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Haileys letter

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haileys letter
Regular Member
Joined : Nov 2006
Posts : 296
Posted 1/11/2010 9:17 PM (GMT -7)

This is my true story about how my little girl suffered under the care of the best doctors in the state of Ohio.

My little girl was diagnosed with Ulcerative colitis at the tender age of 15months.

She was so sick, dealing with blood in her stool at least 15times a day. She would wake up every single night at least 5 times. I will never forget the nights I sat with her in the bathroom, trying to comfort her.

She took 12 pills of Pentasa a day . I remember one lonely night in the hospital , a nurse came to me in the middle of the night, and she asked me, if the dosage that was on my daughters chart was correct. I said yes. She responded by telling me , that she had never heard this amount of this medication approved in a child her size. I was so sad. I just felt like a failure , like a mom that was helpless to her child. I was searching for the answer to why my 15month old little girl was so controlled by this disease. I took her the best doctors in Ohio, I stayed up hours and hours looking for answers on the internet for anyone that could her get better. It was so overwhelming.

My daughter is now  twelve years old. I am literally crying tears of joy as I type this. There was a time that I thought that tomorrow would never come for her. She faced so many health issues that just controlled her everyday life. Today she is a healthy beautiful little girl that is striving in everything that she does. She is so strong , she is determined , and she is just an amazing child.

I have a letter that I wrote about the sad days and long nights that we went through with Hailey Anna. I wrote this letter to be given to any GI doctor that wants to help another child get better. Since Hailey has been well, I have so many doctors that admit to me now that they know that bacteria or parasites cause UC and Crohn’s disease. They tell me "they do what works" They control the inflammation or they stop the immune system from trying to attack the invader that is attacking the body.

Please take the time to read the letter I wrote about what happen to my daughter. Many nights after I put her to bed, I read the letter. Her life is so different now. I know in my heart ,the body was made to be healthy. It will be faced with sickness , it needs to be nurtured back to health. It needs to be understood, and to be listened to.

January 20th 2007 

I am writing this letter in hopes you find some interest in what has happened with our daughter. She was a full term baby. Weight of 8lbs.12oz. She had slight jaundice after birth, which was treated at home. She did have a little problem with thrush at times when she was little. She also was a very colicky baby. She was breast fed for the first six months after birth.. At the age of 15 months she developed vomiting and bloody diarrhea. We took her to Akron Childrens Hospital and they did stool cultures and blood work. She was seen by a Pediatric Gastro and scheduled for a colonoscopy

September 5th 2001 her Gastro doctor explained to us that the biopsies from her colonoscopy showed there was no perianal disease noted. The scope was passed without difficulty to the level of the cecum. Throughout the entire colon visualized, there was loss of vascular pattern with lymphoid hyperplasia and erythema. He felt like her colitis was due to a milk allergy. He suggested we keep all dairy out of her diet and she was put on Elecare.

In July 2002 she developed blood in her stool again. She also developed telengiectasia on her face. August 2002 her doctor did another colonoscopy and it showed there was no perianal disease noted. The scope was passed without difficulty to the level of the cecum. Throughout the entire colon visualized, there was a granular appearance to the mucosa with a loss of vascular tissue and friability. Multiple biopsies were taken. This appeared to be a mild pancolitis.

At this time he put her on Prelone 6 mg b.i.d. and pentasa 500mg t.i.d. still with no dairy in her diet. She responded well. Her stools actually became constipated. While on steroids, she developed left facial drooping. Her doctor weaned her off steriods slowly.

In December 2002 she starting withholding her bowels. She was having bowel movements every three days and would complain of pain when she had to use the restroom. At this time she was on 500mg Pentasa t.i.d. Her doctor prescribed Lactoluse and we were told to keep her on a high fiber diet. She showed improvement and we eventually were able to get her to have daily bowel movements.

In January her family doctor sent her for a Rast allergy test and she was found to be allergic to 11 of the 22 foods they tested for. Her diet was changed to follow the results.

