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Crohn's Disease Forum » Your Story » Success Stories » My wife's battle to beat Crohn's


02-25-2016, 06:25 PM   #1
Finallyfree
 
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My wife's battle to beat Crohn's

I'm glad I stumbled on to a site to get my wife's story out and hopefully help someone else. I don't know if I can name doctors or hospitals, so I won't for now. But I want you folks with digestive problems to know that there is help in conjunction with or outside of a Gastro specialist. I will tell this in an outline, timeline form.
1) In the early 1980's, my wife developed diarrhea after having a lot of surgeries for about 8 years.
2) Diagnosed with Crohn's disease in the late '80's.
3) In Aug. 1993, 6 feet of small bile was removed and 1 foot of large bile due to the Crohn's disease. When you lose the junction of the large and small bile your body cannot absorb Vit. B12. We were not told that. When her body depleted all the B12, she ended up in an ER. Now, shots for life!
4) In about 1997, she developed a fistula and had a ceton put in to keep it drained and open. Doctors had told us the normal things: can't be cured, it's a life long disease, have to be under a Gastro's care, along with the usual medicines. When I asked about removing it, were told the ceton would have to remain in place forever. After a couple years of it falling out on it's own and having to be replaced, the surgeon changed his mind, said to try without it and it healed without incident.
5) In Dec. 2000, her surgeon made her an appointment for 6 months but said he doubted she would be able to wait that long.
6) In Jan. 2001, I was listening to a Chiropractor/Nutritionist on TV speaking with a minister from Ohio who was telling his story about how he got rid of his Crohn's disease. I called and made an appointment ASAP.
7) In Feb., the doctor told us with testing, diet, adjustments and supplements, my wife would be able to beat this disease. The tests were different from any other she had: 2 day stool analysis, hair analysis, diet survey, and more and when the results came back, he went over them all and handed us a copy of all the results. He said he could help her if she would do what he said, completely.
8) It was now April 2001, about 8 -10 weeks into the diet and supplements and improvement was noticed after the first few days. The diet had been hard but we did it together to make it easier for her. Then, bad news.
9) In April, my wife's mother had a severe stroke. She stopped all but the supplements to travel to the hospital and assist with her rehab for the next 3 months. She never returned to the diet but continues some supplements to this day.
10) In 2005, my wife had a colonoscopy and the Gastro surgeon was very upset that she had not been under any ones care. After the exam he was still a little hostile so I asked how bad the Crohn's was. He said she still had it. I said again "how bad"? Well, there was some around the juncture. I was upset. I told him that he was the last Gastro doctor she had seen, her bile was hard as a rock, she was full of disease and he had done nothing that helped her. He got quiet. He offered antibiotics, my wife refused and she has not taken a medicine for Crohn's disease for 15 years.
In 2013, my wife had a mesh in her stomach create a hole in her bile and fluid ran out of an open would for 6 months. The surgeon figured it was Crohn's and we couldn't change his mind. At 72 lbs. and on the verge of death, he operated and removed all but 5 or 6 feet of small bile. I asked how healthy the remaining tissue was and he said it was fine. Not a word about Crohn's disease! Might it come back? Sure but so does colds and flu. Without the help of her Nutritionist, we both believe she would no longer be here. Please don't use this story to quit your present doctor. But this is her story, this is her result and this is her life for which we thank God!
02-25-2016, 06:45 PM   #2
Clash
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Welcome to the forum. So sorry to hear of your wife's struggles. I assume by "small bile" you mean small bowel and that she had a small bowel resection. Im assuming by the bowel being hard that it was due to the formation of scar tissue which can make the bowel rigid and narrowed.

My son had a small bowel resection as well but the the area that had to be removed was not near as large. Unfortunately, surgery doesn't get rid of CD. In fact, the odds of CD returning, most likely at the anastomosis site is fairly high, 50%. My son had active disease reoccur within six months within in 9 months the CD went from being located at one spot to all throughout his large bowel as well.

