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Crohn's Disease Forum » General IBD Discussion » Long term remission vs Cure


 
05-12-2016, 08:12 AM   #1
scl
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Long term remission vs Cure

I was diagnosed with Crohn's a few years ago after having symptoms for 30 years. My main symptoms were chronic diarrhea and occasionally urgency with cramping.

I had a bowel resection (9 cm) with no other thickening, strictures, or damage found. I was not put on any medication as the surgeon and doctors felt I had managed it well on my own.

I felt fine following surgery but continued to have chronic diarrhea. I accepted that as I was used to it and it didn't really cause me any ill effects. It had been my norm for over 30 years. When I say my diarrhea was chronic, I mean I NEVER had a solid stool.

A year ago, I met a new neighbor who had various health issues. She was considering a vegan diet after watching Forks Over Knives, but her illness prevented her from shopping and cooking most days. I volunteered to shop and cook for her and join her in her vegan diet.

I was a bit concerned since I had been told to avoid high fiber, and the recipes my neighbor picked out were packed with fiber.

Within a couple of days on the vegan diet I had my first solid stool in decades, and it has continued since. All my blood tests are normal, my colonoscopy was clean, even around the anastomosis site.

So.....I have no signs or symptoms of the disease for over a year. At what point would you consider someone cured?
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Diagnosed: 2011 (age 53, 30 years of chronic diarrhea)
Surgery: bowel resection 11/2011
Previous meds: none
Currently on: No medication
Supplements: probiotic, bone health supplement, Vitamin K2, Vitamin D
05-12-2016, 09:27 AM   #2
ronroush7
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I would say you might be in remission. That is great. There is no cure for IBD I hope you stay that way for a long time
05-12-2016, 09:53 AM   #3
scl
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At this point I agree I am in remission. But if all tests remain normal and I am symptom free, I will consider myself cured. I believe diet plays a far greater role in this disease than most doctors realize.
05-12-2016, 10:43 AM   #4
Scipio
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The main reasons to avoid high fiber in Crohn's is if it's a trigger food for you or if you have a stricture or other scarring and damage that puts you at risk for a bowel blockage. If neither of those apply then there may be no need to avoid high fiber. I've never had to avoid fiber. Perhaps you previously avoided it needlessly, and now the vegan diet has helped by finally providing some needed fiber.

Good luck with remaining in remission.
05-12-2016, 11:27 AM   #5
tots
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I was in remission for 9 years. I still have/had trigger foods and spices.

Now I have been in a flare for 6 years.

remission is a beautiful thing.


Lauren
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05-12-2016, 11:28 AM   #6
ronroush7
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I was in remission for 9 years. I still have/had trigger foods and spices.

Now I have been in a flare for 6 years.

remission is a beautiful thing.


Lauren
Yes

05-12-2016, 11:47 AM   #7
Lisa
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I too have been in remission (not on any medications) in the past for years.....unfortunately, each period of remission for me became shorter and shorter and my disease progressed and became more severe. Now, do keep in mind that when I was initially diagnosed 30+ years ago, it was accepted to take medications until remission was achieved then stop.....until a flare occurred.....
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
05-12-2016, 12:03 PM   #8
wildbill_52280
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intestinal bacteria ferment dietary fiber to create healthful compounds which benefits digestive system. low fiber diet has been shown to be a risk factor to developing IBD. It's not surprising this has helped you at all. i find rolled oats and well cooked beans(until they soft as mashed potatoes) to be the absolute best sources of fiber and contribute to large formed moist stools.
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http://www.crohnsforum.com/showthread.php?t=52400