February 2003 we took Hailey for a second opinion to a Gastro at the Cleveland Clinic where a Meckel’s scan and more blood work were done. Her Current meds were: Pentasa 500 mg, Fer-In-Sol 75mg 0.7 ml po bid & 0.9 ml po bid Duphalac Syrup 10G/15ML PO 1.5 tbls bid, Miralax Powder 1 tsp. po Qd. This doctor felt her colitis was secondary to allergies. In September 2003 during a follow-up for rectal bleeding with her regular Pediatric Gastro he noted mild bruising on the anterior tibial surface of the face and ordered a CBC since she had a low platelet count of 150,000 one year ago.

While at his office the CBC results showed her platelet count had dropped to 40,000 and we were sent immediately to the Hematology-Oncology Dept. for evaluation of thrombocytopenia. She was observed and follow-up platelet counts were continued over several weeks and in October she was taken to her family doctor where she was referred to Akron Childrens Hospital Division of Hematology-Oncology department. Her platelet count was found to be 18,000 and she was admitted at that time for evaluation. Her work-up revealed an anticardiolipin IgA and a positive platelet antibody with a specificity to platelet-specific glycoprotein IV. In addition she had antibodies directed against Class I HLA antigens. Her reticulocyte count was not elevated, and her direct Coombs was negative.Her urinalysis, while it showed mild hematuria, was negative for proteinuria. Her ANA was negative. The doctor felt that her thrombocytopenia was immune mediated, and he administered WinRho.

Her platelet count increased to 202,000. The doctor felt that Haileys response to antibody therapy for thrombocytopenia confirms the immune etiology of her thrombocytopenia.

At this time her serum immunoglobulin levels were normal with the exception of a minimally low serum IgM. At the end of October 2003 her platelet count was down in the mid 60,000. She was then given winRho again and scheduled for a bone marrow aspiration and colonoscopy. Her biopsies showed continued eosinophilic infiltrate with some inflammatory cells.

Hailey continued to have problems. At this time we were scared and frustrated about how her health had deteriorated and we wanted more answers. We then took her to an Immunologist in Cleveland and she was then diagnosed with Selective IgM deficiency. Both her serum IgG and IgA were normal. Antibody responses to polysaccharide antibodies were abnormal. She failed to make adequate antibody responses after the Pneumovax. At this time she was put on Bactrim prophylaxis ( two teaspoons at bed time)and gastrocrom one vial q.i.d. She was also taking 12 pills of Pentasa daily. She continued to have flare-ups and missed 60 days of school due to her immune problem and colitis. She was admitted into the hospital several times and was given steroids to slow her colitis.

At this time we were very aggravated with the medicines that had been given throughout the years for Haileys condition. Her GI doctor explained to us that she was becoming steroid dependant. He wanted to start her on Imuran. He also talked to us about removing her colon. He explained that he has many children to go on to be "just fine." We were devastated. We expressed how we felt to Haileys Immunologist. He suggested we try high dose IVIG infusions he told us in high doses he has seen improvement with colitis. The side effects seemed less than the Imuran and we agreed to start the infusions. Hailey had the infusions once a month in high doses. Unfortunately, the infusions made her colitis worse and had to be stopped. We were at a dead end again.

We started taking our daughter to a natural doctor in August of 2006. He put her on many herbs to detoxify her body and probiotics to produce good bacteria in her bowels. We were so determined to give him our all. Hailey developed a bad cold and cough and under the natural doctors advise we continued to give her herbs in hopes that her body would fight back. Finally on October 26, 2006, her condition deteriorated to the point we decided that she needed to be seen by a true medical doctor.

We took her into her family physician and they found that she had pneumonia. We were always told due to her IgM deficiency that pneumonia was what we always had to worry about since her body would not fight it off. We felt so bad for her. She was dealing with her colitis, going to the restroom at least 10+ times a day and 5+ times at night. Now she had developed pneumonia. Her doctor said she needed to be treated with antibiotics ASAP to get the pneumonia under control. She wanted to give Hailey two shots of Rocephin, (one gram) her only concern was that it would make her colitis worse. We had no choice but to get the pneumonia under control and if she needed to be hospitalized for the colitis we would deal with that.

