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Feeling so incredibly discouraged

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Ulcerative Colitis
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Posted 7/26/2010 5:35 PM (GMT 0)
I hope someone reads this, I know you guys can relate...

I'm only 24, and I've had UC since I was 19. After so many doctors and all of the bullcrap I became indifferent and decided to go untreated for two years. I managed my illness with pain medications. Finally I got fed up, and saw a G.I., I figured he seemed pretty good and decided to go ahead with a colonoscopy that concluded I probably have Chrons instead of UC and that it was my entire intestinal tract involved.

After that depressing news, I agreed to steroids even though I was uncomfortable with the drug. I'm an aspiring model and the idea of gaining a ton of weight, and all the other horrible side effects made me not want to EVER use them.

It was supposedly supposed to work (40mg a day)...and it kind of helped, but my symptoms are still there (10 or 11 bms a day down to 4 or 5) so we're weaning off and he tells me he wants to try Remicade or something called Sub6. I don't feel comfortable taking drugs that are so hard on my body...you could potentially die from Remicade. I asked if I could try Asacol because it worked for me in the past and he says it won't work. I want to take care of this holistically but every doctor I've ever talked to says that's not possible and that's why I gave up on doctors to begin with.

I'm going to start a Gluten free diet today, I do think I have a gluten intolerance and I'm hoping that might make some changes with my illness...Can anybody tell me anything about probiotics and where I can get the good ones?? Can anybody tell me anything that's currently working for them? I'm so scared, by myself in this and I just feel like I'm dying.
Posted 7/26/2010 5:53 PM (GMT 0)
Oh boodydoo, I am very sorry for this situation. I have UC and I noticed a big difference with the probiotic VSL#3. There are a log of other good probiotics out there and this is just one of them, but I have been happy with the help it has given me.

The SCD diet has helped some in this forum. You should try it. I did it for 6 months or so, and I never really felt any different but everyone is different.

You really want to nail down whether this is Chrons or UC. They have different protocols and medical option.

Also, Some of the larger big cities/hospirtals have UC and Chrons centers in hospitals and academic centrs. You many want to try and see a doctor there if that is an option and you want additional medical advice.

Good luck. I hope you feel better.
Posted 7/26/2010 6:08 PM (GMT 0)
Well I can say this, when I eat heavy wheat bran cereal like All Bran for example, everything seems to get worse, so maybe it is the roughage or the wheat fiber that something possibly worth avoiding. Milk and acidy foods aren't the best either.
Sometimes juiced cabbage, canned spinach, juiced carrots has helped in the past.
Just some ideas.
Posted 7/26/2010 6:51 PM (GMT 0)
Remicade works for me. I wish it had been available when I was suffering in my 20's. Instead, I spent almost 25 years relying on prednisone and asacol, and probiotics, and gluten-free...and the naturopathic/holistic approach...and feeling bad a lot and it interfering with my life a lot and making me look awful with moonface and weight gain. Pretty typical experience, years and years of it, with weeks and weeks of flaring every year, at least. You are young like I was, so I encourage you to reconsider.

Remicade isn't killing me, it gave me my life back. If you have Crohns, even surgery won't do that.
I'm hoping Humira will be approved soon, then I won't even have to go in for the infusions.

If you are not ready, try seeing a naturopathic doc. He or she can advise you on the holistic approach, probiotics use, etc.
I'm sorry we are stuck with this exasperating disease. Be strong!
Posted 7/27/2010 2:53 AM (GMT 0)
Boodydoo: I am so sorry! I have been through those rough patches! I definitely dont blame you for not wanting to try Remicade. My MD said he was going to put me on that if my symptoms didnt subside after prednisone. Prednisone didnt really help me so I just havent called my MD back because symptoms arent that bad right now. I refuse to take a bunch of HORRIBLE drugs my whole life. Look in to the SCD diet. Its an amazingly healthy, alternative lifestyle diet that can hopefully give you some relief. I have been on it for just over a week and have noticed improvement. Please find someone you can talk to..(other than your MD) and just have faith and say your prayers!!!!!
Posted 7/27/2010 3:12 AM (GMT 0)
went on a gluten free, lactose free, salt free, and sugar free diet for months-- using pasta made out of rice flour, lactose-free dairy and stevia natural leef sweetener. think this diet put it in remissions for a while, but currently have v. bad flare up so something has gone terribly wrong without changing diet, so have to go in for colonoscopy but also see a nutrition center tomorrow that will hopefully be beneficial. i've always enjoyed the probiotic yogurt drinks like activia and kefir and also Pb8 and Dr. Hoffman pills my doctor said were good brands. The hoffman pills have a 30 billion count to each small tablet and months supply is pretty cost-effective too. Guess Dr. hoffman is well respected doctor and was director of research centers...guess also anyone will put out a product to make some money.

