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Crohn's Disease Forum » Your Story » Newly Diagnosed Crohn's remission Already???


01-09-2013, 04:34 PM   #1
Sarah50
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Newly Diagnosed Crohn's remission Already???

Hello!

I had a colonoscopy a year ago just because I'm 50 and you're supposed to have one. Afterwards, my gastro doctor said I had a lesion on my small intestine that looks like what people with Crohn's disease has. I had no symptoms so my doctor said there is nothing to do.

Fast forward to this past summer I noticed I was getting very mild stomach aches during the day that didn't last long. Then in September I went to my doctor to get my blood pressure pills refilled/check up and a routine blood test showed I was anemic. My doctor recommended iron pills. In October, I started getting bad stomach aches in my lower right abdomen that would last hours, and sometimes all day. Some days I also had back aches and was cold a lot. I also got nauseous and threw up several times after eating. I lost my appetite, couldn’t eat much at each meal and started losing weight. I had night sweats many nights. I was tired and felt fatigued most of the time. I couldn’t go out on the weekends or the evenings during the week and struggled at work, calling in sick several times. I knew something was wrong. I went to my gyno to rule out ovarian cysts or cancer since I had pain in what felt like my right ovary area. I also went to urgent care one day because I thought maybe I had a urinary infection.

I googled my symptoms and crohn's disease was one of the illnesses that showed up. Also, iron pills can give you stomach aches and nausea. I went to my doctor at the beginning of November and she told me to stop taking the iron pills for a while, we would eliminate that first. But within days after my appointment, I had a very bad stomach ache at night where I thought I might need to go to the ER. I called my doctor the next morning, crying, telling them I KNEW something was terribly wrong with me. The doctor ordered an ultrasound. I had to drink 32 oz of water and not use the bathroom. While the tech was performing the ultrasound, my lower right abdomen hurt so bad, I was crying out in pain, thinking something inside was going to burst! After I was allowed to urinate, the pain subsided. The doctor's office called the next day saying they found nothing so let's wait and see. I started crying and told them about the excruciating pain and that I KNEW something was terribly wrong with me so my doctor referred me to the gastro doctor. I saw him, told him about my symptoms and said it looks like crohn's disease. He ordered an upper and lower barium x-ray and a blood test and I got that scheduled right away. After the barium x-ray, the radiologist doctor asked if I knew of anything going on. I told him about the colonoscopy a year ago and what the gastro doctor said. He told me I definitely had crohn's disease with some stricturing of the small intestine. My gastro doctor recommended a low residue/low fiber diet, gave me a referral to a dietician and put me on Asacol.

I googled low residue diet and started following it, for the most part. But I still had stomach aches most days. (I took pain pills off and on through these couple of months of pain.) Finally the dietician called to make my appointment which ended up being a month after my diagnosis of crohn’s disease.

When I met with the dietician, she told me about things I was still eating that was probably causing the problems, that I didn't realize, like yogurt with fruit, tomato sauce, possibly milk (lactose), peach preserves, salad, etc. I finally got it - NOTHING with skin, seeds, nuts and even food that leaves "residue" in the intestines. The low fiber/low residue diet had to be followed strictly to slow down the intestines. I followed everything to a T (including switching to lactose-free milk just in case) after that appointment (Dec 21) and started feeling better immediately! All of the symptoms disappeared within days of following that special diet up through now and I couldn't be happier!!! I feel pretty "normal" again and am very grateful for that! I have read quite a bit on this forum for the past month and see how bad crohn's/IBD can be for many people!! How awful!!!!!!!!!!

My question is - have all of you that still have problems tried the "low residue/low fiber diet" faithfully??? I assume the reason I'm feeling better is only because I'm on ASACOL and following the diet 100%. But, I keep reading that this disease is different for everyone so maybe that diet doesn't work for everyone? I don't know.... just very curious about it.

Another question, is it possible that I will be able to eat some of the foods again or will I always have to be on a low residue/low fiber diet? I want to wait another month or so before trying some food not on it to see if I can tolerate it. Or will that put me back into a flare?

This forum has lots of great information and I look forward to sharing and supporting all of you fellow crohn's/IBD people.

Last edited by Sarah50; 01-09-2013 at 06:07 PM.
01-09-2013, 05:00 PM   #2
Angrybird
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Hello and welcome to the forum

I am pleased to hear that the tum is settling for you, I myself have tried a low residue/low fibre diet but unfortunately flared on this. Even though I am on the meds I still avoid skins,nuts and seeds as they can definetly aggrivate the bowel. The Asacol could also now be in your system and contributing to how well you are now feeling, if you do decide to try some foods again I would suggest that you keep a food diary so you can note down anything that upsets your tum. Are you due to see the dietician again? They can advise you on foods groups to try reintroducing to help pinpoint problem areas.

