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Anyone Here Have Crohn's Disease?

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B-Dubs

No Scrubs
Chron's and UC have the same basic symptoms. It really sounds like you may have a gluten allergy. C Diff is also a possibility though. The thing with C Diff is that they'll know almost immediately if you have it just based off your symptoms. It's good you're going to see a doctor though.
 

Bombadil

Banned
As odd as it sounds, you may want to look into fecal transplants.

I'm not sure if I'm there yet. My symptoms, while persistent, are simply to mild to merit that kind of treatment. I know, it's not hard to shove someone else's crap into my rectum, but I'm just not there yet.

Now I'm thinking I should also get checked for soy intolerance.
 

Kientin

Member
Since there is a bit more discussion on colonoscopy/endoscopy. The doctor that found out I had crohn's was doing a colonoscopy and found nothing in the large intestine. However, to make sure he wasn't missing anything he decided to push a little bit into the small intestine and found it in the terminal ileum. I don't know how common it is for doctors to do that, but if you get that test done maybe it would be worth it to ask them to check that location.
 

Jarate

Banned
can this be a thread for people with shitty bowels (see what I did there)

I have IBS, so does that allow me to complain about shitting badly in here?
 

Bombadil

Banned
Since there is a bit more discussion on colonoscopy/endoscopy. The doctor that found out I had crohn's was doing a colonoscopy and found nothing in the large intestine. However, to make sure he wasn't missing anything he decided to push a little bit into the small intestine and found it in the terminal ileum. I don't know how common it is for doctors to do that, but if you get that test done maybe it would be worth it to ask them to check that location.

Yes, sir, I will. I'm going to fully take advantage of my temporary health insurance.

The problem with the doctor I had at the hospital was she wasn't willing to rule out any other causes for my illness before immediately suggesting I had IBS.

By the way, may ask what your symptoms were like? You had inflammation only in your ileum, right?


can this be a thread for people with shitty bowels (see what I did there)

I have IBS, so does that allow me to complain about shitting badly in here?

Sure. Have you done anything to treat your IBS?
 

lil smoke

Banned
What exactly is IBS. As far as I know that is what doctors say when they exhausted all their theories and are ready to give up, but have to come up with some prognasis.

Ask directly. It is hard to get a straight answer on IBS. I've gone to top doctors in NYC/NYU, none of them can tell me what it is other than "it's irritated".
 

Suite Pee

Willing to learn
I have Crohn's disease. An ulcer burst open yesterday in the middle of my busy day. Just had to keep going. I'm on Humira and Entocort at the moment.

edit: I need to start injecting myself with B12 so I don't have to at my doctor's office.
 

B-Dubs

No Scrubs
What exactly is IBS. As far as I know that is what doctors say when they exhausted all their theories and are ready to give up, but have to come up with some prognasis.

Ask directly. It is hard to get a straight answer on IBS. I've gone to top doctors in NYC/NYU, none of them can tell me what it is other than "it's irritated".

The thing is no one really knows what causes IBS or UC or Chron's. It's just one of those things.
 

Bombadil

Banned
What exactly is IBS. As far as I know that is what doctors say when they exhausted all their theories and are ready to give up, but have to come up with some prognasis.

Ask directly. It is hard to get a straight answer on IBS. I've gone to top doctors in NYC/NYU, none of them can tell me what it is other than "it's irritated".

The muscles of your intestines contract and expand in a rhythmic fashion to help digest your food.

A popular theory among gastroenterologists is that IBS occurs when that rhythm gets fucked up. Why does it get messed up?

More hypotheses:

-Bacterial infection.
-Antibiotics kill all the good bacteria in the intestines.
-Overload of signals from the brain to the intestines that causes the intestines to work more than they should.

The doctor at the hospital told me I probably have IBS and should just increase my fiber intake and avoid heavy, fatty foods. She told me to exercise as well, go walking and such.

She told me to take Metamucil, and flaxseed, but not both.

Having a fiber-heavy diet can aggravate problems for some people. The causes for IBS vary per individual and treatment often consists of trial and error.

But scientists, thankfully, are always researching it and are still looking for an underlying cause. If and when they discover it, millions... MILLIONS of people are going to be very happy.

IBS can be aggravated by stress, but is not caused by it.

Going from eating one meal a day to eating three meals a day can cause it, so a lot of people who attempt to eat healthy can start to experience diarrhea and constipation. Many push through it and start to normalize.

But bottom line, I think doctors should only diagnose someone with IBS once all the other serious conditions are ruled out.
 

Bombadil

Banned
I have Crohn's disease. An ulcer burst open yesterday in the middle of my busy day. Just had to keep going. I'm on Humira and Entocort at the moment.

edit: I need to start injecting myself with B12 so I don't have to at my doctor's office.

Shit. Sorry, dude. Did you feel it burst? And where do you live, may I ask? I ask because they're starting some promising trials for Crohn's and UC sufferers. Another gaffer posted a link.
 

jimi_dini

Member
What exactly is IBS. As far as I know that is what doctors say when they exhausted all their theories and are ready to give up, but have to come up with some prognasis.

Ask directly. It is hard to get a straight answer on IBS. I've gone to top doctors in NYC/NYU, none of them can tell me what it is other than "it's irritated".

EDIT: wait, you wrote IBS. I read that as IBD.

