Anyone with Ulcerative colitis?

[piskas]

That has done the pelvisreservoir surgery as well , got some questions.
Must be at least one more on this forum who has/had it?

1: Is your Polyp´s spreading in the smaller intestines or are you free of it?
2: What can you eat/not eat?
3: Fizzydrinks with alcohol is that a mutual problem or just mine?
4: Did they misdiagnose you with cancer as well?


For people without, here is some nice reading.
Ulcerative Colitis

[bronco67]

I had mild colitus a few years back. Had the sigmoidoscopy, colonoscopy, the whole deal. The biggest fix for me was to get more fiber. Try Citrucel once or twice a day, and get fiber from any source you can find. I get that Double Fiber bread, that has 5 grams in one slice.

[piskas]

I will never forget my first colonoscopy and this is a true story.
Went in and laid down on the bed, the nurse midget came and pulled up a chair to stand on. She tried to comfort me by saying it wont hurt, just right after the doctor comes in and shakes my hand, right there when shaking his hand I see that his fingers are HUGE. Midget nurse asks me if I want some sedatives and I pass. Then the doctor with the huge fingers puts some lube on his hands and "warms me up" or whatever, and while he is making my hole loose the midget is stroking my hand assuring me that everything is ok. So I ask the doctor, if this how much it will hurt? Doctor says, this isnt the half of it. Next thing I knew I'm getting sedatives and I´m high having a doctor inside my ass and a midget stroking my hand. Worse trip ever.

Back to the fiber part
For me fiber wont work, it makes my intestines work faster and really fucks it up for me. I removed the large colon and I need food that well makes everything goes slower such as spaghetti and bananas etc. Need to find more food that might slow the old drain down. Combined with the tablets I use (Oxycontin, Loperamid) etc its hard to find a good source of food that slow it down enough to make it work proper so to say!

[Webmaster Advertising]

I heard that most people who get it die

[dozey]

Originally Posted by Webmaster Advertising

I heard that most people who get it die

Don't think so... as I recall it's primarily a case of managing the symptoms. I guess the worst case scenario is your colon becoming so badly compromised that it needs to be removed (colectomy), which probably leaves you with a new set of GI symptoms (not the end of the world though). Ulcer/s might cause bleeding, fibrosis - having your organs chronically scarring is bad, obstructions etc. I think those are the more acute scenarios though, with most cases being treated / sent into remission by medication so you can live normally.

Been watching Doogie Howser. I'm obviously not a doctor, but autoimmune diseases are curious ailments indeed.

[~Ray]

this thread is disgusting

[epitome]

Originally Posted by piskas

That has done the pelvisreservoir surgery as well , got some questions.
Must be at least one more on this forum who has/had it?

1: Is your Polyp´s spreading in the smaller intestines or are you free of it?
2: What can you eat/not eat?
3: Fizzydrinks with alcohol is that a mutual problem or just mine?
4: Did they misdiagnose you with cancer as well?


For people without, here is some nice reading.
Ulcerative Colitis

I have Crohn's Disease, which is usually diagnosed as UC and then if the symptoms worsen they downgrade you to CD.

My problems are all my lower large intestine.

I can pretty much eat whatever I want.

I am going through a cancer scare right now, but it's something on my spine and unrelated to CD. I was never misdiagnosed as possible cancer before though and I've had my CD diagnosis for 15 years with probably at least 150 hospital days by now; possibly a lot more.

[epitome]

Oh yeah...if you have decent insurance, you should try Remicade infusions. They run $3k to $4k every 8 weeks so they'll try to have you do everything but that. I had amazing results with Remicade.

[ry0t]

I just got out of the hospital was there for 7 days with a crohns flare. Got out on Saturday. I have a touch of UC as well. I can't eat popcorn or nuts. If I am in remission I can tolerate alchohol normally. I had it since I was fourteen years old. I am twenty six now. I have not had surgery yet thankfully. Because who wants an ugly scar?

[TheLegacy]

I have ulcerative colitis - had it since I was 13 and I'm 48 now. Going for yearly check up's along with a proper diet I have been fortunately to keep it under control only having flare up's between 5 to 10yr's apart now. My brother has crohn's and he's 61yr's old - painful but his lifestyle is not as regimented as mine. He still eats the wrong foods and refuses to have ongoing medical check-up's.

It is manageable but watch for stress and other factors that create opportunities for the disease to resurface. At 19 I almost died from lack of blood with such a low blood count doctor's said that without me being forced into the hospital I would have had only 3 months left if not less.

