Ulcerative Colitis Success Stories.

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notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15142
   Posted 10/14/2011 3:53 PM (GMT -6)   
The purpose of this thread is to share techniques members used to get into remission. It is also an inspirational thread for those who are looking for ideas and hope.

Please e-mail me your stories. My e-mail address is in my profile (click on my username link). Whether you’ve had surgery, you’ve used traditional medicine or alternative therapies - we want to hear what worked for you!

If this thread is not on the homepage, it can be accessed through “Ulcerative Colitis Resources” sticky on the top of the board.

I am looking forward to hearing your stories.

Thank you to subdued for making this happen.
 
*If I posted your story and you would ike it removed or edited, please feel free to email me!
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (3200mg) + 6mp (50mg) + Pristiq (50mg) + Canasa (1g PM) + cerazette

Post Edited (notsosicklygirl) : 10/15/2011 3:34:32 PM (GMT-6)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/14/2011 3:59 PM (GMT -6)   

subdued's success story:

My Success with Subduing UC

It was 2006 and I was 44. I had been on antibiotics for most of my life, and I had been on many antibiotics that are known to destroy fecal bacteria. I was also not eating well. I had gotten divorced a few years back and was very depressed. All I was eating was chocolate. All I was drinking was HFCS beverages. I was bloated, passing gas, and having diarrhea every day. Never having heard of IBD, I was not concerned.

It was that fall that I had my first flare. I saw blood on my poo for the first time. I was scared. I searched the Internet for causes of rectal bleeding and found quite a few websites that talked about it. One such cause is colon cancer. My blood was bright red and my stools weren't dark. I didn't think it was colon cancer. IBD is another reason. Genetics was said to be the cause of IBD, and no blood relative of mine has or has ever had an auto-immune disease or digestive issue. I knew it couldn't be IBD. Hemorrhoids is yet another reason. I thought, “Hmm... It is possible” although it did seem that I was having a bit too much blood for it to be hemorrhoids.

I thought that of the three causes, it was probably hemorrhoids. I changed my diet. I stopped eating chocolate and drinking HFCS beverages. I started eating fiber. The blood gradually lessoned. After six months, it was gone.

I felt good. I started adding chocolate and HFCS beverages back into my diet. I figured if I started bleeding again, I would just stop eating chocolate and drinking HFCS beverages. I increasing ate more chocolate and drank more HFCS beverages. I started bleeding again in the fall of 2007. Right away, I stopped eating chocolate and drinking HFCS beverages . The bleeding did not get better. In fact, it got worse. Soon my poo was covered completely in blood and there was mucus too. I knew it couldn't just be hemorrhoids. However, I couldn't go to a doctor to find out what was wrong because my insurance benefits would not kick in until I was at my job for one year. I still had about three months to go. Three months past, and I was told I had to wait for the next enrollment date to apply. I waited, applied, and then waited again. It was a full half year from the time I first started bleeding again to the time I was able to see a GI.

I was in bad shape. I was extremely dehydrated, anemic, and peeing blood out my butt every five to 10 minutes. My colon was like dog meat. My GI could not even diagnose me because my colon was too inflamed to be scoped. He prescribed Asacol and told me to come back in three days for a sigmoidoscopy, at which time he was able to get far enough in to make a diagnosis. He said I had UC and prescribed prednisone. I was to take 40 mgs a day.

I was in such bad shape that I did not check the side effects for pred. After about a month of being on the pred and the bleeding stopped. My GI wanted me to start weaning off pred. I looked up pred on the Internet and found out that it damages the connective tissue. I knew I needed to get off it ASAP. I got down to 25 mgs, at which point, the bleeding returned. I upped the medication to 30 mgs. The bleeding stopped. I continued going up and down between 25 mgs and 30 mgs until the 11th week had past. I had read that prednisone should not be taken for more than three months. I didn't know what to do.

I searched the Internet for answers, and I bumped into an article about fecal transplantation. It talked about how antibiotics destroy bacteria and how putting someone's feces into the colon can replenish the bacteria that was lost due to antibiotics.