A professor from Germany (Professor Stremmel) solved the riddle about the cause of Ulcerative Colitis.
It's actually a defect in the mucosa of the colon. There is less phosphatidylcholine in the colonic mucosa of patients with UC. This defect makes it possible for bacteria to get a bit in, where they are never supposed to be - it's normally supposed to be sterile, where the bacteria is able to get to. Which then triggers inflammation. And because the colon is full of bacteria, those attacks will never stop. Which then gets the immune system going crazy after some time.

And that's not a theory anymore. Because of that finding he also found out that if you get phosphatidylcholine into the colon, the barrier will work again and the inflammation will stop. You will have to do this for your whole life though. But there are no real sideeffects. Phosphatidylcholine is in soja-lecithin and egg-lecithin (but you can't just consume those directly, because it won't reach the colon that way), it's nothing dangerous at all. The only known side-effect is bloating and that's a joke compared to all the other crap that you will get with this condition, especially when it gets really bad.
 

Slayer-33

Liverpool-2
I do, it nearly destroyed me from age 19 til 23 and had other effects on me til 26... (mental/anxiety issues/panic) that shit is fucking over thankfully.

Terrible fucking condition when it's actively destroying you.

Thankfully my 6-MP (mercatopurine/purinethol) is working 100% for me. I don't have any issues. I wish the best of luck for anyone suffering from this shit, hopefully you find a med that works for you. I only drink 1 6-MP pill a day and so far it has been excellent with zero side effects, ask about it if you don't take it, it takes about 3 months for it to take effect.

A professor from Germany (Professor Stremmel) solved the riddle about the cause of Ulcerative Colitis.
It's actually a defect in the mucosa of the colon. There is less phosphatidylcholine in the colonic mucosa of patients with UC. This defect makes it possible for bacteria to get a bit in, where they are never supposed to be. Which then triggers inflammation. And because the colon is full of bacteria, those attacks will never stop. Which then gets the immune system going crazy after some time.

And that's not a theory anymore. Because of that finding he also found out that if you get phosphatidylcholine into the colon, the barrier will work again and the inflammation will stop. You will have to do this for your whole life though. But there are no real sideeffects. Phosphatidylcholine is in soja-lecithin and egg-lecithin (but you can't just consume those directly, because it won't reach the colon that way), it's nothing dangerous at all.

That is really interesting, I wonder if this would apply to CD too.
 

Bombadil

Banned
A professor from Germany (Professor Stremmel) solved the riddle about the cause for Ulcerative Colitis.
It's actually a defect in the mucosa of the colon. There is less phosphatidylcholine in the colonic mucosa of patients with UC. This defect makes it possible for bacteria to get a bit in, where they are never supposed to be. Which then triggers inflammation. And because the colon is full of bacteria, those attacks will never stop. Which then gets the immune system going crazy after some time.

And that's not a theory anymore. Because of that finding he also found out that if you get phosphatidylcholine into the colon, the barrier will work again and the inflammation will stop. You will have to do this for your whole life though. But there are no real sideeffects. Phosphatidylcholine is in soja-lecithine and egg-lecithine (but you can't just consume those directly, because it won't reach the colon that way), it's nothing dangerous at all.

So, he found a cure for UC? And how must one consume the phosphatidylcholine?
 

Kientin

Member
Yes, sir, I will. I'm going to fully take advantage of my temporary health insurance.

The problem with the doctor I had at the hospital was she wasn't willing to rule out any other causes for my illness before immediately suggesting I had IBS.

By the way, may ask what your symptoms were like? You had inflammation only in your ileum, right?

Plenty of blood that's for sure. One time when it was probably at it's worst I needed to go to the doctor because I was crapping out a big bloody mass about every 30 min. Lots of stomach pain, usually in waves of spasms, would be doing something and this huge wave of pain would hit my stomach that usually stopped me from doing anything for a bit. When it's really bad it stays pretty sore on top of the spasms. My stool does get pretty soft, but unlike many with chron's I get more constipation then diarrhea, maybe it's the location? I'm way more scared of that then diarrhea, if I plug up things get bad pretty fast. I get quite a bit of fatigue, this made working at a couple jobs real hard. I would be ok for the first four hours, then it would just be straight up hard to function and I would underperform for the rest of the day. Those jobs required more manual labor. Milk and foods with lots of fiber make me pretty sick, can't really eat mini wheats or lots of green veggies for sure :(. Soy milk for me is great though.

That's pretty much what I got for the most part I think. Luckily mine was never bad enough that I never needed any of my intestine removed though.
 

jimi_dini

Member
So, he found a cure for UC? And how must one consume the phosphatidylcholine?

It needs to get specially prepared, so that it passes stomach and small intestines. But then yes it works. I take it since end of 2009. Had to switch from the official (study-)medicine to an unofficial one. It's a long story, but the important thing is - it works. I was one of the worst UC cases in my whole country back then. Had remicade and all that crap. Doctors even told me that I would have to get surgery and lose my colon. Then I got this magic. Back then I didn't believe anymore that it could work.

I take around 16 grams of granules per day. Around 2g phosphatidylcholine per day is enough (there is around 30% phosphatidylcholine in soja-lecithin and 70-80% phosphaitdylcholine in egg lecithine). And it really needs to get taken all the time.

That is really interesting, I wonder if this would apply to CD too.

No. It doesn't. Although sometimes patients with UC are diagnosed having CD and patients with CD are diagnosed having UC. For patients, that really have CD, it definitely won't work. But they currently assume that it's just some other defect or a virus of some sort.
 

lil smoke

Banned
That is interesting. So is that a bacterial strain that you are populating directly into your colon? And how, by capsule? I take it that would be impossible to get anywhere else.
 

