol and it sounded so optimistic giving me so much hope for recovery that I immediately felt much better. I'm so happy to hear you are doing well. I read that your doctor prescribes you flagyl - have you tried xifaxan?. Xifaxan is extremely popular among the Polish uc-ers after one girl on the forum claimed it had cured her uc. I have a person in my family who is suffering from psoriasis and he says that the ayurvedic ointment sorion is a real miracle for him.

Thank you so much for all the suggestions and support! Does anyone know of any documented case or research involving UC due to pathogen as it seems many people on this forum have had similar experiences. I have not tried xifaxan but perhaps I will talk to my doctor about it to get his opinion. I live more towards north east Ohio, not really down toward the Ohio river.