Considering that I had been on antibiotics for most my life, it sounded like a pausible solution. I asked my daughter if I could use her daughter's, that is my granddaughter's, feces. She said yes and came over for a four day visit. I was able to do three influsions. The bleeding stopped completely after the third influsion. Now it was time to get off of pred. I lowered my dosage by 5 mgs ever two days. It was too fast of a taper. My joints started making popping noises. My hands became stiff and painful. It seemed my joints were becoming inflamed due to the fact that my body was not able to up its production of cortisol fast enough. However, the bleeding did not come back. I was completely off pred within 10 days. A couple of days later, I saw my GI.

I told him I was completely off all medication, was not bleeding, was showing absolutely no signs of a flare, and was having perfect poo. He was very surprised and had me come in the following day for a colonoscopy. He kept saying “Amazing” the whole time he scoped me. He then said, “I guess the pred worked” in a voice that suggested that it's never worked so well before. I then told him how it wasn't the pred, it was because I had done fecal transplantation.

This was March 2008. The only one who was performing fecal transplanation was Dr. Borody, who is in Australia. I did not have the time nor the resources to go to Australia to get fecal tranplantation done. So I did it myself. Here's my protocol:

Donor - I choose my granddaughter for my donor because:
She had never been on antibiotics.
Blood relative.
She was unlikely to have any fecal bacteria infections due to her young age.

Supplies - I spent less than $5 on my supplies:
One syringe with a long tip that I had bought at a local drug store.
One small plastic container that I found in the kitchen.
One small plastic spoon that I found in the kitchen.
Bathroom water faucet.

Timing - My goal was to transfer the feces from my granddaughter to my colon in as little time as possible:
Granddaughter has movement.
Grab diaper and run to the bathroom.
Scoop feces into plastic container.
Add about the same amount of luke-warm water from the water faucet.
Mix.
Add to syringe.
Put up the butt.

Amount - As much as possible:
Babies don't poo much - about 1 to 2 syringe's worth (which is very little.)
Later I found out from others that the greater the amount, the harder it is to hold it in.

http://www.healingwell.com/community/default.aspx?f=38&m=2231419<!-- Edit -->


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/14/2011 4:02 PM (GMT -6)   
haileys letter's success story:
 
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  nine 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

Subject: Six years old with UC

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

http://www.healingwell.com/community/default.aspx?f=38&m=1689855


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/14/2011 4:04 PM (GMT -6)   
Meesh's J-Pouch Success Story:
 
I haven't been as active here for awhile as I had been when I actively suffering UC. Once I decided to have j-pouch surgery I moved over to the boards on j-pouch.org (where I am Meesh62) because they were more relevant to me. But I have had great success with my surgeries and just wanted to let you all know that there can be an end to the medication and relapse merry-go-round you may be experiencing if your meds can't keep you in remission. While I regret not having done this sooner in retrospect, had I experienced any complication I may have had a harder time accepting them had I not reached the point of "I can't take it anymore!" with my UC.

I was diagnosed four years previously almost to the day that I had my take down surgery. In that time I was on Prednisone for two years, had severe anemia, was on Remicade for two and half years ... now I am completely medication free and while my stool is soft and I have a tendency toward diarrhea, I have COMPLETE control over my bowels and just shy of three months post-take down, most days I only go 4-6 times. Most nights I am sleeping through the night. I am almost back to a completely non-restricted diet (fear of blockages has me leery of raw celery and popcorn still).

My first surgery was January 12, and to be honest, it was pretty brutal. I was in a lot of pain for several weeks. I also had a hard time adapting to the temporary ileostomy. But I did feel a lot better after the surgery and got my "zip" back. By the time I was ready for my take down surgery I was feeling like my old self, lots of energy, no pain at all ... just the hassle and discomfort of the ileostomy bag (I kept leaking and the fluid burned my skin, the mark from the irritation is only JUST starting to fade).

The take down surgery, April 6, was a piece of cake, as was adapting to the new plumbing. There were some hiccups along the way -- a couple of weeks of night time incontinence was far from pleasant, reintroducing foods was (and is) a little scary, but all in all, I feel fantastic, the j-pouch works well, my "new normal" is pretty darn close to normal normal. For the most part my stools, while soft, are well formed. I have not infrequent bouts of diarrhea, but a tweak to the diet usually fixes that and there's no discomfort, no sense of urgency at all, even when things are loose. When I have diarrhea I get more irritation around the anus, my stool is more acidic without a colon. I use a barrier cream down there to keep comfortable.