DarkFlow

Banned
I have it. (Well maybe, It might be UC also. The Dr's can't really pick one lol) I've been put in the hospital twice for it for a week each time.

The First time I had a flare up was when I was about 23. I started going to the bathroom a lot, like every hour or so. I never felt like my colon would empty. After about a week of this i started see a lot of Blood in the bowl after each dump. Then I got the point of basically living on the shitter because i would have to shit every 15 mins, and most of it was just blood.

Being a dumb 23 year old, I guessed i could just ride it out and I would get better, yeah that was the wrong answer. I started getting crazy fevers, not being to hold down water because I was so dehydrated. I finally went to the ER, they had to give me two Iv's of saline because I had lost so much water. They also almost gave me a blood transfusion because I had shit out so much blood.

The week in the hospital I had a few cat scans, a colonoscopy, and a crap load of drugs. Took me weeks to get better even after I left. I was on so much pain pills I was basically floating out of my mind for the whole time.

2nd time was like 2 years later on my birthday of all days, I knew what it was that time, but I was scared to go to the hospital because I had no insurance. I finally said fuck it cause I was dying and they repeated all the same stuff as before. I'm 29 now and have not had a flare up since, but I'm always scared another one is going to flare up because it's a matter of when, not if really.
 

Chinner

Banned
Since there is a bit more discussion on colonoscopy/endoscopy. The doctor that found out I had crohn's was doing a colonoscopy and found nothing in the large intestine. However, to make sure he wasn't missing anything he decided to push a little bit into the small intestine and found it in the terminal ileum. I don't know how common it is for doctors to do that, but if you get that test done maybe it would be worth it to ask them to check that location.

crohns can affect any part of the digestive tract from mouth to bum, so any decent doctor will check as far as they can from both sides.
 

Kientin

Member
crohns can affect any part of the digestive tract from mouth to bum, so any decent doctor will check as far as they can from both sides.

That's what I'm assuming, just the way the report was told to me made it sound like he was going to end it at the large but just decided just in case to check the small. Also I guess it's worth mentioning that when I was trying to get my problem diagnosed I had no idea about crohn's and we weren't looking for it specifically, but that's what they found.
 

Threi

notag
Yeah...got diagnosed two summers ago (awful experience, had multiple flare ups, lost a TON of blood, passed out in the hospital, blood transfusions, etc.)

On Azathioprine right now and it seems to be working great for me. Been good since.
 

Bombadil

Banned
I have it. (Well maybe, It might be UC also. The Dr's can't really pick one lol) I've been put in the hospital twice for it for a week each time.

The First time I had a flare up was when I was about 23. I started going to the bathroom a lot, like every hour or so. I never felt like my colon would empty. After about a week of this i started see a lot of Blood in the bowl after each dump. Then I got the point of basically living on the shitter because i would have to shit every 15 mins, and most of it was just blood.

Being a dumb 23 year old, I guessed i could just ride it out and I would get better, yeah that was the wrong answer. I started getting crazy fevers, not being to hold down water because I was so dehydrated. I finally went to the ER, they had to give me two Iv's of saline because I had lost so much water. They also almost gave me a blood transfusion because I had shit out so much blood.

The week in the hospital I had a few cat scans, a colonoscopy, and a crap load of drugs. Took me weeks to get better even after I left. I was on so much pain pills I was basically floating out of my mind for the whole time.

2nd time was like 2 years later on my birthday of all days, I knew what it was that time, but I was scared to go to the hospital because I had no insurance. I finally said fuck it cause I was dying and they repeated all the same stuff as before. I'm 29 now and have not had a flare up since, but I'm always scared another one is going to flare up because it's a matter of when, not if really.

I'm glad you're doing better, but damn, dude, you really messed up in thinking that it would just go away. I suppose we could chalk that up to thinking we're invincible when we're young.

That's what I'm assuming, just the way the report was told to me made it sound like he was going to end it at the large but just decided just in case to check the small. Also I guess it's worth mentioning that when I was trying to get my problem diagnosed I had no idea about crohn's and we weren't looking for it specifically, but that's what they found.

When you first started experiencing symptoms, were they that severe? Blood in the stool and all that? Because that hasn't happened to me. I thought it had, but really I was just going by the description of bloody stool as being unformed and like coffee grounds. To tell you the truth, I don't spend a lot of time looking at coffee grounds since I don't drink coffee.

Yeah...got diagnosed two summers ago (awful experience, had multiple flare ups, lost a TON of blood, passed out in the hospital, blood transfusions, etc.)

On Azathioprine right now and it seems to be working great for me. Been good since.

Sucks. I'm thankful that there are brilliant minds diligently researching these diseases.
 

Kientin

Member
When you first started experiencing symptoms, were they that severe? Blood in the stool and all that? Because that hasn't happened to me. I thought it had, but really I was just going by the description of bloody stool as being unformed and like coffee grounds. To tell you the truth, I don't spend a lot of time looking at coffee grounds since I don't drink coffee.

To various degrees on each one, I think I had crohn's a long time before I was finally diagnosed with it. I remember missing a whole bunch of school because I was sick all the time. I did have blood in the stool, but it wasn't too much until I had my gallbladder out which is when I was working this job that required a lot of lifting. I was very sick with it at the time and in hindsight I'm fortunate to have kept the job at all. I had so many tests done and I couldn't just find out what it was and a couple body functions started to fail, gallbladder being a casualty from that. Quit that job after the operation, and started getting better until it came back a couple months later. That's when I got the colonoscopy that finally showed it. Before I started bleeding lots though, there was lots of swelling. That constipation was there for sure and I remember swelling on the rectum. Spasms were there, fatigue was there, lactose intolerance was there.

