well..i am new to this site.im a 22 year old female. and was diagnosed with Crohn's at 17. had my first bowel obstruction when i was 12, and had it partially removed when i was 14.i ate like everyone else tried to live like everyone else until it bit me in the ass as 20 and it went from moderate to chronic..now im kind of not sure what to do.i have a reg doc. but no insurance.i am in and out of the hospital. i have no idea what to eat what will make me feel better..i have a rare skin disorder called epidermylysis bulosa.which is sisters with Crohn's..if one thing isnt bad the the other is.i dunno what to do. anyone with advice i would really appreciate it. :ack: none of my friends or family members have either of my diseases. so i dont really have anyone that understands.i hoping this site is a great way for me to support ppl and gain support myself.
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Any advice is better than none :)
- Thread starter raven
- Start date
Sorry about the suffering you've gone through. You can find plenty of support and great information on this forum.
Are you on any medication for Crohn's? That, along with finding a diet that works for you is key. I know many people on here recommend the Paleo diet or the SCD diet. These look very healthy and I'm just not ready to give up bread, pasta and 'treats' - cookies, ice cream, etc. Since I have a stricture in my small intestines, my doctor recommended the low residue diet and I've done very well on it. After being on my medication *Asacol) and doing the low res diet for 6 weeks, ALL of my Crohn's symptoms went away! I had bad stomach aches constantly before. I KNOW this diet has helped because when I've tried to eat something that I know I shouldn't, the stomach aches come back. Anyway, check out what everyone recommends that helped them go into remission and see which one makes sense for you. I'm going to keep following this diet because it's not overly restrictive and it definitely works. I'll post some links below for you to check out this diet. Best of luck to you!!
http://uvahealth.com/services/digestive-health/images-and-docs/Low_fiber_Low_residue_diet_3.pdf
This diet is also recommended during a flare:
"When someone suffers from chronic inflammatory bowel diseases, such as Crohn’s or ulcerative colitis, a normal diet is usually used, while a low fibre foods diet is needed during a flare-up. Low fibre foods during a flare may reduce abdominal pain, improving dietary tolerance. Once again, raw fruits, vegetables and whole grains should not be ingested during this time."
http://www.fibrefoods.net/low-fibre-foods
Are you on any medication for Crohn's? That, along with finding a diet that works for you is key. I know many people on here recommend the Paleo diet or the SCD diet. These look very healthy and I'm just not ready to give up bread, pasta and 'treats' - cookies, ice cream, etc. Since I have a stricture in my small intestines, my doctor recommended the low residue diet and I've done very well on it. After being on my medication *Asacol) and doing the low res diet for 6 weeks, ALL of my Crohn's symptoms went away! I had bad stomach aches constantly before. I KNOW this diet has helped because when I've tried to eat something that I know I shouldn't, the stomach aches come back. Anyway, check out what everyone recommends that helped them go into remission and see which one makes sense for you. I'm going to keep following this diet because it's not overly restrictive and it definitely works. I'll post some links below for you to check out this diet. Best of luck to you!!
http://uvahealth.com/services/digestive-health/images-and-docs/Low_fiber_Low_residue_diet_3.pdf
This diet is also recommended during a flare:
"When someone suffers from chronic inflammatory bowel diseases, such as Crohn’s or ulcerative colitis, a normal diet is usually used, while a low fibre foods diet is needed during a flare-up. Low fibre foods during a flare may reduce abdominal pain, improving dietary tolerance. Once again, raw fruits, vegetables and whole grains should not be ingested during this time."
http://www.fibrefoods.net/low-fibre-foods
thank you very much for reading my post.im not currently on medications for my Crohn's. i was on pentasa when i had medicade before i turned 21.and it really helped with my flar ups. and they went from once a week to maybe once a month. after i lost my insurance i was no longer able to buy pentasa.i dont think anyone has 1020 a month for any med. :/ im on medicine for the upset stomach and throwing up and all that jass.but they dont help lately at all.i tried humira through the patient assistance program.and i was illergic to it. im kind of at a rock and a hard place for getting a Crohn's med. ive tried alot of the diets listed on here.but they dont seem to work.and im going to give ur's a try.im having flar ups now that last up to two weeks..i am trying to understand how people can be positive with this disease, and im trying to be optimisitic.
Jim (POPS)
Jim (Pops)
- Location
- Antioch, Ca
I know what you are going through. The one thing i would make sure to do is get on some kind of a med for the crohns. Each time you have a flair and it goes away you get scar tissue build up. after alot of flairs without meds you can really get into trouble if the scar tissue gets bad. You could end up needing a resection. Do your self a faver and get treatment before you run into more problums.
You're right, it's hard to be positive when you're not feeling well! I remember when I was sick every day, I thought... oh my God, is this how my life is going to be??? If so, this is the pits!!! That is why I am sooooooo thankful that the meds and diet work. I'm convinced it's more of the diet than anything. Like I said, when I follow it strictly and have NOTHING that's not allowed, I have no symptoms. But when I've eaten something not allowed, like something as simple as celery in tuna salad - the celery definitely gave me a stomach ache the entire next day! Or fruit in yogurt or eating peach preserves instead of jelly. So you really need to follow it strictly to work. No raw fruits except bananas or cantaloupe but no seeds or skin! No raw veggies and only eat the ones on the list. No multi-grain bread or high fiber bread or cereal. I just buy white Italian bread or sour dough, which I love anyway! When I'm flaring bad, I drink more than eat, like protein powder, lactose-free milk and banana to make a protein drink. And milk shakes, just to make it easy on your intestines and give them a break. I also eat small soft food like macaroni and cheese. If you have any questions about that list or about the low res diet, just ask, I'm more than happy to help. I hope you have the same success I've had on this diet!!