Hit me up if you want to chat more on it.

But a quick answer

1: Is your Polyp´s spreading in the smaller intestines or are you free of it? I am not free of it but it hasn't spread.

2: What can you eat/not eat? http://www.ulcerative-colitis.org/ul...tis_books.html

3: Fizzydrinks with alcohol is that a mutual problem or just mine? It is a mutual problem since the fizzy drinks will aggravate the problem along with milk.

4: Did they misdiagnose you with cancer as well? Thankfully even back in the 70's they knew right away what it was and gave me sulfur (long name so kept it short) pill's to quiet it down. I was told that if it kept coming back that I would have to wear a bag outside of my body for waste - but thankfully these past 35 years with proper eating I have avoided the worst case scenerio.

[The Adult Broker]

Chron's: living with it 32 years and counting. hospital admissions-40 and counting. more than that in exploratory testings. 3 surgeries and hope I can stop counting. half year worth of recovery time and out of commission in life. lost count on ER trips. times I thought I was going to die doubled over in pain--lost count. Meds...I keep the pharmacy in business. Pray I don't get knocked down again...every day.

this past year the biggest test of all. but I am still here, still alive and will keep getting up every time I am knocked down. I have to. I am a single mother, a business owner, and I love life and deserve to live.

[96ukssob]

my brother had UC which turned into Crohn's Disease. He got really bad and had to have the proctocolectomy and ileostomy surgery, it was the only option for him

it was really sad to see him go through that part of his life but now hes doing really great and looks and feels a million times better

[TeasersVOD]

There's a book called "Breaking the Vicious Cycle" that's all about changing your diet to foods that help your intestines heal - specifically for people with UC and Chron's. I was having problems that ended up going away on their own, but read the book while i was having problems and it seemed like it made a lot of sense for people with intestinal issues. The woman who wrote the book is named Elaine Gottschall. Hope that helps.

[piskas]

Yea the surgery's is really the worse part.. I´ve been threw 5 of them and the worst part was having the colostomy-bag for 1 year before having the final surgery. Its all gone now and I´m better better but there is still alot of issues that I need to work on such as the food & find a good balance with pills etc. Thanks for all the tips I will look into everything!
Cheers

[epitome]

Isn't it funny how when you think you're all alone in the world, you're really not? Look how many of us here have similar problems!

[Iron Fist]

Originally Posted by piskas

I will never forget my first colonoscopy and this is a true story.
Went in and laid down on the bed, the nurse midget came and pulled up a chair to stand on. She tried to comfort me by saying it wont hurt, just right after the doctor comes in and shakes my hand, right there when shaking his hand I see that his fingers are HUGE. Midget nurse asks me if I want some sedatives and I pass. Then the doctor with the huge fingers puts some lube on his hands and "warms me up" or whatever, and while he is making my hole loose the midget is stroking my hand assuring me that everything is ok. So I ask the doctor, if this how much it will hurt? Doctor says, this isnt the half of it. Next thing I knew I'm getting sedatives and I´m high having a doctor inside my ass and a midget stroking my hand.

Holy fuck... you just gave me an awesome tour description for my midget anal site! Thanks!

[piskas]

Your welcome sharphead lol
Got more if you want

[piskas]

Originally Posted by epitome

Isn't it funny how when you think you're all alone in the world, you're really not? Look how many of us here have similar problems!

I heard that the Asian country's don't have UC or Chrons at all. Wounder if that is true. But yea both me and my brother and a couple of our friends has the same shit.

[The Adult Broker]

Originally Posted by piskas

Yea the surgery's is really the worse part.. I´ve been threw 5 of them and the worst part was having the colostomy-bag for 1 year before having the final surgery. Its all gone now and I´m better better but there is still alot of issues that I need to work on such as the food & find a good balance with pills etc. Thanks for all the tips I will look into everything!
Cheers

hope you are doing better.

ironically I was at my friends visiting the new baby and he father was there, he also has same issues for many years but told me they put him on some type of med not 'traditional' and he has been fine for years and years. He is getting me info on it. they claim he is 'cured'.

I will be happy to forward the info when I get.

ps-piskas-I have a ton of domains for sale and also people buying. if you want to put any up on the broker board on my site of yours, let me know, and we can.

[donnie]

Originally Posted by epitome

Oh yeah...if you have decent insurance, you should try Remicade infusions. They run $3k to $4k every 8 weeks so they'll try to have you do everything but that. I had amazing results with Remicade.