It was just a long battle of trying to find out what was wrong haha. Lots of times with the nausea and fatigue that came out of it I wondered often if it was just me getting stressed out or something.
 
I have Crohns, but a pretty mild case of it that I manage without meds. I've been lucky enough to only be hospitalized once. I had an infection that just made me vomit and pass most of the liquid in my body. Within a span of 3 hours I could barely stand or speak, and by the time I got to the hospital I was running a incredibly high fever. The doctors immediately treated me for the infection and have me several bags of IV to replenish the liquids I had lost.
 

Bombadil

Banned
To various degrees on each one, I think I had crohn's a long time before I was finally diagnosed with it. I remember missing a whole bunch of school because I was sick all the time. I did have blood in the stool, but it wasn't too much until I had my gallbladder out which is when I was working this job that required a lot of lifting. I was very sick with it at the time and in hindsight I'm fortunate to have kept the job at all. I had so many tests done and I couldn't just find out what it was and a couple body functions started to fail, gallbladder being a casualty from that. Quit that job after the operation, and started getting better until it came back a couple months later. That's when I got the colonoscopy that finally showed it. Before I started bleeding lots though, there was lots of swelling. That constipation was there for sure and I remember swelling on the rectum. Spasms were there, fatigue was there, lactose intolerance was there.

It was just a long battle of trying to find out what was wrong haha. Lots of times with the nausea and fatigue that came out of it I wondered often if it was just me getting stressed out or something.

Well, jeez, that doesn't assuage me much. I don't remember missing too much school but I did get nausea from time to time and vomited during those times. I'm lactose intolerant, and have been for a couple of years. I haven't had any major bouts of constipation. I guess I'll find out in a few weeks what this is.
 

grumble

Member
Got to say, one of the main lessons I learned from the OP was to avoid eating shitty food like that. It's like a form of self harm or something.
 

LayLa

Member
It needs to get specially prepared, so that it passes stomach and small intestines. But then yes it works. I take it since end of 2009. Had to switch from the official (study-)medicine to an unofficial one. It's a long story, but the important thing is - it works. I was one of the worst UC cases in my whole country back then. Had remicade and all that crap. Doctors even told me that I would have to get surgery and lose my colon. Then I got this magic. Back then I didn't believe anymore that it could work

hi, i have UC and find this fascinating. why do you think this has not become a mainstream treatment if it is so effective? is it expensive, or does it need more testing?
 

S.Dedalus

Member
I've had it for years, just got off imuran since that decided to stop working, so I've been taking remicade recently. An IV ever 6 weeks or so. It sucks, but it could be worse, my symptoms are pretty much gone. I still take Flagyl if there's a big flare-up though, but that causes a whole other slew of minor shit for me, like thrush for one. I used to take ursodial but after I had a liver transplant, I haven't needed that anymore. Woo.

Edit: also, colonoscopies are the fucking worst. It's ruined like three drinks for me, since I took it with the salty solution or whatever, and then castor oil once. Awful, awful. The prep is the worst, but other than that, it's fine.

For the colonoscropy prep, ask your doctor to prescribe the pills next time. They don't tell you that you can take pills instead of drinking that horrible liquid stuff, but if you ask for them, they'll do it. You have to take a lot of them, really fast, with tons of liquid (water, sprite, juice, ...the normal clear liquid diet things). But they work just as well as the chalky and the salty liquids, with less gagging.

I have Crohn's Disease - diagnosed in 2008 when I was 20. I was having really sharp pains in my side for about a week. My doctor ordered a bunch of tests - bloodwork, CT scan, checked my ovaries for cysts (that was fun)...she eventually referred me to a gastroenterologist who did a colonoscopy and confirmed that it was Crohn's Disease around the terminal ileum.

It seems like it hit me suddenly within a few months. For my whole life, I was able to eat dairy and spicy foods and have no problems, but all of a sudden those same foods were torturous. I was having horrible stomach cramps many times a week, only relieved through a painful bathroom experience.

My first gastroenterologist put me on Asacol to control inflammation (and later bumped it up to Asacol HD, with a few spurts of corticosteroid [Entecort] when my flareups were bad). After moving, my new gastro doctor changed me over to Imuran (immunosuppressant) with a tapering of Prednisone. While I was on the steroid, things were fine. I gained a bit of weight that I'm having trouble getting rid of still, but my symptoms calmed down. Once I tapered off the steroid though, I was really sick for about a month...horrible stomach cramps mixed with constipation, only ending in big, painful, often bloody, poops. It really interfered with my life - I had to stay home from events, I had to leave work early several times, and I got so exhausted and distraught having to deal with the pain. So I made an appointment with my doctor and we decided on Remicade infusions. This appointment was months ago, and the bullshit between his office and the hospital and my insurance companies and the Remicade people has been such a draining mess...I absolutely cannot figure it out or deal with it anymore. It's also fucking expensive, and my insurance is shitty.

I've actually been doing a bit better for the last month or two, so I decided not to go ahead with the Remicade (was starting to think it would never happen anyway...never even scheduled my first infusion). When I told my doctor that I wanted to stick with the current meds and see how it went, he said he wanted to see me in the office for a follow-up. So I have that next week...kind of scared for how that will go. It wasn't just the cost and the confusing process that skewed me away from Remicade; it also comes with some pretty serious risks (even higher risk of easy infection than I have now; bad reactions; much higher cancer risks, etc) that I'm not sure would be worth it. I'd have to be feeling SO much worse than I am for me to take the step up to biologic treatments, I think.