Wishing you all the best.

AB
xx
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01-09-2013, 05:13 PM   #3
Sarah50
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Hello AB,

Thank you for the welcome! Ah, so that's how crohn's/IBD is - the low residue/low fiber diet doesn't work for everyone. I thought that must be so but haven't seen many posts of people discussing that diet, so wasn't sure.

Thanks for the advise of doing a food diary if/when I start trying 'regular' food - good idea and will definitely do it! I have a follow up appointment with the dietician on Feb 1 so was going to wait to talk to her before adding anything to my diet. After going through that kind of pain - it leaves you very leary to try any food except what's recommended! I kind of got the impression from the dietician that I would mostly need to follow this diet for lifetime because of the "stricturing" .... but am not sure. That makes me worry about not eating lots of healthy choices of fruits and vegies!!! Hmm.... I need to do a lot more research and reading here!
01-09-2013, 05:50 PM   #4
Angrybird
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With regards to the stricturing do you know whether this is down to scarring or inflammation?
01-09-2013, 06:04 PM   #5
Sarah50
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I don't know and wondered the same. Since I just started having symptoms of crohn's last October, I'm assuming it was from inflammation. I don't know if the doctor will be able to tell or know without a colonoscopy??? I'll ask at my next appointment with the gastro doctor - Jan 23.
01-10-2013, 02:07 AM   #6
Angrybird
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Please keep us updated on how you get on.
01-10-2013, 04:09 AM   #7
wildbill_52280
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sound similar to what is called the specific carbohydrate diet. consuming large amounts of yogurt daily is key as well as low disaccharide diet lactose and sucrose, and only consuming select starches. you should by the book though as well to understand it in depth.

your case is probably mild so thats why it works so well for you.

good for you!! thats great!
01-10-2013, 01:22 PM   #8
Sarah50
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Thanks, wildbill, I appreciate the feedback and I'll get the book! The idea of lots of yohurt makes sense because ot the 'good bacteria' needed in the intestines. I'm doing that as well as taking Probiotics. I am definitely curious as to what I might be able to eat/include with the low residue diet and be "ok" and not put myself into a flare! So thank you!
01-10-2013, 01:42 PM   #9
Astra
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Hiya Sarah
and welcome

I use this as a rough guide and I nearly know it off by heart!http://www.hhsc.ca/documents/Patient...tFoods-trh.pdf

good luck xxx
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01-10-2013, 01:53 PM   #10
Sarah50
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Thanks, Astra, I appreciate the list. I wish I could find seedless/skinless tomatoes in a can!! They have skinless but don't think they are seedless. Dang!
01-10-2013, 06:20 PM   #11
Sarah50
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Since I have "stricturing of the small bowel", I googled it and came across the same low residue diet - it seems it's recommended for those of us with stricturing Crohn's. After reading about others with stricturing, maybe this diet, along with the medication, will help prevent me from needing surgery? Or prolong the time until I might need surgery? These are questions I will ask my gastro doctor at my next appointment, which is my first appointment after being on the diet and medication since being diagnosed with crohn's. Here's what the article said along with the link...

"Advice for managing your diet with a stricture
If you have a narrowing or stricture in your small bowel you can have symptoms of bloating, feeling sick, poor appetite or pain. You can help these symptoms by changing your diet to avoid foods that are difficult to digest and by choosing foods that pass through the narrowing more easily.

Dietary fibre and residue are the parts of food which are not fully digested but continue to pass down the gut, through the small intestine, and into the large bowel. A strict low fibre diet is not usually required, but indigestible foods containing large amounts or ‘lumps’ of fibre that pass through the intestine unchanged should be avoided."

http://www.cuh.org.uk/resources/pdf/..._stricture.pdf
02-05-2013, 04:24 PM   #12
wildbill_52280
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Since I have "stricturing of the small bowel", I googled it and came across the same low residue diet - it seems it's recommended for those of us with stricturing Crohn's. After reading about others with stricturing, maybe this diet, along with the medication, will help prevent me from needing surgery? Or prolong the time until I might need surgery? These are questions I will ask my gastro doctor at my next appointment, which is my first appointment after being on the diet and medication since being diagnosed with crohn's. Here's what the article said along with the link...

"Advice for managing your diet with a stricture
If you have a narrowing or stricture in your small bowel you can have symptoms of bloating, feeling sick, poor appetite or pain. You can help these symptoms by changing your diet to avoid foods that are difficult to digest and by choosing foods that pass through the narrowing more easily.