So they gave her the shots in her legs and we left the doctors office and Hailey slept for the entire day without any of her normal medicines and she was also not going to the restroom at all. She slept through the entire night with NO bowel movements. The first time this has happened in months. She woke up the next morning and went to the restroom. Her stool was formed. We were very surprised and confused. Since she did not have any of her medicine. The only thing different was the Rocephin shot she had for her pneumonia. She had a follow-up appointment with her family physician and she asked us how Haileys colitis was.

We told her how she slept all through the night without getting up to go to the restroom and how she went that morning and the stool was formed. She looked at us with disbelief. We asked her exactly what Rocephin targets and she said microorganisms. She then prescribed a ten-day course of Omnicef and said to wait and see what happens.

Since October 26, 2006, Hailey has had no signs of her colitis and is taking no medicines. We contacted her GI and explained how the Rocephin shot changed her colitis within a 24-hour period. He responded that he felt that was not possible. He told us to wait it out and see what happens. Since that weekend of October 26, 2006. He has made no effort to call her to see how her condition is.

On December 11th 2006 we took Hailey for a follow-up appointment with her Immunologist we

told him what had happen with the Rocephin shot. He explained to us that he has seen other antibiotics having the same effect, but never Rocephin. He cautioned us that her colitis may return.

He gave us a prescription for Ceftin to give Hailey in case she has a flare up. December 31, 2006 Hailey came down with the flu. She had vomiting and diarrhea. In the past every time our daughter would get the flu it would put her colitis in a major flare. She would go 30 times a day with bloody bowel movements. This time when she had the flu. She had NO pain, NO urgency, and NO blood in her stools. She had the flu like any other normal person would have it. Her stools also formed after the flu was over. We were amazed!

On January 8, 2007, Hailey went to her immunologist and we explained how she had the flu on New Years eve and how she was able to get over it with no problems. Her doctor was very surprised to hear that she was able to do so well with the flu. He was also surprised to hear she was still not taking any medication for her colitis. He kept shaking his head and saying how strange it was that she has made such drastic changes. That day he was much more positive and told us he was very interested to see if her IgM levels have changed. He took blood work that day.

On January 9, 2007, his nurse assistant called to tell us that Haileys IgM levels were in normal range. Her immunologist has assigned his resident doctors to start a case study on what has happen with our daughter.

Now for the strange part of our story. Around the same time our daughter developed bloody stools our family dog also started with the same symptoms. We told EVERY doctor that we took our daughter to that she and the dog both were having similar symptoms. In case you were wondering the dog was put outside to live in the garage and our daughter did not have much interaction with the dog after they both developed bloody stools. We also had well water at the house we were living at and we also had it tested since they both were suffering from bloody loose stools. They did many tests (over the last six years) and told us that there was no connection between the dog’s illness and hers. Our family dog passed away the same day our daughter was giving the Rocephin shot that has taken her colitis away.

We believe that our family dog and our daughter had gotten some type of bacteria that did not show up on the normal tests. We know this part of our story sounds very strange but this is what happened. We are a upper middle class family and live in a very nice clean home in a normal suburban neighborhood. We do not live around any other types of animals. Our previous home was constructed on an old cow pasture and one of our neighbors did experience bloody stool in the mother and young daughter and had to be treated. Also their well system had to be chlorinated due to the contaminates (unsure of what was found but it was a normal bacteria they test for in well systems). Our well system never showed any problems and we never drank from the neighbors well systems.

We are only telling you this because we really think that there is some type of bacteria that our daughter had in her system for six years and was undetected by the Normal lab tests available, why else would the Rocephin drug have this affect on her body?

Years and Years of this terrible disease with no answers or cures. The journey that we have taken with Hailey has been so overwhelming to our family. She and our family are living a very HAPPY and NORMAL life that we have not experienced since she was 15 months old.

This has been a true miracle in our lives. Today our daughter is happy, healthy, and a medication free child that can eat anything she wants with no problems. We have started our own journey to try to help others that are struck down with this terrible disease, we have been in contact with the drug company that manufactures Rocephin. They have contacted us and advised us they are forwarding Hailey’s story to their top researchers.