Remicade is good as long as you don't get a negative reaction. I was on Remicade for about 6 months and last time I got it I had a bad reaction. I started to shake at first like I was having some kind of seizure. After that it got worse I couldn’t bread and my heart was beating like crazy. I really thought I was going to die. I had like 5 doctors around me standing by with those electric pedals and adrenalin shots with huge fucking needles. But luckily after about 15 minutes it got over. I still have nightmares about that. They told me just about 0,1% get that kind of reaction so I guess I was just unlucky.

Another drug that works great but is even more expensive is Humira. If you are lucky and it works for you, you basically get cured.

Crazy to see how many people on GFY have UC/Chrons…

What do you guys think about the swine flu and how it will affect us? According to my doctor I should defiantly get a vaccine...

[piskas]

Originally Posted by The Adult Broker

hope you are doing better.

ironically I was at my friends visiting the new baby and he father was there, he also has same issues for many years but told me they put him on some type of med not 'traditional' and he has been fine for years and years. He is getting me info on it. they claim he is 'cured'.

I will be happy to forward the info when I get.

ps-piskas-I have a ton of domains for sale and also people buying. if you want to put any up on the broker board on my site of yours, let me know, and we can.

Thanks Broker I´m getting there, have my ups and downs.
I´ll add you on icq if that´s alright? And we can have chat about the meds and also the domains

[piskas]

Originally Posted by donnie

Remicade is good as long as you don't get a negative reaction. I was on Remicade for about 6 months and last time I got it I had a bad reaction. I started to shake at first like I was having some kind of seizure. After that it got worse I couldn?t bread and my heart was beating like crazy. I really thought I was going to die. I had like 5 doctors around me standing by with those electric pedals and adrenalin shots with huge fucking needles. But luckily after about 15 minutes it got over. I still have nightmares about that. They told me just about 0,1% get that kind of reaction so I guess I was just unlucky.

Another drug that works great but is even more expensive is Humira. If you are lucky and it works for you, you basically get cured.

Crazy to see how many people on GFY have UC/Chrons?

What do you guys think about the swine flu and how it will affect us? According to my doctor I should defiantly get a vaccine...

Thanks mate I´ll read up on Remicade as well for my brother, who is in the first stage of UC atm. Swine flu I don't know really, we get the flu shots for free here. I might get the 2 needed but I´m unsure since I´m a little allergic to eggs.

[ShellyCrash]

Man, I feel for everyone in this thread.

A few of you know, I got really sick about 2 years ago. I was standing in my living room and I sneezed and vomited at the same time & it was all downhill from there. It was like a switch was flipped and I couldn't keep anything down. If I was able to not vomit something up, it would come out the other way.

The doctors couldn't figure out what was wrong. It was like my entire digestive tract was fucked. I had an endoscopy and colonoscopy which they put me under for, but even so, being strapped up with the endocopy ball gag from hell before being put under was pretty traumatic.

They found I had ulcers, but it still didn't explain what was wrong with me. I tested negative for the h.pylori that usually is the cause of them. They tried a bunch of different drugs but I kept getting worse. They found I didn't have the proper gall salts so they thought it was gall bladder. They did some crazy tests and saw that my gall bladder wasn't emptying properly so they decided I must have cancer.

The cancer they told me they thought I had is called cancer of the ampula of vader. It's an extremly rare form of pancreatic cancer and it pretty fatal. Only 40% of patients make it past 5 years after diagnosis. My doctor dropped this on me out of the blue, I was destroyed.

I had more tests done and after thinking I was dying for almost 3 weeks they told me, "oops, not cancer!" so they started looking into other things...

The whole process took 2 years. The benefit was I lost alot of weight but the drawbacks way outweighed the benefits. I couldn't even go to the movies. I'd get situated in the theatre, someone would bring in a hot dog or have BO, and I'd be in the bathroom barfing and dry heaving. It also made working shows fucking hell.

The Cybernet Expo in tampa, spoke on 2 panels, felt pretty good with myself decided to try and eat lunch.. spent almost all of "cooridor cruisin" puking up lunch, then had to pull myself together for the PPT

But anyway, long story short. I went through a bunch of shit doctors before I finally got a good gastro who knew what he was doing. He suspected that the antibiotics I had been put on were the root cause and I had like a massive bacterial infection of my gi tract. So I spent 2 weeks taking 6 antibiotic horse pills a day and then about 2 months taking this probiotic for people with ulcerative colitis called VSL3 twice a day (which is wicked expensive), I was almost back to normal.

