I have crohns since i was 18 yrs old .... I had a flare in Jan 2011 which resulted with me being hospitalized for 14days and i perferated and had my illiuem and 18 inches of intestion removed....I have been disabiled for last 3 months with a flare where i was told i had to start biological meds...1st i was perscribed Humira which my insurance denined and started cimzia which i have been on for 2 months with no improvements..now im in appeals with my insurance for Humira....in last 3 weeks i have been on entocort and imuram which has stopped bowel movements from 12-15 aday to 7-10....i am so tired of this literially....no one understands that im sick.....i do look normal ...i have some people at work who think i m just working the system...i feel like im all alone and im sick....i hate taking pain pills just to make it...my wife does all she can but im just a burden who cant provide any more....
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Im new and scared
- Thread starter bosoxso41918
- Start date
Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum.
I am sorry to hear that you are having such a rough time of it at the moment
Just know you have come to the right place for lots of helpful info and support - we all 'get it' here and whilst it may feel like it, you are not a burden hun. Out of interest have any dietary changes been mentioned to you at all and if so does this help with symptoms? How long have you been on the Imuran exactly and at what dose? Is this the first time you have been on this? Also since your op have docs ever done any checks in your vitamin levels?
Will be keeping fingers crossed that you can be feeling much better soon.
AB
xx
xx
I am sorry to hear that you are having such a rough time of it at the moment
Just know you have come to the right place for lots of helpful info and support - we all 'get it' here and whilst it may feel like it, you are not a burden hun. Out of interest have any dietary changes been mentioned to you at all and if so does this help with symptoms? How long have you been on the Imuran exactly and at what dose? Is this the first time you have been on this? Also since your op have docs ever done any checks in your vitamin levels?Will be keeping fingers crossed that you can be feeling much better soon.
AB
xx
xx
its 100mgs on imuram and 9mg on the entocort....my doc hasnt said much on diets but i avoid greesy foods and red meat..not much soda if any
Angrybird
Moderator
- Location
- Hertfordshire
Do the docs plan to increase the Imuran dose at all? Did you start this at the same time as that Entocort? You may also find a bland low residue diet will help with symptoms, some others here even go on a liquid only diet with special shakes to help calm the tum down........
not sure....i will be stopping the enocort when Humira injections starts.....hopefully next week...he prescribed imuran because i had no improvements with cimzia with plans that imuran will make Humira work
Angrybird
Moderator
- Location
- Hertfordshire
Ah I see, I do hope you can get the Humira approved. Please keep us updated on how you get on.
I'm so sorry that you are so sick right now, don't worry, you are not alone. I'm new to this forum thing too, but not Crohn's. I've had it for a decade now, and I'm only 16.
Anyway, when I get sick I go on an all-Ensure diet. Ensure is sold at CVC, grocery stores, target, pretty much anywhere. It is a milk protein based shake that is easy to digest for people like us. It really helps a lot; it eliminates all the irritating stuff that is in normal foods, even low-residue things. You can also try baby food. It's not as bad as it sounds if you get the kind that comes in those little pouches like Ella's Kitchen or Gerber Graduates. When I'm not actively flaring, which is not often now-a-days, I eat a low-residue diet. The rule of thumb for that Is all squishy foods that won't scrape up your insides at all when they go through you. Basically my rule is: if you can recognize it on the other end, don't eat it. Going on diets like this has really been my saving grace over the last few years, as my Crohn's is getting worse and worse.
I hope this helps. Hang in there.
Anyway, when I get sick I go on an all-Ensure diet. Ensure is sold at CVC, grocery stores, target, pretty much anywhere. It is a milk protein based shake that is easy to digest for people like us. It really helps a lot; it eliminates all the irritating stuff that is in normal foods, even low-residue things. You can also try baby food. It's not as bad as it sounds if you get the kind that comes in those little pouches like Ella's Kitchen or Gerber Graduates. When I'm not actively flaring, which is not often now-a-days, I eat a low-residue diet. The rule of thumb for that Is all squishy foods that won't scrape up your insides at all when they go through you. Basically my rule is: if you can recognize it on the other end, don't eat it. Going on diets like this has really been my saving grace over the last few years, as my Crohn's is getting worse and worse.