We would be grateful for any advice you could share on what has happened with our daughter. Most Gastro doctors are speechless and offer no explanation to what happened or have much interest in looking further into this possibility of a bacteria living inside the body that long. That is why we are persistent in telling our story to any medical professional that will take the time to look into using Rocephin or similar drugs for a first line treatment in stopping this disease.

The current medicine protocol used in the disease (seems to us) only to offer limited help with no prolonged effect. If we could only help just one person it would be worth it. Please contact us with any questions Thank you for your time and advice.

Sincerely,

Dave and Kelly

Post Edited (haileys letter) : 6/1/2012 8:26:10 PM (GMT-6)

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love4cats
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Posts : 458
Posted 1/12/2010 9:16 AM (GMT -7)
Thank you so much for the update. Your letter was one of the first posts I read in HW and I have thought about little Hailey often and I am so glad she is doing well.


Your experience is a perfect example of how little doctors know of the cause of UC and how quick they are to just prescribe meds to control the symptoms, rather than to find the cause.
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Got2Believe
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Posts : 436
Posted 1/12/2010 10:14 AM (GMT -7)
This is a true miracle. Rejoice in the wonderful blessing your daughter and family experienced. Hailey may be the only person in the world to defeat this so called uncurable disease. She is a speacial girl. Hopefully science and doctors will learn from this. Thanks to this letter and my faith in a higher power, I will never give up hope. Thank you!

 

You should contact that show on the Discovery Health network called Mystery Diagnosis ( http://health.discovery.com/fansites/mystery-diagnosis/about.html ) maybe they can run an episode about your daughter and UC can gain some more exposure. I don't want to sound rude or anything but Breast Cancer, diabetes, heart problems and other diseases are everywhere while scary or embarassing things like colitis and HIV fall into areas where nobody really wants to talk about.

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Eva Lou
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Posted 1/12/2010 10:27 AM (GMT -7)

While this is definitely an uplifting, heart-warming story, I'm hesitant to use the term miracle. It certainly sounds as if your daughter had some type of bacterial infection that mimicked IBD, but I don't think this holds true for many others. I personally had more than one Rocephin "shot" administered via IV, while hospitalized for strep pneumonia, septicemia/bacteremia, drug-induced hepatitis, & a whole host of other opportunistic infections. Thankfully, the Rocephin managed to get the pneumonia & septicemia under control & basically saved my life, but it did nothing for my UC- neither short-term nor long. So, in some isolated cases Rocephin may help, but please- don't purport it to be a cure for UC.

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Hellokitty
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Posted 1/12/2010 10:47 AM (GMT -7)
This is such lovely information. and i think it is true for me too. doctors seem to just over look this all the time over here in london. im wondering if this is what is wrong with me. the thing is when i juice fast my symptoms dissapear into nothing. with out the medication. sometimes i feel like fasting what ever is in side of me out. and it seems like it is something. im going to do a colon cleans program and it seems to work. thanks for that information. i beleive i will have to work with out doctors as mine just ingore me and say blood and mucus is ok. its only a little bit. god it makes me so pissed off. really. i will find my way and i think what you posted is true. it also makes me think i need to go to a high green diet as that has been posted on raw line. interesting.
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Got2Believe
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Posted 1/12/2010 2:10 PM (GMT -7)

I believe, (Got 2 believe), this one instance is a miracle. Of course, antibiotics or other treatments known to man for colitis are not cures because then we wouldn't have this website,,, we'd all be saying "Remember when we had UC..."

Someday whenever there is a cure or cures for certain causes of colitis people will look back at Hailey's Letter as the cornerstone for some evaluations and treatments. As for now we must all work and think together to help eachother get through these tough times. Hailey's Letter is the strongest testimonial to what possibilities are out there for treating colitis. The fact is that there's still a lot to learn.