Dietary fibre and residue are the parts of food which are not fully digested but continue to pass down the gut, through the small intestine, and into the large bowel. A strict low fibre diet is not usually required, but indigestible foods containing large amounts or ‘lumps’ of fibre that pass through the intestine unchanged should be avoided."

http://www.cuh.org.uk/resources/pdf/..._stricture.pdf
hi sara,

here is some more information if you are interested, soluble fiber is something you want, because the good bacteria turn this into acids that lower intestinal ph to inhibit pathogens, among other benefical effects. these acids are called short chain fatty acids specifically: acetic, propionic and butyric, and are also anti-inflammatory. the term "low residue" is mainly for people who are about to undergo a colonoscopy, so that the GI can see the surface of your intestine, and the laxative will be able to remove most particles that have remained undigested. but again a similar concept does work for crohns, more easily digested foods that are more fully absorbed, will not irritate your condition as much, but this does not apply to soluble fiber, there have been studies where psyllium fiber has been able to induce remission in some patients.
02-06-2013, 01:01 PM   #13
Sarah50
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hi sara,

here is some more information if you are interested, soluble fiber is something you want, because the good bacteria turn this into acids that lower intestinal ph to inhibit pathogens, among other benefical effects. these acids are called short chain fatty acids specifically: acetic, propionic and butyric, and are also anti-inflammatory. the term "low residue" is mainly for people who are about to undergo a colonoscopy, so that the GI can see the surface of your intestine, and the laxative will be able to remove most particles that have remained undigested. but again a similar concept does work for crohns, more easily digested foods that are more fully absorbed, will not irritate your condition as much, but this does not apply to soluble fiber, there have been studies where psyllium fiber has been able to induce remission in some patients.
Hi WildBill - thank you for the information! It's appreciated.

Here's what I found and have questions that maybe you can answer?

"Soluble fiber. This type of fiber dissolves in water to form a gel-like material. It can help lower blood cholesterol and glucose levels. Soluble fiber is found in oats, peas, beans, apples, citrus fruits, carrots, barley and psyllium."

The dietician told me not to eat any raw fruits except bananas (and later melons). She also told me not to eat peas, beans, grains (except white/low fiber).

That would leave me with carrots - only suppose to eat them cooked, oats and psyllium. Do you think that would be enough soluble fiber? How much psyllium are you supposed to eat? I've never had it.

Although, I was in 'remission' meaning all of my symptoms went away, since this past Sunday, I've had lots of pain and sometimes sharp pains in my lower right abdomen (crohn's is in terminal ileum area). So now I'm not adding anything new and mostly on liquids until these pains go away. I think it's from stress. Ugh.

Anyway, again, thanks again for your information!
02-15-2013, 10:32 PM   #14
wildbill_52280
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Hi WildBill - thank you for the information! It's appreciated.

Here's what I found and have questions that maybe you can answer?

"Soluble fiber. This type of fiber dissolves in water to form a gel-like material. It can help lower blood cholesterol and glucose levels. Soluble fiber is found in oats, peas, beans, apples, citrus fruits, carrots, barley and psyllium."

The dietician told me not to eat any raw fruits except bananas (and later melons). She also told me not to eat peas, beans, grains (except white/low fiber).

That would leave me with carrots - only suppose to eat them cooked, oats and psyllium. Do you think that would be enough soluble fiber? How much psyllium are you supposed to eat? I've never had it.

Although, I was in 'remission' meaning all of my symptoms went away, since this past Sunday, I've had lots of pain and sometimes sharp pains in my lower right abdomen (crohn's is in terminal ileum area). So now I'm not adding anything new and mostly on liquids until these pains go away. I think it's from stress. Ugh.

Anyway, again, thanks again for your information!
sorry it takes me so long to get back, you can take anywhere from 4-20 grams of psyllium a day, i recall some studies use 16 grams which brought some people into a remission.

as for staying away from grains, yes i find oats are well tolerated 300-600 calories perday, and i do not eat commercially produced bread with yeast. This is probably too much work for most people but i make unleavened wheat products, and the strange thing is the only brand i can tolerate is Gold medal whole wheat flour, i switched to a generic brand and felt sick, then i tried king arthur brand and started having bloating and looser stools, you may not react the same to these foods like i do, but this is just a heads up.

generally corn and barley tends to give some problems.

i only eat homemade refried beans, i can tolerate about one cup per day.

bananas contain alot of sucrose, if you are following the specific carbohydrate/low lactose and sucrose to help with D symptoms, i would avoid babanas. you can get diet info from nutrition data. com sometimes they dont list all details on foods and sometimes its inaccurate, but it is still helpful.

i think peas actually contain a decent amount of sucrose as well. prunes/prune juice contain very little sucrose, but not too tasty. most fruits you will find have quite a bit of sucrose and stimulate diarhea, i would say lower fruit intake but do not avoid fruit its so healthy. grapes are pretty low in sucrose.
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