I'd be happy to talk to anyone who has any questions.

Meesh
 

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/14/2011 4:09 PM (GMT -6)   
sas's success story with fecal tranplant:
 
Hi Everyone,
 
Wanted to share that I am still symptom free after my FT.  Several people have reached out to me off the forum regarding FT and how frustrated they are that it is not available as a treatment option.
 
I know that it is not the solution for everyone - but I am very grateful that I have had this 3 months and feel so lucky that I had a dr. willing to do the FT.  Everyday I pray this is the way it is now.  I am still taking 2 Lialda a day.
 
Thank you for all of the support and well wishes along the way!
 
I will keep you posted.
Stacy
 

Post Edited (notsosicklygirl) : 10/31/2011 2:54:29 PM (GMT-6)


notsosicklygirl
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Date Joined Dec 2008
Total Posts : 15142
   Posted 10/14/2011 4:14 PM (GMT -6)   
mudua's success with triple antibiotic therapy:
 
For the last 12 months no meds were working for me and I was seriously considering surgery. I did this antibiotic therapy as a last resort. I have a appointment with my docor tomorrow and I will get his opinion if I need to go on medications again.

I am from South Africa and 17 years ago I was working for a Canadian company in South Africa and they sent me to Vancouver to help on a project that was behind schedule. Whern I returned home after the project , I started getting about 20 bowel movements a day. I was given immodium by my doctor and after that my bowel movement lessened but I started bleeding heavily. I visited a American Gastro who did a colonoscopy on me and I was diagnosed with ulcerative colitis. I think that I contracted by 'colitis bug' in Canada

Initially my ulcers were mainly at the rectum but over the years it spread up the colon

I started with salazopyrine and cortisone foam enemas. It helped calm my colitis but after a while it did not help anymore. I went on pred but it made me very sick and I went off it very quickly. Vitamin E enemas helped me initially but after a while they also stopped working

Today I felt like I felt before I had UC. I am keeping my finger crossed that fusobateria was the cause of my UC and the antibiotics have got rid of it and my UC may never return again.
 

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/14/2011 5:18 PM (GMT -6)   
NatWell's Success with Helminth Therapy:
 
Hi Dad, I'm not sure if your still checking this thread but I hope you are. I have been taking Ovamed now since March 2011 and it has been a miracle for me. Yes, it is incredibly expensive and I have exhausted all of my savings but it has been more than worth it. I was on 60mg prednisone, 10mg/kg remicade once a month, 150 mg imuran all at one time, 89lbs with a TPN for nutrition... and none of this was even touching my UC symptoms. I was basically going into the hospital every couple weeks or so just to be stabilized and I literally looked like a skeleton with a basketball head. I have received 14 units of blood since November 10' and probably spent at least 50 days in the hospital from November-March. It was the WORST nightmare of my life. Anyway, started taking Ovamed in March and I am now up to 115lbs (just 5lbs below where I am normally) , one (if even) stool per day, and I am employed and able to maintain my job, go out with friends, like I said I have my life back. I am currently ONLY taking 150/100 mg of Imuran and that is it. I plan to quit Imuran eventually but I'm still working on convincing my GI that I am actually better. I have trouble believing it sometimes myself considering how bad my symptoms were and how unresponsive I was to everything. I was maybe a month away from calling it quits and getting the surgery.... THANK GOD I didn't. No, I am not completely healed. I work really hard with my diet and as long as I stay on track I feel pretty good. I do get nauseated a lot but I think that is mostly from getting off all of the drugs especially Prednisone. Anyway, I really hope you see this and I pray that your poor daughter is doing better. Nothing worse than having this disease as a young woman- especially considering she is probably trying to start college and I can't imagine dealing with this in school. Thankfully I was graduated when this nightmare began.
 