I think that there are forms of colitis that are caused by a bacteria, fungus or parasites. These types need to be studied and ways to attack them should develop only after determining what the foreign or over populated organism is. Even if this were true, I would think that the length of time a person had colitis would affect how the long the body takes to recover but Hailey's Letter defy's that thought.  

If there is ever any type of cure for say "Haley's type of colitis" there would have to be new steps in evaluating the symptoms. First of all there would have to be extensive microscopic studies of bacterial growth in intestinal tracts and the typical human reaction to each different organism. (FYI: studies have shown over 300 different types of bacteria that are found in the colon.) Then the following questions would have to be answered by the colitis sufferer on a personal basis.

1. What environmental factors was the person exposed to prior to symptoms developing?

2. Have any family members or neighbors experienced similar symptoms?

3. How does diet affect UC symptoms?

4. How do all treatments administered affect UC symptoms?

5. How do antibiotics affect UC sypmtoms?

6. How did the digestive system work prior to UC?

All these ideas and more need to be questioned for each UC sufferer. When I got UC back in 2005 not one of these questions was asked by my GI...

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Hellokitty
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Posted 1/12/2010 2:49 PM (GMT -7)
did Hayley have mucus in the stool as well? just a question? just wondering if it is the same as mine.
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Malkavian
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Posted 1/12/2010 3:14 PM (GMT -7)
Hey, I was wondering, had she ever been tested for c. diff? C. diff colitis looks like UC, but is caused by a bacteria. It is not tested for very often, though.
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Againstodds
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Posted 1/12/2010 6:24 PM (GMT -7)
Congrats! It is a miracle, and I believe everyone has this chance. I ever saw a data on wikipedia indicating that up to 10-20% can maintain remission without any medication. I am absolutely not in this group. I would believe these patients also try many medications before they go into remission and maintain remission without medicines. Some here also report their success by different means.
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haileys letter
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Posted 1/12/2010 9:45 PM (GMT -7)

We want to say thank you to all of you that have wished good health to Hailey Anna. We wish the same for each and everyone of you all.

Got2believe thank you for the link to the Mystery Diagnoses web site. I clicked on the link , but it said that it was no longer available. I am going to research the web site further to find the way to send Haileys letter to them. I agree that Uc falls into areas that people just don't want to talk about.

 I really want to thank you... for taking the time to put into words exactly why I keep coming back to this forum.

I look at my daughter everyday, and I remember how weak and how sick she was. Those six questions that you posted are exactly what everyone that is dealing with this  controlling disease should answer.

 I want to tell each and everyone that is reading this , that I know in my heart and in my soul , that what happen to Hailey was a miracle. I watched my daughter suffer each and everyday from this controlling disease.  I never gave up hope and I never gave in.

Everyone suffering from this disease should answer those questions that Got2Believe posted.

HelloKitty, yes Hailey had mucus in her stool. I know what it feels like to be pissed off...channel that anger to fight this horrible disease.

Malkavian, yes Hailey was tested for C-diff. She was tested everytime I took a stool sample to the hospital over the course of six years.

Thank you again to everyone that posted for Hailey. I want you to know that the reason that I keep coming back to this forum is for this exact quote that Got2Believe posted....

Got2Believe said...

Someday whenever there is a cure or cures for certain causes of colitis people will look back at Hailey's Letter as the cornerstone for some evaluations and treatments. As for now we must all work and think together to help each other get through these tough times. Hailey's Letter is the strongest testimonial to what possibilities are out there for treating colitis. The fact is that there's still a lot to learn.


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ithurtsmom
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Posted 1/12/2010 10:17 PM (GMT -7)
Hey Kelly:

So glad to see you posting Haileys story again.  Keep it up!  Rebecca is still on meds and doing great.  Think of you often. xoxo

 

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ithurtsmom
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Posted 1/12/2010 10:23 PM (GMT -7)
This may seem to be a silly questions, but did you send your story to the CCFA?
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Boxermom2
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Posted 1/13/2010 12:37 AM (GMT -7)
When I was hospitalized with a flare and an infection that led to sepsis I was given Rocephin. I had a terrible reaction with such severe leg pains I thought I would die. They even sent me down for ultrasounds on the veins of my legs. Didn't help me at all.
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Got2Believe
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Posted 1/13/2010 8:41 AM (GMT -7)

Thank you for continuing to post here. A lot of new people probably check in and don't go back to older posts. Plus it can be real depressing when people are newly diagnosed and one of the first things we hear from our doctor is that there's no cure and we will have to be on powerful drugs the rest of our lives. It's good to know that someone's UC turned out like Hailey's did.