Luckily, mine has never been bad enough to put me in the hospital or require surgery. It's really rough at times though. I miss certain foods. I still get some stomach cramping...sometimes it's so bad that my legs go numb. It usually hurts when I poop. I have joint pain and fatigue. I'm working on living a healthier lifestyle now - eating right, exercising, drinking plenty of water, taking some vitamin supplements. It seems to be mostly working, along with the Imuran, but I'm still going to talk with my doctor a lot about all this. Luckily, most of the people around me are supportive and caring.

Good luck to the rest of you out there dealing with this and similar diseases/disorders.
 

jimi_dini

Member
hi, i have UC and find this fascinating. why do you think this has not become a mainstream treatment if it is so effective? is it expensive, or does it need more testing?

It's known since 1999. See this patent. Problem was that they didn't want to give it away to the pharma industry, because they feared that they could "forget about it". Soy-lecithin is really cheap. The official medicine that I got was around 150EUR/month in production costs and that would get even cheaper - back then it was only produced for around 400-500 patients in total. And those costs will go even lower when it's produced for many more patients. That's why their thoughts back then made sense. Especially when compared against 3000-4000EUR Remicade costs every 2 months.

But they overestimated their abilities and didn't even manage to get the approval process going and ran out of money. They did several studies though. The patent was sold in 2009 to Falk Pharma and the approval study (phase III) is supposed to finally start this year (sometime from now till mid 2013). They also improved the original medicine (I got the original one which is basically soy-lecithin + Eudragit S100). Like I previously said soy-lecithin contains around 30% phosphatidylcholine. Problem with this is, that some people are allergic against soy-lecithin (actually against some of the remaining 70%). The improved medicine uses highly concentrated phosphatidylcholine - it's around 90%-95% phosphatidylcholine instead.

I'm using exactly that for my suppositories, which I take additionally. If your treatment doesn't work really well (or your condition gets worse), you could at least consider asking a pharmacy to get in contact with the pharmacy of the clinic in Heidelberg Germany to get a recipe to create those. They could also order a few hundreds from there, so that you could check, if it works out or not. They are really easy for a pharmacy to create. They would have to order that highly concentrated phosphatidylcholine though - and that one is quite expensive - around 300EUR per kg and needs to be kept at really cold temperatures all the time. But one kg is enough for around 2 1/2 years (!) of suppositories and they will at least help any inflammations in the last centimeters of your rectum (that's where normally the most severe inflammation is - that's why I take them additionally) and that way you could also try, if it helps you.

What I heard is that they are planning for approval in the whole EU for now. More information about it here. I personally really hate that they really take their time. I was told end of 2010, that they may get it approved till end of 2012. If there was no inofficial medicine created by one pharmacy in Germany, I would be in a really bad situation now.

Oh and btw. if you should try it - don't expect miracles within days. The phosphatidylcholine just stops the bacteria. Your immune system needs to do the rest and that can take months. For me it took around 4 months till all the inflammations were gone. Remicade on the other hand shuts down parts of the immune system, but the cause isn't stopped at all, which explains why Remicade stopped working for me after 3 infusions.
 

Bombadil

Banned
For the colonoscropy prep, ask your doctor to prescribe the pills next time. They don't tell you that you can take pills instead of drinking that horrible liquid stuff, but if you ask for them, they'll do it. You have to take a lot of them, really fast, with tons of liquid (water, sprite, juice, ...the normal clear liquid diet things). But they work just as well as the chalky and the salty liquids, with less gagging.

I have Crohn's Disease - diagnosed in 2008 when I was 20. I was having really sharp pains in my side for about a week. My doctor ordered a bunch of tests - bloodwork, CT scan, checked my ovaries for cysts (that was fun)...she eventually referred me to a gastroenterologist who did a colonoscopy and confirmed that it was Crohn's Disease around the terminal ileum.

It seems like it hit me suddenly within a few months. For my whole life, I was able to eat dairy and spicy foods and have no problems, but all of a sudden those same foods were torturous. I was having horrible stomach cramps many times a week, only relieved through a painful bathroom experience.

My first gastroenterologist put me on Asacol to control inflammation (and later bumped it up to Asacol HD, with a few spurts of corticosteroid [Entecort] when my flareups were bad). After moving, my new gastro doctor changed me over to Imuran (immunosuppressant) with a tapering of Prednisone. While I was on the steroid, things were fine. I gained a bit of weight that I'm having trouble getting rid of still, but my symptoms calmed down. Once I tapered off the steroid though, I was really sick for about a month...horrible stomach cramps mixed with constipation, only ending in big, painful, often bloody, poops. It really interfered with my life - I had to stay home from events, I had to leave work early several times, and I got so exhausted and distraught having to deal with the pain. So I made an appointment with my doctor and we decided on Remicade infusions. This appointment was months ago, and the bullshit between his office and the hospital and my insurance companies and the Remicade people has been such a draining mess...I absolutely cannot figure it out or deal with it anymore. It's also fucking expensive, and my insurance is shitty.