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/15/2011 3:30 PM (GMT -6)   
saralee's Success Story:
 
Hi everyone, I have been out of touch since last Summer. Many health issues all at once landed me in the hospital twice, then rehab, then slow climb back to health. Basically I am in my eighties and developed UC when I was 72, then went into remission with Asacol for eight years. I asked my GI if I still needed to take 4 Asacols a day and he said "NO" so I stopped. Within four months, I had a full flair - blood, mucus, many accidents. I changed doctors and the new GI decided that I needed a heavy dose of Prednisone. That was awful!!! I felt like I was on speed. I was really mean and mad at everyone - especiallly my poor husband. At this point, I had been in flair for 7 months and had lost 45 pounds,cuz of the diahrrea. Went to my primary care doctor (who is from Armenia originally) and she took me off Prednisone and put me on Hydrocortisone which is similar, but less hard on the body. I felt much better within a day of the change. However, I was still having the colitis like mad and dared not go anywhere without a diaper on. That same doctor prescribed tincture of OPIUM - .5 millileters 3-4 times a day in about a fourth cup of water - preferably before meals. It worked like a charm!!!!!! It quieted the spasms of the colon and made life so much better!!! I have asked my GI why he didn't prescribe something that gave me so much relief and he seemed scared of the legal aspects of it. But you do not get high from it, you just get your life back. I am now in remission and no longer use opiium. I am currently on 6 Asacol pills a day. My question is why don't doctors prescribe this more often? It was a blessing for me.
 

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/15/2011 3:33 PM (GMT -6)   
MyUC's Success Story:

MyUC is here.  I am not a pusher of Imuran for Imuran's sake.  In fact let me be clear that I would rather not take Imuran at all.  Going further I would rather not have UC at all either.  However let's get real.  I have had ulcerative colitis for the last 20+ years.  Real bad colitis.  A lot of blood, mucus, urgency, worry and tears.  On top of all that I missed out on a lot in life because of my fear of soiling myself which I did a few times just so you know. 

I went on sulfasalazine, asacol, prednisone.  The asa meds didn't help and my colitis a spread from the just the sigmoid region to take over my entire colon.  Trust me it was bad.  I somehow made it through college, dental school, residency and work.  All with bloody diarrhea following me wherever I went.   I eventually resigned to how my life would be.  I lost weight, I lost energy and to be honest I lost my fight with UC. 

I accepted what my at then time crap GI doc told me.  He said my colitis was mild and fine the way it was.  I knew the truth but stupid me I trusted him.  He is very well respected in the medical community.  My wbc spiked, my eosinophils (a type of wbc) went through the roof.  I saw hem/onc docs, infectious disease, etc...  They thought I had a leukemic blood disorder and put me on chemo drugs.  Horrible stuff. 

They didn't put 2 and 2 together and make 4 and just realize that my immune system went bonkers from having uncontrolled uc for so long.  I eventually took myself to a major city and found care at one of the most prestigious medical schools/hospitals in the country.  They immediately said my  immune system was respsonding to my chronic and very active colitis.  Predisone didn't help, asa meds weren't working.  They suggested Imuran.  I read about it and got scared, etc...  I researched it and asked about 5  different GI docs about the safety of it.  All of them said it was considered very safe for UC use because we use it a much lower dose than pure transplant patients.  Between all of them not one of them could name a patient that had developed a major complication from Imuran use for the use of treating ulcerative colitis or Chron's.  In fact one of the doctor treats his own daughter with Imuran and has for twelve years.  If it's good enough for his own daughter it's good enough 4 me. 

It knocked my uc out in the first round and I have been in a solid remission for the last 2+ years.  One bowel movement every 1-2 days.  That's it, nothing else.  I have never had a side effect that I am aware off and get monitored every 3 months.  Never a glitch or blip.  Just smooth blood results and nice control of my uc.  I have even lowered my dosage with no problems and added Canasa suppositories to control the rectum. 

All I can say is that imuran has worked very well for me thus far.  Things may change in the future but for now I am very grateful for my current GI doc and that Imuran has saved my colon and given me my life back.  I no longer care where a bathroom is.  In fact I am aware of other non uc people using the bathroom more often where I don't even care to use one.  Be at peace with your decision.  I am with mine.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/30/2011 1:38 PM (GMT -6)   
I would love to add more success stories to this thread.
 
