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06-24-2013, 08:40 AM   #1
^mc
 
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Hopeful

So I have recently self-diagnosed myself with some form of IBD, probably Crohns', but not 100% sure. I'm hoping that I will be able to glean info and wisdom from this forum. I began experiencing severe diarrhea about 10 years ago, and have been afraid to go to the Doctor because I don't have insurance. My husband of three years was concerned about me and he did some research, suggested that maybe I had IBD, and as I began to read up on Crohns and other similar illnesses, it definitely struck home. The intense urges to go to the bathroom, sudden urges, like omg I may not make it urges.....sometimes not making it. The shame and fear that surrounded me daily. I thought that I had some form of cancer, but then I thought, no way because I would be dead by now. Fecal incontinence, not being able to eat anything without having a bathroom right there. My whole life, all of my thoughts of what I could do and where I could go were determined by how quickly could I get to a bathroom. I have begun the slow process of trying to figure out what I can and cannot eat. Dicey at best. So I have discovered that all the things that I thought were good for me were really hurting me instead. Green leafy veggies, raw veggies, whole grains, lowfat dairy....I discovered that I am lactose intolerant, and have quickly found that dairy equals quick and explosive stools. Oils and butter, margarines, no good. High fiber foods, no good. The only thing that I seem to be able to eat so far is pasta with marinara sauce. I began keeping a food journal, but I am so confused because unless I single one food out and eat only that food, how do I know what is what?????? I realize that it will take a lot of time and effort to make some sense of this, any input will be gratefully received.
06-24-2013, 09:21 PM   #2
raechel
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I am sorry to hear that you are having such a rough time. Many of your symptoms sound very familiar to me, as a Crohns sufferer... And i know how confusing and down right lousy it can all be. I also know doctors visits without insurance can be very costly, but it really is important if you are experiencing these severe symptoms you do anything you can to see someone and get an official diagnosis. If you call your local health department they may be able to point you in the right direction for low cost or income based care if you cannot afford it. Getting a proper diagnosis is the first step to coming up with a plan to hopefully feel better quickly. Having said that, everything you listed as a food trigger also effects me. I have found low fiber cereals with soy milk, (I ESP. Like chex), potatoes, pasta with marinara, different forms of bread (dairy free), and potatoes to be my best shot at a pain free meal. One of the many things i have learned from this forum is everyones food triggers are different, though. I hope you get some answers and feel better soon. Sorry I may not have been much help. Raechel
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
06-25-2013, 10:42 AM   #3
^mc
 
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Your response is more helpful than you can know. I really do appreciate your input. Most especially the knowing that I am not alone with this helps a great deal.
06-26-2013, 01:37 PM   #4
David
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Hi there and welcome to the community. I see you're in Arizona. I know they have some free insurance for people that cannot afford it. Have you looked into that at all?

I ask because if you do indeed have IBD it needs to be properly treated. Untreated IBD is a ticking time bomb.

All my best to you.
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06-27-2013, 10:20 AM   #5
^mc
 
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Hi David,
In Arizona we do have AHCCCS, which is for folks who do not have a income greater than around $1000 per month. I am exceeding that income each month, so it is that stuck in between place. I can't afford private insurance on what I currently make, my employer doesn't offer insurance, I make too much for state insurance, and paying cash for everything would be problematic. However, I am still hopeful that I will be able to at least begin to understand what is wrong and make some positive changes. I have learned a lot by reading these threads. I am currently considering the elemental diet described by some of your members as a starting point to allow my body to take a break and possibly begin to heal. I have also been reading up about various natural remedies that might be helpful. I have already begun to see some positive changes just from eliminating dairy from my diet. I still am experiencing severe diarrhea, but it is much better than before, and there is less pain in my gut. One weird thing did happen the other night though, I woke up absolutely freezing for no reason. Like teeth chattering cold. I had to turn the a/c off, put flannel pj's on, socks on my feet and then have my husband wrap around me. Finally I got warm. That is the first time that has ever happened. I didn't have a fever, and I was fine the next day, really odd.
06-27-2013, 11:01 AM   #6
Crohnzie Girl
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Hi ^mc! I have Crohns and you know what? I get that sometimes too. Usually at night after I've had an exhausting day. But I would get so cold I'd have on like three blankets and my son would rub my back help keep me warm until I feel asleep. Next morng I'd be fine and off to work. Now. I never considered this to be part of my Crohn's. Hmmm Maybe it is... my next GI visit I'll be sure to mention it.
06-27-2013, 11:08 AM   #7
Crohnzie Girl
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Oh and I must add, diet makes a difference!! I understand that every IBD is different and not one is the same as the other. But one thing for sure. Once you figure out what foods u can tolerate and which to avoid, makes a HUGE difference for the better. We all kno no diet cures Crohns or UC but it can drastically cut down on flares and be much less in pain. I just learned this myself after years of believing foods don't make a difference only meds... Something to think about!
06-30-2013, 10:37 AM   #8
David
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That's rough. My heart goes out to you
06-30-2013, 01:23 PM   #9
723crossroads
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Look on the diet and supplement threads on the main forum page. Look up SCD diet and also many use a Paleo diet. When you are flaring, like you seem to be, Low Residue diet is best. Check them out, they really do help. Blessings to you!
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