Let us know if you hear anything from that TV Show or any other studies that come from Hailey's Letter. I don't know if you've ever seen Mystery Diagnosis, but it's really interesting and Hailey's story would be perfect for it. Once you get on the website you should find a link to contact them.

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therearemiracles
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Posted 1/13/2010 9:51 AM (GMT -7)
Hi Kelly, 

When I did the Rocephin shot I was normal within two days, but it only lasted two days.

I've been diagnoised with Lyme's Disease. Finally a answer to my inflammation! Currently 5 years with UC. I'm on a weekly injection of Bicillian (my doc couldn't do Rocephin because the amount I would need and for the length of time, I would require a PICC line under my skin for IV treatments) so since Bicillian is cousin to Rocephin, I'm hoping to have positive results like last time. I'll keep you posted. So now I know, I do have antibodies for the bacteria that's carried by tick and yes I do have Lyme's Disease.

 I've had several tests done to confirm it.

There's only a handful of Lyme Literate Doctors in Michigan and thankfully, he's only a little over a hour away. He's so understanding and believes if we "pulse" with antibiotics off and on for long period of time, we'll rid the bacteria. Thanks for your support and emails!

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Mackster
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Posted 1/13/2010 4:21 PM (GMT -7)
Interesting story and great for Hailey.

Strange how this antibiotic 'rocephin' seemed to have targeted and apparently destroyed the invading bacterium that was giving Hailey UC (or at least the symptoms). Especially when most of us have been harboring the notion that antibiotics could be a 'trigger' for UC.

I don't know just how much serious research is being done for UC but I haven't much confidence in big pharma to dig deep enough and try to isolate the culprit(s) bacteria that seem to do all the damage to our colons. These bacteria are so smart they even fool our immune systems. Big pharma just love the profits they make on 'treatments', it's a licence to print money after all.

Long before I contracted UC I suffered for at least 25 years with duodenal ulcers. Of course I was prescribed the latest magic pills that were (supposed) to keep it in abeyance. Apart from suppressing stomach acid, they hardly did much to relieve the gnawing pain of ulcers.

Thanks to a pair of young Aussie doctors, 85% of stomach ulcer sufferers (including myself) are now cured.

Oh, big pharma tried every dirty trick in the book to discredit and bury the doctors but trials in Oz and later Europe proved that their isolation of the bacterium (helibacter)? and subsequent treatment using powerful antibodies gave a welcome relief to most ulcer patients.

The irony is, that I often wonder if the magic bullet that cured my duodenal ulcer may have been a precursor to my UC!
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subdued
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Posted 1/13/2010 5:45 PM (GMT -7)

Mackster said...
Interesting story and great for Hailey.

Strange how this antibiotic 'rocephin' seemed to have targeted and apparently destroyed the invading bacterium that was giving Hailey UC (or at least the symptoms). Especially when most of us have been harboring the notion that antibiotics could be a 'trigger' for UC.

Yah. I know what you mean. Apparently, some antibiotics target the bad bacteria in the colon. I think, though, in my case, having been on antibiotics for so long, I just didn't have enough good bacteria--and that's why fecal transplantation worked so well.
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mom2threehasU/C
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Posted 1/13/2010 6:55 PM (GMT -7)
Thank you so much for sharing this story with us...I love "happy endings" yeah