The problem is a person can live without there large bowel but cannot live without the small bowel. So it is important, no matter the treatment you choose, that you get regular testing. CD can be insidiously silent meaning inflammation can be simmering and damaging bowel without any outward symptoms. In fact, my wasn't even experiencing outward symptoms when surgery was required and is still asymptomatic even though the inflammation is present and doing damage.

I wish your wife continued health.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-25-2016, 07:08 PM   #3
ronroush7
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I agree with the above.
02-27-2016, 08:23 AM   #4
NiKo_V
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With Peace & Love Always Friend
03-01-2016, 09:13 AM   #5
Finallyfree
 
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Thanks to all for your responses and I am sorry about my spelling. I did mean "bowel". The confrontation with her doctor after her colonoscopy resulting in him commenting that the large bowel was hard because of "fecal build up". I asked him why, if that was the case, didn't he take care of it because he saw her first. He didn't answer. I know that the common answer is "it cannot be cured" and you have to take meds, but my wife is living proof that it's not true. Her nutritionist first put her through a detox because her digestive tract was full of a yeast infection most likely because of all the antibiotics from multiple previous surgeries (unrelated to bowel disease) which kill good and bad bacteria and we all need the good ones. Then he eliminated the allergic foods and built her system back up. My wife takes an adult formulated probiotic every day and they are not cheap and we are not wealthy but they are effective. When this first happened, we were told this mostly occurs in older people, but the nutritionist was seeing a local girl, age 10, and a 12 year old girl from California who was flown across the country 3 or 4 times yearly for evaluation and treatment along with supplements and both were doing well. In the 1980's, bowel disease was almost unheard of in oriental countries. It's sad to hear of so many young people with Crohn's today. It was not cheap for us to see an alternative doctor since insurance would not pay for supplements or some of the tests but our only regret is not knowing about nutritional benefits sooner. Her last surgery, to repair the mesh erosion, left her with 5 or 6 feet of small bowel. He said if he took any more, she would be on a feeding tube the rest of her life. So, my wife enjoys a fairly good life with 5 or 6 feet of small bowel, 4 feet of large bowel and only takes probiotics daily and a B12 shot monthly. My wife's doctor is here in Western PA and has helped people with other bowel diseases as well. I would tell you the name of my wife's doctor but I don't know if this website allows it. I'm sure there are others who offer this kind of testing and treatment. I'm not telling any one to stop their medication or quit their doctor but what would it hurt to have a diet change or try some supplements under the care of another doctor? I wish you all the best in your battle with Crohn's. That includes those of you that don't have it but are there for the loved one who does.
08-18-2017, 10:06 AM   #6
richard1353
 
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This is a impressive story that are moved to tears! For the immortal love of your and your wife, the struggle of CD ......
08-20-2017, 01:01 PM   #7
Finallyfree
 
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Thank you Richard1353! My first colonoscopy was in the late 1980's and the results were diverticulitis and CROHN'S disease. I have had several colonoscopy's sense then and none showed the Crohn's disease again. I never took medicine for either condition. That dreaded disease is caused by inflammation and after finding the right doctor, he put my wife through a detox, removed the offending foods from her diet and rebuilt her with diet and supplements, and she is doing well, 17 years later. I don't know of anyone with Crohn's that has went that long without meds. A friend of ours, (30 yrs., married , kids, good job) came to us and asked what was done to help my wife. I explained it all but told him that without proper testing, the same things would probably not work for him. He tried on his own but ended up in the hospital. He finally went to see the same doctor as my wife but would not follow his instructions. He got worse and had to have another surgery. After going back a second time, not following his instructions again, he ended up losing his job and is on disability. A good book to read on nutritional healing is called "Guide to 21st Century Medicine" by Dr. Martin Gallagher. I have found that most of us prefer to take a pill for the symptoms instead of taking the time and money to find and do battle with the disease itself. Insurance usually will not pay for natural supplements and I have never found a regular doctor who would admit that Crohn's can be cured. Our family doctor recently told us that since my wife has had no trouble for 17 years that it must be a miracle. God has blessed us with an answer to our prayers and my wife and I thank you and everyone for the well wishes and prayers. In return we pray that all you folks suffering from this will find a way to beat Crohn's Disease too.
08-20-2017, 02:31 PM   #8
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I went over 20 years without medicating Crohn's. Pure luck. No special diet. Then it came back like a thunder bolt. In the last 5 years I have had a resection, absess removal, Illiostomy, reverse illiostomy and adhesion removal with resection. There is no rhyme or reason. If you are in remission - enjoy it and hope it continues but at some point Crohns may return. In the past 5 years I have used Humira- developed antibodies, Cimzia briefly until my joints just could not take it anymore and now on Remicade with low dose imurin. Good Luck but I would continue to monitor your Crohns with a gastro.
08-22-2017, 09:07 AM   #9
Finallyfree
 