is weird though because i felt more energy when i did not care about my diet, so hopefully the nutrition center can add something to it to give more energy. am sorry to hear of your suffering, Boodydoo, wish you well. have found prednisone i've found sucks big time, and probably is like by medical community because it knocks out flare-ups pretty good-- but at the age of 43, am being asked to have bone-density exams on regular basis because guess long-terms use of steroids reeks havoc on bones.
Posted 7/27/2010 4:34 PM (GMT 0)
I knew I would get some great insight from you guys, but now I do feel more discouraged and I feel sad that such a large group of people spend their lives suffering like this. Sometimes I'm grateful that this is what I've got, there are much more horrible illnesses and diseases to suffer from but other days I sit around feelings sorry for myself because I can't take my 2 year old out of the house in the fear I won't make it to a bathroom in time.

I'm glad to hear that a gluten free diet has worked for some of you! If I could just get down to 3 BMs a day my doctor wouldn't be pushing the big guns and I could avoid heavy drugs until much later...although I do feel better knowing there's someone out there (Peety) who it looks like really benefited from Remicade. I was also happy to see that kk217 had the some fears and hesitations. Sometimes I feel like a problem patient! Thank you mysticlaker for the probiotic recommendations! Bathroomsprinter, you should definitely find out what you can add to your diet to have more energy. That's concerning, and I hope you get your flare up under control again! Is it stress??
Posted 7/27/2010 4:41 PM (GMT 0)
have you tried the SCD diet. there is a thread going on that. im on simual SCD but ive removed the sugar. its working i havent had bleeding in months now. it does limit me but ive gone on places like raw food netwroks and also looked at scd diet book to give me ideas on how to cook.
Posted 7/27/2010 4:47 PM (GMT 0)
oh im stating to grow my own vegetables so most of my veg is homegrown and organic now.
Posted 7/27/2010 9:11 PM (GMT 0)
For what it's worth, food has never affected my UC. Although Remicade took a while to work and I've had some side effects, it's been great for my UC. Yes, there are some scary side effects, but most people don't experience them. There are tons of probiotics--Culturelle, VSL #3, Florastor, primodophlius reuteri...

I'm sorry you're feeling so awful--I've been there. But it will get better!
Posted 7/31/2010 1:48 AM (GMT 0)
yeah, a lot of it is from stress. than can be big factor i am told by a famous GI doctor i was fortunate enough to squeeze in to see for appointment. but after seeing nutritionist am told that during flare-ups, have to eat more alkaline based foods. there's always place for the medicine am taking too. but the nutritionist, a Harvard graduate, was horrified when told her stories of recklessness with diet and that i eat dinner in under 5 minutes! she said that a lone i have to work on. but am an extremist and even she said diet was only small part of recovery-- is everything put together, including even getting 8 hours sleep per night.
Posted 7/31/2010 4:38 AM (GMT 0)
Sorry you're feling discouraged. Trust me, I know how you feel. I am in the same boat. I am on prednisone and have been for quite a while, always experiencing blips... worst of all, I've gained a lot of weight and my self-image has gone way down. I am really feeling down on myself and I feel like I will never be off of prednisone. Not only that but I feel like surgery is imminent but worst of all, I know that it is just my luck that if I have surgery Ill have some terrible complication or end up worse off. Sorry to be negative but I just have awful luck and this illness has been a roller coaster for me. I haven't had any good, long remission. I was in remission from Asacol for a year but that ended abrupty with a horrendous flare in January that I still haven't gotten a full handle on. I Had a colonoscopy and while my GI said it doesn't look terrible, my symptoms were unbearable. Anyway, I wouldn't stress too much about Remicade, it may help.

Have you tried 6mp or immuran? Could you try increasing your prednisone dose or staying at 40mg until your symptoms subside completely? Maybe you can get off prednisone without any issues and you won't have to start any new drugs. I do understand why your GI says Ascol won't help, it seems like if it stops helping, it's not going to help again in the future. It doesn't help me anymore.

I tried the SCD diet and it didn't help me at all. It was good for keeping my weight down...

Posted 8/5/2010 2:43 AM (GMT 0)
Hi Boodydoo,

I agree with many on here about trying the SCD. Although it did not work for me personally, my professor's wife has improved greatly while on the diet. She is the one who recommended it to me and lent me the book, Breaking the Vicious Cycle. The book describes the diet and the science behind it. She swears by the diet and it is quite healthy.

Doctors can be quite frustrating, and sometimes not very understanding. I have felt very discouraged in the past and I understand completely. But please keep hope that something will work for you. Everyone is different, but I believe that there is a treatment for everyone. I hope healing comes your way.
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