I may no longer believe in Santa...but I do miracles..& it was no coincidence that Hailey was healed
same day your dog passed. Whatever caused her to have colitis, b/c that "IS" what she had & however
it was introduced to her system IT'S GONE for now & wouldn't it be great if we could all feel as good as
she since "whatever has caused our colitis has in one way or another been introduced to our systems"
as well. I buy into the whole genetic link...but...please someone tell me what diseases are not related
to our genetic make up?????? I just HOPE within my lifetime there will be a greater understanding of just
what is happening here & with whomever (those nasty little bacteria creeps)! HOPE so for my kids :-)
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haileys letter
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Posted 1/13/2010 8:34 PM (GMT -7)
 Joan,

  I am so happy to hear that Rebecca is doing okay.  I do know that we sent Haileys letter to the CCFA when she first became well. The only research doctor that did take the time to contact was the

 Thomas J. Borody. The doctor that found the cure for ulcers.  He sent us an email saying that at that time he had limited amount of staff to research Haileys story, and wished her continued good health.

 I am going to send Haileys letter to the CCFA , and to Thomas J. Borody again, and see if they respond back. They may now, since she has been well for three years. It would be interesting.

 Linda,

  I hope you have found your answer! After five years of suffering. Please keep me updated, send me an email anytime. I wish you well :)

 

  Thank you to each of you for your thoughts, and you are all in my thoughts and wishes.

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ithurtsmom
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Posted 1/14/2010 9:59 PM (GMT -7)
From Macster: Thanks to a pair of young Aussie doctors, 85% of stomach ulcer sufferers (including myself) are now cured.


If they found a cure for stomach ulcers, why do they think UC is an auto-immune problem? Big pharma, don't trust them, no reason to cure anything.
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Mackster
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Posted 1/15/2010 4:03 PM (GMT -7)
I've tried to decipher your post Joan but I'm still not sure what your point is.

Maybe you could put it to me another way? (I'm not that bright) :-)
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ithurtsmom
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Joined : Nov 2006
Posts : 289
Posted 1/15/2010 8:46 PM (GMT -7)
Sorry about that. 

In your post you mentioned how stomach ulcers have been cured because they discoverd the bacteria that was causing them and can now get rid of it.  If a bacteria can cause bleeding ulcers in people's stomachs, why do they consider UC an auto-immune problem.  It would seem to me that it would also be a bacteria causing the ulcers in the colon.

 

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bookworm21
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Posted 1/16/2010 10:56 AM (GMT -7)
UC is considered an autoimmune problem because the immune system is "told" to attack our colon. This is why drugs like immunosuppressants and biologics work--it calms down the overactive immune system. But I guess there's always a possibility that it could be bacteria...

I'm glad Hailey is doing well. Just out of curiosity, who did she see at the Cleveland Clinic?
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Zippy123
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Posted 1/16/2010 1:19 PM (GMT -7)
That is a great story and happy the little girl is doing good now.

yes immune system seems to attack the colon, but for what reason. Bacteria, yeast, lectins? Is the immune system going crazy, or is it trying to kill something in the colon or both?

I agree with ithurtsmom, I do not trust big pharma either, why cure when you can feed them drugs for the symptoms all their life.
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IamCurious
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Posted 11/23/2010 12:27 PM (GMT -7)

napacabs said...
Ulcerative Colitis is still a poorly understood disease in many respects. There is debate still as to whether it is truly an autoimmune disease despite often being classified as such. I have learned the very important lesson as a physician to not purport that I or any of my colleagues truly understand the workings of the human body. There is so much that we don't know and discoveries that change the basic practice of medicine. For example, gastric and duodenal ulceration were discovered to be caused by a bacterium, H. Pylori. This was not discovered until technological advances allowed for this level of discovery. The same could be true for ulcerative colitis. We may one day isolate a specific type of bacteria that can be linked to the development of Ulcerative Colitis.

Hailey's letter,
Thank you for sharing your wonderful story. Antibiotics jump-started my remission too, but I can still feel regression creeping in when I stop taking probiotics or if I eat problem foods. I guess you can say my UC is managed but not cured. Perhaps someday there will be a true cure if they can identify the specific virus and/or bacteria that triggers UC, just as they have identified H. Pylori as the culprit that led to the cure of ulcers. But from reading stories on this forum I am skeptical there is a single cause/cure for UC. But your daughter is cured and we celebrate with you.
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