Last edited by wildbill_52280; 05-13-2016 at 09:32 AM.
05-12-2016, 12:22 PM   #9
Ihurt
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I have not been diagnosed with Crohns, but I am having all sorts of issues. I am also looking for a different GI doctor to get another opinion. One thing I can say is that No one can say there is No cure for any disease when they do not even know the cause themselves. I have a disease called Interstitial cystitis. There also is supposedly No cure for it. It is similar to Crohns except it is in the bladder and causes ulcers and severe inflammation in the bladder. I have had this disease for the last 11 years. I have a friend who also had it. She is cured! She has not had any symptoms of IC in the last 5 and half years. She follows a very strict diet ( similar to the SCD diet). I also think with these illnesses, the cause can be different in each individual. So for example, if one person's Crohn's is caused by a pathogenic bacteria and they are able to eradicate that bacteria their Crohn's can possibly be cured. Or if a person's Crohn's is caused by a severe hidden food allergy and they fix that then they are cured. I think it all depends on the cause. Also some believe these chronic illnesses are due to a malfunction in the immune system itself. If that is corrected then there could be the potential for a cure in any illness. Sadly not everyone gets cured because the body is extremely complex and it is not easy to figure it all out all the time. So basically in order for someone to classify any disease as having "no" cure, well they would have to know the cause to prove there is no actual cure out there.
05-13-2016, 01:58 AM   #10
scl
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My thoughts exactly!

As far as flares and remissions, my Crohn's was always constant. No periods of intense symptoms, just diarrhea every day.

I always have plenty of energy and was a long distance runner and triathlete for years. I never missed work or avoided social activities.

Since my bowel resection, all my tests have been normal. With the change to a vegan diet, I feel cured of my disease.
05-13-2016, 08:39 AM   #11
eleanor_rigby
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It is my understanding that for something to be classed as 'cured' then you are free from the disease after discontinuing treatment. Whereas you stay in remission by continuing a treatment. Bowel resections also put many people in remission for several years but it is not a cure because after several years the disease often returns.

If you are following a vegan diet and this keeps the disease inactive, but if you then stop the vegan diet and eat meat etc and the disease returns then you were never cured.
__________________


2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
05-13-2016, 10:24 AM   #12
scl
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But what is my diarrhea is not a result of Crohn's but bile salt malabsorption from my resection?
05-13-2016, 10:47 AM   #13
ronroush7
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But what is my diarrhea is not a result of Crohn's but bile salt malabsorption from my resection?
Have you contacted your doctor?

05-13-2016, 11:24 AM   #14
Ihurt
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I think some people may have food "allergies" or sensitivities and when they consume these foods it can cause inflammation anywhere in the body. If they avoid the trigger foods then the disease goes away. Kind of like with a person who has Celiac disease. They do not have the enzyme required to break down gluten so when they ingest it, it causes massive damage to the small bowel. When they give up Gluten the disease goes away and will only emerge if that person starts consuming Gluten again.

I also honestly think there is more than one illness out there that can cause intestinal inflammation. My son's best friend was diagnosed with Crohn's disease when he was 16 years old. I remember how he would have to run to to the toilet all the time. He told me it was so bad in high school that he literally would not eat anything at all all day until he got home so he would not have to run to the toilet. He finally got diagnosed. They gave him I believe steroids and Asacol. This got him better. He is 24 going on 25 right now and has not been on any medications for years and has no symptoms at all. I mean he drinks alcohol and does not eat the best diet and still has no issues at all. I just wonder if he even had Crohn's to begin with, maybe it was something else. That or he has a really good immune system that is keeping it in check.

I think everyone is different and is going to respond differently to illness. Some do get cured. Like I said, my friend who definitely had IC( Interstitial Cystitis) in which there is no cure supposedly has been cured of the disease for the last 5 years or so. Yet I have had the illness since 2005 and still battle with it. It is all about the immune system in how any disease state will manifest in any individual.






It is my understanding that for something to be classed as 'cured' then you are free from the disease after discontinuing treatment. Whereas you stay in remission by continuing a treatment. Bowel resections also put many people in remission for several years but it is not a cure because after several years the disease often returns.