Hi Raven and welcome to the forum!
As far as diets go during a flare I also follow the low residue diet. Yet for things like nausea and diarrhea the BRAT (bananas, rice, applesauce and toast) helps. Its not just strictly only those 4 foods but foods that are more starchy in general like potatoes etc. Its much more bland than the low residue diet. For really bad symptoms where bleeding and vomiting might be involved then a liquid diet helps some such as soups, broth, tea (non caffeinated), juice, supplement drinks (there are many different kinds Ensure and Boost do have a lot of sugar, Ensure Clear doesn't have Carrageenan: http://www.crohnsforum.com/wiki/Carrageenan, this thread here has a lot of other diet drink suggestions: http://www.crohnsforum.com/showthread.php?t=47659). If you're going to try a liquid diet then make sure your doctor knows about it.
Let's talk about the Medicaid. I'm assuming you lost it due to age. Are you currently working? Are you trying to get SSI or SSDI for Crohn's? You would automatically qualify for Medicaid if you were considered disabled. If you need information on how to apply for disability here in the US feel free to ask questions. I currently receive SSI and I know that Afidz is working with a lawyer right now to try and get it as well. Not having health insurance is a major problem as you know.
Where are you located? There may be a low income insurance provider in your county. Here were I live if you make under a certain amount of money then you qualify for health coverage which pays for medications and doctor visits including specialists (you need a GI).
Again welcome to the forum and keep us posted on how you're doing.
As far as diets go during a flare I also follow the low residue diet. Yet for things like nausea and diarrhea the BRAT (bananas, rice, applesauce and toast) helps. Its not just strictly only those 4 foods but foods that are more starchy in general like potatoes etc. Its much more bland than the low residue diet. For really bad symptoms where bleeding and vomiting might be involved then a liquid diet helps some such as soups, broth, tea (non caffeinated), juice, supplement drinks (there are many different kinds Ensure and Boost do have a lot of sugar, Ensure Clear doesn't have Carrageenan: http://www.crohnsforum.com/wiki/Carrageenan, this thread here has a lot of other diet drink suggestions: http://www.crohnsforum.com/showthread.php?t=47659). If you're going to try a liquid diet then make sure your doctor knows about it.
Let's talk about the Medicaid. I'm assuming you lost it due to age. Are you currently working? Are you trying to get SSI or SSDI for Crohn's? You would automatically qualify for Medicaid if you were considered disabled. If you need information on how to apply for disability here in the US feel free to ask questions. I currently receive SSI and I know that Afidz is working with a lawyer right now to try and get it as well. Not having health insurance is a major problem as you know.
Where are you located? There may be a low income insurance provider in your county. Here were I live if you make under a certain amount of money then you qualify for health coverage which pays for medications and doctor visits including specialists (you need a GI).
Again welcome to the forum and keep us posted on how you're doing.
I am in Australia and I can't believe how scary the health system is in the USA. It's just awful.
You do really need to get medicated. I just went off my meds for four months and I've come crashing down bad. I'm now worried about scar tissue at the age of 30 and your Crohn's seems worse then mine.
I find a lot of the food discussed above affects me - bananas are a huge problem.
I'm currently doing Michelle Bridges clean eating diet and its amazing. I'm also having two hydrazine ice blocks a day to replace lost vitamins etc.
Good luck...
You do really need to get medicated. I just went off my meds for four months and I've come crashing down bad. I'm now worried about scar tissue at the age of 30 and your Crohn's seems worse then mine.
I find a lot of the food discussed above affects me - bananas are a huge problem.
I'm currently doing Michelle Bridges clean eating diet and its amazing. I'm also having two hydrazine ice blocks a day to replace lost vitamins etc.
Good luck...
thank you to everyone that wrote back to me i REALLY appreciate it. i live in murphy, north carolina.its a very small town.and i just came home from the hospital yesterday morning.my intestine twisted again for the third time and i had surgery again. the area i live in has extremely bad health care and i had been taken to the emergency room 3 times in two months.and they said ur empacted to ur rib cage and sent me home.with no care and said eat FIBER and i did because that what they said to do.i was eating fiber only like bars and metamucil cookies and drinking only water.which finally lead to me having a stomach and bowel infection and still the impaction,and they did the surgery last week.i have went to every place i can trying to get help to get my meds..but no one will help.my local health department does.but because i have to drive 2 hrs to my doctor in asheville to have a GOOD doc..they said oh we cant help u bc ur doc isnt local?? its been like this for 2 years.and ive been almost 2 years with out Crohn's meds.i dont eat bc i get sick..if i eat i get sick.its like what do i do? im glad i finally found a place where i can support others and get support to.thanks everyone
yeah i am ten minutes from georgia and 20 minutes from tennessee.it does make it hard to live in a small town. :heart: but hopefully i will get the help soon.i have lost my last 2 jobs due to being in and out of the hospital,and it doesnt make it any easier living off unemployment with no insurance.i love working.but my health is too bad right now for me to do barely anything.and if its not my Crohn's alone everyday.its my skin disorder epidermylsyis bulosa.which makes it hard for me to wear shoes bc my feet bleed. i was born with no toenails.and recently my fingernails fell off for the last time and haven grown back.so my hands are sensitive.my grandmother has Crohn's and i watched her suffer as i was a child but ubfortunatly she passed away befor i was old enough to ask her for advice. im trying to stay positive.just like everyone else.how bad is your Crohn's?