I hope this helps. Hang in there.
i have managed my crohns which affects damn near my entire gi tract fro 3.5 years without drugs.
here are some tips that may help.
-switch from milk to cheese to lower lactose intake.
avoid anything with added sugar and limit you diet to low sugar fruits, but they all have some sucrose so in general you will have some issues with fruit.
-corn, barley, rice contribute to constipation.
-pure psyllium seed husk but not metamucil with added sugar, can help form a solid bowel movement and contribute to healing of the intestinal tract from good bacteria fermenting the fiber to make antibacterial/anti-inflammatory compounds. at certain times during your disease, psyllium may not help any of your symptoms, i believe this is due to accumulating too many bad bacteria, which compete for access to soluble fiber, making it harder for the good bacteria to make the good stuff, so watch out. combining psyllium with coconut oil up to one tablspoon total spread out daily between meals may be the right mix for crohns, where coconut can inhibit the pathogens, allowing only the remaining good bacteria to ferment the psyllium/soluble fiber.
in 2009 i was taking large amounts of psyllium and coconut oil and eating lots of corn, rice, and barley with almost no problmes. Like the typical inexperianced amateur, i prematurely concluded i was cured, and got lazy on the regimen i developed, then i changed it, now im trying to go back to it and it has been difficult to get the same results as now all these starchy foods just constipate me. since i didnt do any of this very scientifically or to the hightest standards, im not sure exactly how i acheived that, so i recently tried going back to psyllium and it only caused me problems, now im trying to work coconut oil back into the diet as i think that was the main variable that was keeping it all together allowing me to not only take the psyllium, but also eat all the corn rice and barley that i cannot digest now.
im not making any promises here, but these are a few ways which i have managed through the years. i have never had surgery and i have 1-2 bowel movement a day for about 3 years, actually longer then 3 yrs, i had my diarrhea under control in about the first 2 months. the worse ive ever got after those first two months was perhaps 3 bms in one day, and thats it.
my diet is based around refried beans, wheat, and oatmeal, my supplement regimen is quite complicated.
im giving myself 6 more months of systematically testing more alternatives. Then, only after i have tried everything else, will i pursue drugs. the only symptoms i deal with is low energy, brain fog, and fluctuating levels if inflammation, which i may actually be able to control soon without drugs.
hope this gives you i bit more hope and shows you you have many more options then just the drugs and surgery. i have read many scientific articles and have taken 3 years of notes documenting every step i took, i am still perfecting my regimen, but these are my own discoveries.
here are some tips that may help.
-switch from milk to cheese to lower lactose intake.
avoid anything with added sugar and limit you diet to low sugar fruits, but they all have some sucrose so in general you will have some issues with fruit.
-corn, barley, rice contribute to constipation.
-pure psyllium seed husk but not metamucil with added sugar, can help form a solid bowel movement and contribute to healing of the intestinal tract from good bacteria fermenting the fiber to make antibacterial/anti-inflammatory compounds. at certain times during your disease, psyllium may not help any of your symptoms, i believe this is due to accumulating too many bad bacteria, which compete for access to soluble fiber, making it harder for the good bacteria to make the good stuff, so watch out. combining psyllium with coconut oil up to one tablspoon total spread out daily between meals may be the right mix for crohns, where coconut can inhibit the pathogens, allowing only the remaining good bacteria to ferment the psyllium/soluble fiber.