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Sorry to hear that your Crohn's came back so bad. If it does return for my wife, the first call would not be to a Gastro. It would be to the nutritionist/chiropractor who cleaned up what multiple Gasto's couldn't. My wife was 48, 5 ft. tall, weighed 120 lbs. when she went to the nutritionist for natural supplementation and diet. Her weight dropped to 96 lbs., a perfect BMI for her (which she held for 14 years), she quit having "hot flashes", and has never had a UTI since. She has not quit medication, as you did, only now the meds are natural. I have read about the side effects associated with your meds and can tell you for certain, neither of us would take them. If that is a persons choice, I respect that, but from our experience, meds treat the symptoms not the problem. I do not understand why people are so reluctant to try a new approach but eager to put medicine into their bodies that could give them side effects that are worse than the disease or even cause death. No one has to give up their meds to go to a nutritionist as my wife did. If the testing shows a problem, a diet is designed for your specific results, that requires specific supplements for you, designed for your specific condition and never once did that doctor tell her to stop her meds. She did that because she didn't need them any more. I know that it is hard to accept that a doctor can be wrong but they are only human and in many cases, natural supplements and diet change can give better results than pills. Any disease may return but bad side effects of medications can last a long time. Recently, we talked to a well known local surgeon who's son has Crohn's and he would not consider taking him to my wife's doctor and a lady called and talked to us because she was scheduled for an ileostomy but when I told her about the dieting part, I knew she wouldn't go. Later a mutual friend said she didn't go and had the ileostomy. Our financial advisor's wife got C-Dif and it got so bad she lost her job but he would not take her to this doctor that was a half hour drive from his home. But, there are others who have went and came back and thanked my wife for telling them about her success because they too had success and were very happy. I have studied this disease for a long time and spoke with lots of prominent Gastroenterologists in our area, but they do what they learned in school and are not willing to believe in change. So, like all things in life, we make a decision and live with it. If only one person gets some good from this, it will be worth the discussion. Best wishes and may God Bless you!
08-22-2017, 03:12 PM   #10
Guerrero
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So could you please enlight us about the nutrition and supplements your wife is taking please?
08-22-2017, 05:00 PM   #11
Finallyfree
 
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Sure. As for maintenance for her bowels she takes a 30 billion probiotic designed for people over 50: one/day. Since her surgery in 1993 consisted of removal of the juncture of the small and large bowel, she must take a B12 shot monthly which I give to her.
08-23-2017, 02:30 AM   #12
Guerrero
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Which probiotics precisely?
08-23-2017, 02:03 PM   #13
Finallyfree
 
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She uses : Renew Life Ultimate Flora Probiotic, Adult 50+, 30 Billion.
Please remember that this product is not what got rid of the CD to begin with. It is just what she uses daily as a safeguard. With her having a shortened bowel, it will hopefully keep her intestinal flora flourishing and it was suggested by a nutritionist.
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