I've actually been doing a bit better for the last month or two, so I decided not to go ahead with the Remicade (was starting to think it would never happen anyway...never even scheduled my first infusion). When I told my doctor that I wanted to stick with the current meds and see how it went, he said he wanted to see me in the office for a follow-up. So I have that next week...kind of scared for how that will go. It wasn't just the cost and the confusing process that skewed me away from Remicade; it also comes with some pretty serious risks (even higher risk of easy infection than I have now; bad reactions; much higher cancer risks, etc) that I'm not sure would be worth it. I'd have to be feeling SO much worse than I am for me to take the step up to biologic treatments, I think.

Luckily, mine has never been bad enough to put me in the hospital or require surgery. It's really rough at times though. I miss certain foods. I still get some stomach cramping...sometimes it's so bad that my legs go numb. It usually hurts when I poop. I have joint pain and fatigue. I'm working on living a healthier lifestyle now - eating right, exercising, drinking plenty of water, taking some vitamin supplements. It seems to be mostly working, along with the Imuran, but I'm still going to talk with my doctor a lot about all this. Luckily, most of the people around me are supportive and caring.

Good luck to the rest of you out there dealing with this and similar diseases/disorders.

I'm not an expert, as everyone here knows, but I really don't think you should hold off on the Remicade just because you feel better now. I've read many posts on other forums dedicated to IBD and a lot of posters say they made the mistake of stopping medication once they felt better. My mother does this sometimes with her heartburn medication. She feels good so she stops taking it for three of four days, and then her heartburn starts acting up. If you just take it continually, you can maybe avoid a flare-up.
 

demon

I don't mean to alarm you but you have dogs on your face
For the colonoscropy prep, ask your doctor to prescribe the pills next time. They don't tell you that you can take pills instead of drinking that horrible liquid stuff, but if you ask for them, they'll do it. You have to take a lot of them, really fast, with tons of liquid (water, sprite, juice, ...the normal clear liquid diet things). But they work just as well as the chalky and the salty liquids, with less gagging.

My sister had a colonoscopy recently to check for Crohn's (she has it), and she was prescribed the pills. It was a horrible experience.....it had none of the intended effect and made her 'insides hurt' (she wouldn't be more specific). And she ended up using the liquid stuff and doing an enema late at night which meant she got virtually no sleep and wasn't fully "prepped" for the procedure. Needless to say she regretted taking the pills.
 
For the colonoscropy prep, ask your doctor to prescribe the pills next time. They don't tell you that you can take pills instead of drinking that horrible liquid stuff, but if you ask for them, they'll do it. You have to take a lot of them, really fast, with tons of liquid (water, sprite, juice, ...the normal clear liquid diet things). But they work just as well as the chalky and the salty liquids, with less gagging.

This. I've had three colonoscopies and a sigmoidoscopy for mu UC. I've tried the fleet phospho soda (Or "Gallon of Nasty Crap," as my sister's husband who has Crohns dubbed it), the enema (The gallon of nasty crap is really nasty enough to make you attempt the enema) and the Osmoprep tablets. The tablets are far and away the best option. They still make you feel shitty once they get into your stomach, but if you take them fast you never have to taste them. Just be sure to get your technique down, because if they don't go down fast enough, you will taste them and they taste the same as the gallon of nasty crap.
 

bro1

Banned
If you can get your doctor to prescribe you remicade I would go for that. I have been on it now for over a year and I feel amazing. No flares, no issues at all. I was going 15 times a day prior to that with tons of blood loss, high fever, shingles from a lowered immune system, etc. Now I am 100%
 

jred2k

Member
Yeah Remicade is as close as I've ever come to calling something a miracle. Going from two years of being on and off prednisone to being on Remicade for a year now the difference is magnificent. My UC hasn't flared up the entire time I've been on it.
 

S.Dedalus

Member
My sister had a colonoscopy recently to check for Crohn's (she has it), and she was prescribed the pills. It was a horrible experience.....it had none of the intended effect and made her 'insides hurt' (she wouldn't be more specific). And she ended up using the liquid stuff and doing an enema late at night which meant she got virtually no sleep and wasn't fully "prepped" for the procedure. Needless to say she regretted taking the pills.


Wow, that sucks. I've never had any problem with the pills (used them twice so far), but I guess it does affect people differently.


And as for the Remicade, it's not like I'm stopping all medication. I'm still taking the Imuran, just coupled with a healthy lifestyle. The infusions would also be crazy expensive for me, even with insurance and benefit packages. It's comforting to know that if I do get bad enough, I still have that option (just might not be able to have an apartment or pay bills, but oh well...). But it's not that bad yet.

But I'm definitely going to talk this out with my doctor next week.
 

LayLa

Member
Interesting stuff

Thanks for the in-depth post. Mine is highly localized in the last 20cm so it sounds like it would be perfect for me. Highly unlikely I'll be able to get a regular supply of it any time soon though. Luckily I have it relatively under control these days with a mixture of Mesalazine & strict diet. The next time I speak to my (German!) hospital consultant I'll definitely ask him about this.
 

Bombadil

Banned
Do any of you experience an overactive gag reflex?

I've been feeling slightly nauseous but it's different in that I'm not experiencing the dizziness and sweating and salivation that generally accompanies normal nausea and vomiting. I gag several times as if I'm vomiting but nothing is expelled and then I burp and stop. It actually makes me feel a little better for a while.

What could this be caused by?
 

jimi_dini

Member

Chopper

Member
Do any of you experience an overactive gag reflex?

I've been feeling slightly nauseous but it's different in that I'm not experiencing the dizziness and sweating and salivation that generally accompanies normal nausea and vomiting. I gag several times as if I'm vomiting but nothing is expelled and then I burp and stop. It actually makes me feel a little better for a while.