Please email me your success stories!!
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (3200mg) + 6mp (50mg) + Pristiq (50mg) + Canasa (1g PM) + cerazette

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/31/2011 12:45 PM (GMT -6)   
fruitgirl's success story with mesalamine!
 
I was diagnosed with UC in January of 2009. The symptoms started in November of 2008, about four weeks after my first child was born.  In December, I started taking a probiotic supplement, and my symptoms got much better, so my GP held off on sending me to a GI.  In early January, the symptoms reappeared, worse than before, so I was sent to a GI.  He ran me through the gamut of stool sampling, and after all of those came back negative, scheduled me for a colonoscopy at the end of January.  By that point, I was having between 15-20 extremely urgent bowel movements a day, with some (but not much) blood.  I was over 25 pounds below pre-pregnancy weight (had gained between 20-25 when pregnant) and was only 3.5 months post partum.  I was so weak I couldn't get out of a chair if I was holding my son, and he was under 15 pounds at the time. 
 
The scope showed pancolitis.
 
I was initially prescribed Asacol (twelve 400 mg tablets/day) and antibiotics (I forget if it was Flagyl, Cipro, or both).  I quit taking the antibiotics after a couple of days because they made my nausea unbearable.  about a week after my scope, my symptoms had very, very marginally improved.  We discussed prednisone, but decided to start nightly mesalamine enemas instead.  My symptoms immediately improved, and continued to improve.  By early-mid March, I thought I was making good progress towards reaching remission (I think I was down to about 3-4 bowel movements a day and the urgency was improving), when my son brought a tummy bug home from daycare, which I also got.  My symptoms quickly got worse.  At that point, my GI and I decided to start pred (it was March 16 - I remember it was the day before St. Patrick's Day).  I started at 40 mg, and took that for five days, then 30 mg and 20 mg, each for five days.  After that, I'm not sure how long I was on each dose of pred.  At any rate, I went to 15 mg, then 10 mg, then 10 mg every other day, then I quit.  I was totally off by early May.  So I was on pred for just about a month and a half.  I remember that when I quit, I was a bit shaky, symptom-wise for a while, where I'd have a bit of urgency one day, or three or four BMs another day, but I stayed the course, kept up with my nightly enemas, and kept my diet bland.  Everything continued to improve, until I was back to "normal."
 
After I reached solid remission, I stayed on nightly enemas for about a month, I think.  Then I tapered to every other night for a couple of weeks, and finally to twice weekly.  I found some studies showing that people who use mesalamine enemas twice a week in addition to oral meds stay in remission longer than those who only use oral meds.  So I figured it was worth it.  My former GI fully supported that decision, as does my current GI (I switched b/c my old GI retired and I moved across the country).  I also switched from Asacol to Apriso, but not until after I'd tapered the enemas to twice a week.  My GI and I didn't want to change too many things at the same time.  I was doing just fine on Asacol, but wanted the convenience of once-daily dosing.  Plus, I had been seeing some Asacol tablets in my stool, and could tell they still contained some medication.  I'd read studies suggesting that UC-ers have a lower than normal gut pH; as Apriso starts dissolving at a lower pH than Asacol, I thought it might work well for me.  My GI said he'd be happy to write an Rx for Apriso. 
 
Anyway, I've been in symptomatic remisison ever since.  I had a colonoscopy on October 20, 2011 (my first one post-diagnosis) that showed absolutely zero inflammation anywhere.  I had two tiny polyps in the rectum, which were removed.  My GI suspected they had formed during my flare.  The biopsy on them was negative. 
 
I do want to address the abscess/fistula I am currently dealing with.  In late July/early August 2011, I developed a perianal abscess.  It was drained by a general surgeon and things seemed to be going well. In mid-August, I noticed some pus had collected in the area, and went back to the general surgeon.  She suspected a fistula and sent me to a colorectal surgeon.  As it stands now, I have an anal fistula.  I see the CR surgeon again later this week, and we will hopefully schedule surgery soon.  I believe he will do the LIFT technique.  Both my GI and CR surgeon think the abscess/fistula developed independently of my UC (ie, the fact that I have UC is irrelevant) because I am in both clinical and symptomatic remission.  Plenty of otherwise healthy people get abscesses and fistulas and I have a fairly strong family history of them (grandmother, aunt, and uncle on my mom's side). 
 