If you are following a vegan diet and this keeps the disease inactive, but if you then stop the vegan diet and eat meat etc and the disease returns then you were never cured.
05-13-2016, 11:45 AM   #15
eleanor_rigby
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But what is my diarrhea is not a result of Crohn's but bile salt malabsorption from my resection?
I would say that is a separate issue unrelated to whether or not your Crohn's is in remission/cured.

I have a friend who also had it. She is cured! She has not had any symptoms of IC in the last 5 and half years. She follows a very strict diet ( similar to the SCD diet).
In my view then your friend would be cured if she could come off this SCD diet and not have any further issues with IC. I would say this diet is keeping her "in remission", and if she changed her diet and had problems again then she was never cured, but if she changed her diet and still continued to have no problems then she could consider herself "cured".

Same with coeliac disease. If people avoid gluten and have no further symptoms, they are not cured of coeliacs disease as the underlying problem is still there. If they ate gluten again they would start having problems again.

This is just my view... and it is difficult really because Crohn's can be in remission for decades and then out of the blue start causing inflammation/damage.
05-13-2016, 12:05 PM   #16
scl
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Have you contacted your doctor?
Not about my vegan diet. But I have discussed the ongoing diarrhea with her. She was the one that suggested my diarrhea was a result of the resection. Questran would eliminate it, but I hated taking it.
05-13-2016, 12:13 PM   #17
ronroush7
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I hope you get better soon. Is there an alternative to Questran?

05-13-2016, 12:54 PM   #18
scl
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The conversation I had with my doctor was a couple of years ago.

I don't need Questran any longer as I have no diarrhea or any other symptom or evidence of having Crohn's.
05-13-2016, 05:30 PM   #19
Clash
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Many people achieve long term remission with surgery. Others have the disease return rather quickly.

If the diarrhea was present before your surgery it could be due to stricturing of the bowel, active disease etc. After surgery, many GIs will inform you that it may take some time before bowel movements become normal.

I agree with the above poster, a cure would be if you stopped treatment, be it meds, diet etc and the disease did not return proved out by lab work, scopes w/ biopsies, imaging etc not by symptoms. My son has been asymptomatic for quite sometime yet required surgery 2 years ago and the disease is active now.

I wish you a long, happy, remission.
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Clash
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C age 19
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05-13-2016, 06:02 PM   #20
Lam123
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Clash, how come your son needed treatment but had no symptoms?
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Crohns for 26 years
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05-13-2016, 07:08 PM   #21
Clash
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Even though he had no outward symptoms, there was an area that was severely ulcerative, fissured and narrowed which required surgery.

After surgery the CR surgeon described it as hamburger meat and was both surprised he wasn't in agonizing pain or that perforation had not occurred. This area had been an area of simmering inflammation for quite a long time. He had been on remicade and mtx for 2+ years before surgery.

Six months after surgery and 3months after starting humira with mtx his scopes were visually clean but biopsies showed active inflammation at anastomosis and other areas that had previously not had active disease.

A scope 6 months after that showed active inflammation from anastomosis site and throughout colon. He had only had active disease in the terminal ileum before surgery.

His disease progression is a perfect example of why the standard isn't treat to symptom remission. Even without outward symptoms the disease can be causing severe damage.
05-13-2016, 07:20 PM   #22
Lam123
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Clash, ok, this is very interesting. I find it very helpful reading everyone's experiences in order to understand this disease. Or atleast attempt to understand it. LOL!
05-14-2016, 12:30 PM   #23
worriedboy
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Even though he had no outward symptoms, there was an area that was severely ulcerative, fissured and narrowed which required surgery.

After surgery the CR surgeon described it as hamburger meat and was both surprised he wasn't in agonizing pain or that perforation had not occurred. This area had been an area of simmering inflammation for quite a long time. He had been on remicade and mtx for 2+ years before surgery.

Six months after surgery and 3months after starting humira with mtx his scopes were visually clean but biopsies showed active inflammation at anastomosis and other areas that had previously not had active disease.

A scope 6 months after that showed active inflammation from anastomosis site and throughout colon. He had only had active disease in the terminal ileum before surgery.