I don't really have any major problems anymore and enjoy life again. I can't eat spicy foord, or acidic foods, or raw veggies.. I think I may always be "sensitive", but usually it's just nausea and stomach cramps.

For everyone with UC I would check out VSL3. I will not lie, it is some pricy shit, but you can't put a price tag on quality of life.

[piskas]

Hi Shelly that must have been a really rough time in your life, misdiagnosed with cancer and then to hear that you don't have cancer kinda sucks bigtime. Glad to hear that your better now thou. And thanks for sharing. I lost 3 years of my "youth" but I had a wife that stood by me keeping me going during the darkest of days. Praise her
I bet your from the states? Yea just saw that, we don't have to pay for medicine here in Sweden thank god (well the 1800skr) and then its free. Would have ruined me 10times around if I lived over there spending 1 and a half year in a hospitalbed.

Free Healthcare ftw!

[donnie]

Originally Posted by piskas

Hi Shelly that must have been a really rough time in your life, misdiagnosed with cancer and then to hear that you don't have cancer kinda sucks bigtime. Glad to hear that your better now thou. And thanks for sharing. I lost 3 years of my "youth" but I had a wife that stood by me keeping me going during the darkest of days. Praise her
I bet your from the states? Yea just saw that, we don't have to pay for medicine here in Sweden thank god (well the 1800skr) and then its free. Would have ruined me 10times around if I lived over there spending 1 and a half year in a hospitalbed.

Free Healthcare ftw!

I live in Sweden as well... You should definitely tell your brother about Humira. It is very expensive (like 12k SEK) every two weeks but if you are lucky and it works for you, you are almost cured.

There is also a new method called "leukocyt-aferes". This is probably something you can only get in Sweden. It "cleans" the blood and removes excessive white blood cells. I haven?t tried it myself but I have heard only good things about it.

[piskas]

Cheer Donnie mate I´ll take a look at that option as well! Thanks for all the suggestions and tips!

[xxxdesign-net]

try high dosage of probiotics... VSL#3 if you have the money... and eat healthy... I'd stay away from GMO foods also...

[ShellyCrash]

Originally Posted by piskas

Hi Shelly that must have been a really rough time in your life, misdiagnosed with cancer and then to hear that you don't have cancer kinda sucks bigtime. Glad to hear that your better now thou. And thanks for sharing. I lost 3 years of my "youth" but I had a wife that stood by me keeping me going during the darkest of days. Praise her
I bet your from the states? Yea just saw that, we don't have to pay for medicine here in Sweden thank god (well the 1800skr) and then its free. Would have ruined me 10times around if I lived over there spending 1 and a half year in a hospitalbed.

Free Healthcare ftw!

Sorry to hear that you were in the hospital that long. I had to spend a few nights in the ER here and there to get IV fluids when I would get real bad but lucky for me no extended stays.

The worst part of the cancer scare was telling my grandmother. She had lost my grandfather and my uncle only a few years earlier and I'm really the only close family she has left. When I thought I was dying I was more angry than depressed, finding out I wasn't was a releif, but in the back of my mind I still wonder some days.. what if it really IS there. Doctors can be bastards sometimes.

I have insurance, so my medical bills weren't as bad as they could have been. Lots of co-pays, not sure how much it wound up being, alot but nothing that broke the bank. I too have a great partner who stuck by me through the whole ordeal. W/O him I don't know how I would have handled it.

Check out the VSL#3 if you get a chance. It is designed to help people with UC.

[epitome]

Since we're all getting personal.

After 10 years of putting it off, things got so bad that I had colostomy surgery in late October.

It was the best thing I've ever done. I still have issues, but they are less grueling.

IF your doctor ever recommends this, go for it.

I had so many fears about this surgery, ranging from self-image to thinking it would be disgusting.

I couldn't have been more wrong. I don't even realize it's there and neither does my partner.

Plus, I never have to sit down to take a shit and my asshole will ALWAYS be cleaner than yours!

My only regret was not getting the surgery sooner.

[ShellyCrash]

Originally Posted by epitome

Since we're all getting personal.

After 10 years of putting it off, things got so bad that I had colostomy surgery in late October.

It was the best thing I've ever done. I still have issues, but they are less grueling.

IF your doctor ever recommends this, go for it.

I had so many fears about this surgery, ranging from self-image to thinking it would be disgusting.

I knew a girl in HS that had it done. She seemed to lead a perfectly normal life and if she hadn't told a few of us no one would have ever known.