So, there you have it. 

Post Edited (notsosicklygirl) : 10/31/2011 2:54:12 PM (GMT-6)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 10/31/2011 2:52 PM (GMT -6)   
ByeByeUC's j-pouch success
 
I was diagnosed in 2005 with UC. I had symptoms for quite a while but I was scared and I ignored them. It got too bad to ignore and that's when I went to see a GI doctor.The scope showed that it was throughout my entire colon. They put me on Asacol at first and that did absolutely nothing and then put me on steroids. The steroids helped at first but I hated the side effects. After about a year the steroids stopped working. I was on 6mp, pentassa, rowassa enemas, liadia....you name it...nothing worked. I then was admitted to the hospital for an infusion treatment of cyclosporine for 7 days. It worked for 6 months and then I flared worse then ever. It was at this point that I was feeling absolutely hopeless. My last hope was Remicade and like everything else, it didn't work. My dr. asked me if I wanted to try Humira and I said no, I'm done, please refer me to a surgeon. I couldn't take another minute of dealing with UC.

I had J pouch surgery of June 2010. I had it done in 2 steps. My final surgery was last October. It was a very tough surgery to get through. A lot of crying was involved! But I had the support of my family and I got through it. I am happy to say that I am UC free now. I would do it over again in a minute! I was sick for so long I forgot what it feels like to be healthy again and it's so wonderful!! I can do things with my kids again. I can enjoy food again. And no more dangerous drugs! I am so thankful for this surgery. It's a scary thing to have to face and I think you have to have UC bad enough to even think about surgery. I was really, really ill and my surgeon told me my colon was so badly worn out that it would have perforated in a short time. When your UC is severe you need to think about these things. It can be life threatening.

I consider myself cured, however, I would like to think that a cure for UC doesn't involve removing a major body part!  The end result is I'm healthy again and I owe it all to this amazing procedure!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 11/6/2011 9:55 AM (GMT -6)   
I would love to add more success stories to this thread.
 
Please email me your success stories!!
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (3200mg) + 6mp (50mg) + Pristiq (50mg) + Canasa (1g PM) + cerazette

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 11/12/2011 9:55 AM (GMT -6)   

Colonstorm's diet success story.

Ulcerative Colitis or Food Allergy?

Hi, I am new to this forum and just wanted to share my experience in hopes that it might possibly help others with a similar condition.

In October of 2004, after many medical tests, I was finally diagnosed with severe Ulcerative Colitis (UC). As a 48 year old Aerospace Engineer with a wife and family to support, the news was devastating. My symptoms were frequent bouts of extremely painful bloody diarrhea (up to 15 times per day), intermittent fever, headache, nausea, vomiting, rapid weight loss and anemia. Temporary relief was only available with Prednisone, a powerful steroid which can only be take short term. None of the other anti-inflammatory drugs seemed to have any effect whatsoever. Ultimately, my options were surgical removal of my colon or expensive monthly infusions of an immune suppression drug (Remicade) for the rest of my life. I was missing a lot of work, my wife left. I began sincere hourly prayers to Jesus to either cure me or to please bring death, the suffering was immense.

I struggled on in this earthly hell, unable to sleep for more than 2 hours a stretch, for nearly 5 years, continuing my hourly prayers. Then, one glorious morning, while attending a Catholic retreat, it was revealed to me that the entire root cause was a frequent staple of a high protein diet…. eggs. It turned out, as I believe, to be Jesus’ answer to my prayers. After only 11 days, all of the terrible symptoms miraculously vanished. I dropped every prescribed drug without issue. An allergy skin test confirmed sensitivity. My doctor still insists the UC is only in remission, the disease will return, but I’ve been drug free and healthy since June 26, 2009. You decide. Now I give thanks to God for every precious day of my humble life.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15142
   Posted 12/5/2011 2:59 PM (GMT -6)   
I would love to add more success stories to this thread.
 
Please email me your success stories!!
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