in 2009 i was taking large amounts of psyllium and coconut oil and eating lots of corn, rice, and barley with almost no problmes. Like the typical inexperianced amateur, i prematurely concluded i was cured, and got lazy on the regimen i developed, then i changed it, now im trying to go back to it and it has been difficult to get the same results as now all these starchy foods just constipate me. since i didnt do any of this very scientifically or to the hightest standards, im not sure exactly how i acheived that, so i recently tried going back to psyllium and it only caused me problems, now im trying to work coconut oil back into the diet as i think that was the main variable that was keeping it all together allowing me to not only take the psyllium, but also eat all the corn rice and barley that i cannot digest now.
im not making any promises here, but these are a few ways which i have managed through the years. i have never had surgery and i have 1-2 bowel movement a day for about 3 years, actually longer then 3 yrs, i had my diarrhea under control in about the first 2 months. the worse ive ever got after those first two months was perhaps 3 bms in one day, and thats it.
my diet is based around refried beans, wheat, and oatmeal, my supplement regimen is quite complicated.
im giving myself 6 more months of systematically testing more alternatives. Then, only after i have tried everything else, will i pursue drugs. the only symptoms i deal with is low energy, brain fog, and fluctuating levels if inflammation, which i may actually be able to control soon without drugs.
hope this gives you i bit more hope and shows you you have many more options then just the drugs and surgery. i have read many scientific articles and have taken 3 years of notes documenting every step i took, i am still perfecting my regimen, but these are my own discoveries.
Last edited:
David
Co-Founder
- Location
- Naples, Florida
Hi there and welcome to the community. I'm sorry to hear of your ongoing flare.
As I was reading your post I thought to myself, "I wonder if he has been tested for c.diff?" I ask that because with a long hospital stay like that, picking up c.diff is certainly a possibility and could be why you're not responding well to the medications.
Again, welcome to the community!
As I was reading your post I thought to myself, "I wonder if he has been tested for c.diff?" I ask that because with a long hospital stay like that, picking up c.diff is certainly a possibility and could be why you're not responding well to the medications.
Again, welcome to the community!
afidz
Super Moderator
Hello and welcome to the forum. Being sick can be hard on you and everyone around you (especially your significant other) I am sure that you are down on your self for not being able to provide for your family, but you have to take care of yourself before you can take care of others. Concentrate on controlling the disease. As far as your co-workers go, ignore them. Yes you do look normal. But you ARE sick. Unless someone has Crohn's or other IBDs or knows someone with it, they have no idea what its like, and you don't have anything to prove to them. I hope that your insurance approves you for Humira soon, it did wonders for me!
- Location
- USA
Just my opinion,but everything I've ever read,when ur flaring, avoid wheat and fiber and barley etc!!! It made it worse for me. I ate mostly chicken breast that I would just brown a little on both sides, close lid and cook maybe five more min. Nothing spicy at all! No beans either, talk about gas!!
What works for one person, does not work for another. I can't eat fried foods or raw veg as it comes out the same as it went in and aggravates the D. I do cheat once in awhile, but when I eat any sugar or boxed foods with preservatives,Oh Boy!!!! Stay away from that and eat as natural whole foods as u can. No fast foods either... Just my experiences. I do hope u get better soon. Entocort put me in remission in two months!!! I am in remission again they say, after a catscan, but I think they r wrong. I am still having trouble now. Do u get stomach aches alot? Just curious. Keep us posted!:thumleft:
What works for one person, does not work for another. I can't eat fried foods or raw veg as it comes out the same as it went in and aggravates the D. I do cheat once in awhile, but when I eat any sugar or boxed foods with preservatives,Oh Boy!!!! Stay away from that and eat as natural whole foods as u can. No fast foods either... Just my experiences. I do hope u get better soon. Entocort put me in remission in two months!!! I am in remission again they say, after a catscan, but I think they r wrong. I am still having trouble now. Do u get stomach aches alot? Just curious. Keep us posted!:thumleft:
thanks everyone.....David during this last 3 month flare i went to er for pain and they did test me for c-diff and it was negitive...723 crossroads my stomach always hurts and i do pretty much what u have suggested except i have a weekness for raw veggies but i only have in very small moderations...and honestly i havent had problems with those...