What could this be caused by?
I have this. Does it happen especially in the mornings? Gagging and burping (wretching?) makes the "empty" pain and nausea go away, but I can't eat til lunchtime.
 

Bombadil

Banned
I have this. Does it happen especially in the mornings? Gagging and burping (wretching?) makes the "empty" pain and nausea go away, but I can't eat til lunchtime.

You got to see a doctor about it.

I have an appointment on the 12th where I'll ask my GI to perform a colonoscopy, endoscopy, and a battery of tests to determine what this shit is because it's beating me right now. I wake up every morning and sob uncontrollably. I get very upset that my mom and sister have to leave for work and I count the minutes until their return.

I read your other post in this thread, Chopper. You really should see a doctor because that kind of unexplainable nausea is simply not something you should leave alone. I don't want to scare you but I was just looking it up on mayoclinic, and of course, brain tumors can cause it. There are other symptoms, too, like vision changes and headaches and personality changes.

In any case, go to a doctor. If you live in Cali, let me know because I got a year's worth of medical insurance for having no income.
 

jimi_dini

Member
Just found out about this case study. Pretty interesting.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108661/

Patients and methods:

A case study of a 37-year-old male with a 22-year history of Crohn’s disease whose clinical course had experienced no sustained remissions. The patient was treated with a protocol that utilized serotonin and dopamine amino acid precursors administered under the guidance of organic cation transporter assay interpretation.

Results:

Within 5 days of achieving the necessary balance of serotonin and dopamine, the patient experienced remission of symptoms. This remission has been sustained without the use of any Crohn’s disease medications.

Conclusion:

In Crohn’s disease, it is known that there is an increase of both synthesis and tissue levels of serotonin in specific locations. It is asserted that this is prima facie evidence of a significant imbalance in the serotonin–dopamine system, leading to serotonin toxicity. The hypothesis formulated is that improperly balanced serotonin and dopamine transport, synthesis, and metabolism is a primary defect contributing to the pathogenesis of Crohn’s disease.

Maybe it's interesting to some people in here.
 

Chinner

Banned
I know serotonin is usually linked to happiness and well meaning, but what does they study conclusion mean?

edit: oh right, an imbalance could could contribute to symptoms.
 

jimi_dini

Member
I know serotonin is usually linked to happiness and well meaning, but what does they study conclusion mean?

IBDs are not caused by psyche.

But it seems that serotonin + dopamine/catecholamine are not balanced out in the intestinal tract of Crohn's patients - it has nothing to do with depression in this case. Which then causes barrier issues. Which then lead bacteria to attack. Which then causes inflammations.

It seems in the study case there was way too much serotonin and they balanced that out. And then everything went back to normal. But just like with Phosphatidylcholine you need to take it/balance it out all the time, otherwise it will go berserk again.

And they even say this may be true for Ulcerative Colitis patients as well. For those phosphatidylcholine definitely works and it's definitely a barrier problem in the case of UC. The serotonin/dopamine+catecholamine imbalance may be the one-higher-up cause for UC as well with phosphatidylcholine missing in the mucosa just being caused by that imbalance.

For me it makes sense that Crohn's is a barrier problem as well.

It goes further into detail:
There is a known genetic defect of OCTN1 and OCTN2 in the colon of patients suffering from Crohn’s diease. All OCT and OCTN transporters are capable of transporting organic cations, including serotonin, dopamine, and their precursors. In Crohn’s disease, the serotonin content of the mucosa and submucosa of the proximal and distal colon is increased. Increased synthesis of serotonin is known to be associated with Crohn’s disease. No reasonable explanation of the etiology of serotonin elevation in the colon tissue of Crohn’s disease patients has been put forth previously.

It is postulated that the known OCTN1 and OCTN2 genetic deficit may be tied to the increased synthesis and tissue levels of serotonin seen with Crohn’s disease. Based on OCT assay interpretation, it appears that a severe imbalance between serotonin and dopamine transport, synthesis, and metabolism is at the heart of Crohn’s disease.

An imbalance of the serotonin–dopamine transport system has been linked to numerous diseases. It is proposed that much of the clinical constellation found with Crohn’s disease may be induced by a serotonin toxicity of the colon exacerbated by relatively low levels of dopamine resulting from defective OCTN transport.
 

Chinner

Banned
I always hear people say day stress can cause a flare up for crohns sufferers. I was never sure of the validity of that claim, but would these studies disprove that?
 

jimi_dini

Member
I always hear people say day stress can cause a flare up for crohns sufferers. I was never sure of the validity of that claim, but would these studies disprove that?

No.
That's in fact right. IBD flare-ups may be caused by stress. Although IBDs themselves are not caused by stress. I can confirm that myself. I had massive stress (job related) which then caused a massive flare-up back then.

Although normally "stress" is seen as negative stress like the stress I described (job-related). I also read about other people getting a flare-up because of "good stress" for example getting a new boy/girlfriend. Noone would call that typically stress, but in fact that's stress for the body too. Stress is like poison to patients with an IBD.

That's why IBD patients should try to keep their cool. Not stress themselves, especially not job-related. I personally learned to be a lot cooler, even in situations where other people would jump in circles.

And the study is compatible with that.
 