His disease progression is a perfect example of why the standard isn't treat to symptom remission. Even without outward symptoms the disease can be causing severe damage.

Do they relate the new effected areas to the fact that he had the surgery ?
05-14-2016, 03:18 PM   #24
Jennifer
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I'm glad to hear that you're in remission scl. After my resection I also went into remission and have been since 1999 (I have always been on medication since my resection so I can stay in remission). A cure would mean that there's no chance of the disease coming back but with remission it's possible for the disease to become active again but there's no set time for when that may happen. I hope you have a very long remission as well.

Before my resection I also had to avoid fiber but since my symptoms returned to normal after my surgery I have been able to eat salads, fruits and vegetables without any problems. Over the years the scarring from my resection has become more narrow which is common with scars as they shrink over time so sometimes I do have to be mindful of what I eat because I do have a stricture and adhesions from the surgery which can cause partial obstructions from time to time (a few years ago I had a full obstruction but it cleared without needing surgery after a 3 day hospital stay on bowel rest). You likely won't have to deal with this for quite some time (hopefully never) and hopefully don't have any adhesions.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-14-2016, 04:21 PM   #25
Clash
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worriedboy, noone thinks his surgery was the reason for his CD being active. Surgery is not curative. Studies show numbers as high as 60% of disease returning especially at anastomosis site. He required surgery due to the area being significantly inflamed and fear of perforation was high.
05-14-2016, 08:31 PM   #26
scl
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I do have to be mindful of what I eat because I do have a stricture and adhesions

How are adhesions diagnosed? Were the strictures found by CT scan?

Thanks in advance.
05-14-2016, 11:09 PM   #27
Jennifer
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How are adhesions diagnosed? Were the strictures found by CT scan?

Thanks in advance.
Adhesions can't really be seen in any imaging tests. They can be found during surgery or in my case they were diagnosed by going in to have a balloon dilation done at my anastomosis site since I had a full obstruction and a few partial obstructions but they found that the anastomosis wasn't narrow enough to need stretching. Meaning that it was likely adhesions from the surgery and prior inflammation creating the scar tissue on the outer layers of my intestine that were likely contributing to the obstructions.

For me only a CT scan and colonoscopy have shown my anastomosis narrowing. An MRI, MRE and small bowel follow through didn't pick it up at all. An endoscope can also see the anastomosis (via colonoscopy, upper endoscopy or a double balloon endoscopy depending on where your anastomosis is).
05-15-2016, 04:48 AM   #28
scl
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I am humbled by the suffering I've read in these posts.

It seems my disease has been very atypical. I had chronic diarrhea for 30 years. No fatique, no pain, no flares. It was a blockage that led to the diagnosis of Crohn's. In my consultation with my surgeon he told me he expected to find widespread damage since I had the disease for so long and had never taken medication. My illness never affected my lifestyle.

Following the surgery to remove 9 cm, my surgeon was amazed he found no other thickening, strictures, or any sign of the disease. He recommended no medication following the resection and all tests have been normal since. Both my GI doc and surgeon say have no signs of the disease for the past several years. I am grateful, but it honestly seems a bit unfair. I hope that greater understanding of this disease leads to better treatment and even more important what causes the disease and how it can be cured for all.

Thank you for sharing your stories.
05-16-2016, 12:24 AM   #29
Jennifer
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I'm glad that you've had very few symptoms. It's not as common to be asymptomatic (based on the posts I've read on the forum) but I have heard many other people on the forum like you who have had very few symptoms as well and seemed to mainly be diagnosed after some other procedure or like in your case surgery. While in remission it's good to have routine tests/scopes done every 4-5 years just to make sure that everything is still doing ok (especially since you're known to be asymptomatic) and to at least screen for colon cancer which people with IBD are at a higher risk of getting. During a flare tests are done much more often.
05-16-2016, 12:50 AM   #30
scl
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Thanks Jennifer. I will continue to have tests to make sure I'm not ignoring something potentially harmful.
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