Chinner

Banned
fair enough then, i'm reading those studies a bit more indepth so its making more sense now. i appreicate flares up by caused by stress, as opposed to causing the IDB itself, otherwise many more people would have it! i didn't even know about the concept of good stress either, quite interesting actually.
 

jimi_dini

Member
Just thought - hell, maybe there is a clinical trial. And what a shock - there is.

They are currently recruiting:
http://clinicaltrials.gov/ct2/show/NCT01650311

Ages Eligible for Study: 19 Years to 85 Years
Genders Eligible for Study: Both
Accepts Healthy Volunteers: Yes
Sampling Method: Non-Probability Sample

Inclusion Criteria:

- Patient groups: Disease diagnosis (CD or UC),duration of disease, previous/type of treatments, duration of treatment and disease prognosis.
- Healthy controls: No diagnosis of CD or UC and no diagnosis of IBS.

Exclusion Criteria:

- Patient groups: Drugs that directly affect components of 5-HT signaling, any other disease or condition that may interfere with study assessments as judged by the investigator.
- Healthy controls:Chronic use of any anti-inflammatory drugs, drugs that directly affect components of 5-HT signalling and any other disease or condition that may interfere with study assessments as judged by the investigator.

Anyone with Crohn's from Canada in here? They take UC patients as well. This may be your lucky day/lucky post/lucky thread.
 

Bombadil

Banned
I have some questions regarding this serotonin imbalance business.

So this hypothesis states that an elevation of serotonin levels and a decrease of dopamine could be the CAUSE of Crohn's and UC?

Is this only cause or are the other genetic markers involved? Does an overly-aggressive immune system still play a part in these diseases? Doesn't the immune system attack the intestinal tissue?
 

jimi_dini

Member
I have some questions regarding this serotonin imbalance business.

So this hypothesis states that an elevation of serotonin levels and a decrease of dopamine could be the CAUSE of Crohn's and UC?

It's not a hypothesis. It's a case study. The patient involved was not in sustained remission for 22 years and now he is because of that treatment.

It seems there is an imbalance, yes. But it doesn't need to be serotonin higher than dopamine (it was so in that case study). It may also be the other way round. It's not even the same level of imbalanace all the time. This needs to get figured out per patient and then treated to get into balance again. Of course, it's not known if it works for every patient. We just know that it worked for that one patient with severe Crohn's. The good thing is that such treatment doesn't require new special medicine.

They also say that it may be the cause for UC as well. I definitely know what one of the causes of UC is missing phosphatidylcholine in the colon mucosa. If the imbalance is confirmed to be true for UC (and treatment also works), it may be the cause of why there is less phosphatidylcholine in the mucosa of UC patients.

Is this only cause or are the other genetic markers involved? Does an overly-aggressive immune system still play a part in these diseases? Doesn't the immune system attack the intestinal tissue?

At least in case of UC I know that there is no "overly aggressive immune system" (*).

Doctors told me EXACTLY that and then gave me more and more immunosuppressants. And after they gave me almost everything there is, it still went on and went worse. Then they told me that I would need to get a colectomy. And then after getting clinical trial gastro-resistant phosphatidylcholine, this "overly aggressive immune system" calmed down by itself. Took 4 months back then. And now it's 3 years later. My colon is here and it's doing fine and I also didn't have any flareups at all.

In case of UC, the immune system just attacks bacteria that get a bit into the colon mucosa, where they should never be - in fact it's supposed to be sterile. Any healthy human would get the same inflammations, if you put bacteria at that place every day. The immune system can't win in such situation, that's why it gets worse and worse. And normally you just get medicine that blocks the immune system, which means that medicine goes against symptoms, not the actual cause.

Mind you - it makes sense to block the immune system as immediate reaction, because the bacteria don't do as much damage as the immune system does to the mucosa. But they don't treat the cause at all, which means the bacteria won't stop being there. It's sort of like blood poisoning treated by immunosuppressants only.

If that case study is right, Crohn's disease is also caused by bacteria that get where they don't belong. Which then triggers the immune system. Which would mean that the immune system wouldn't be at fault for Crohn's as well. Which would be really great news.

(*) it may get overly aggressive after years and years of getting attacked + blocked by medicine.
 

Bombadil

Banned
It's not a hypothesis. It's a case study. The patient involved was not in sustained remission for 22 years and now he is because of that treatment.

It seems there is an imbalance, yes. But it doesn't need to be serotonin higher than dopamine (it was so in that case study). It may also be the other way round. It's not even the same level of imbalanace all the time. This needs to get figured out per patient and then treated to get into balance again. Of course, it's not known if it works for every patient. We just know that it worked for that one patient with severe Crohn's. The good thing is that such treatment doesn't require new special medicine.

They also say that it may be the cause for UC as well. I definitely know what one of the causes of UC is missing phosphatidylcholine in the colon mucosa. If the imbalance is confirmed to be true for UC (and treatment also works), it may be the cause of why there is less phosphatidylcholine in the mucosa of UC patients.



At least in case of UC I know that there is no "overly aggressive immune system".

Doctors told me EXACTLY that and then gave me more and more immunosuppressants. And after they gave me almost everything there is, it still went on and went worse. Then they told me that I would need to get a colectomy. And then after getting clinical trial gastro-resistant phosphatidylcholine, this "overly aggressive immune system" calmed down by itself. Took 4 months back then. And now it's 3 years later. My colon is here and it's doing fine and I also didn't have any flareups at all.

In case of UC, the immune system just attacks bacteria that get a bit into the colon mucosa, where they should never be - in fact it's supposed to be sterile. Any healthy human would get the same inflammations, if you put bacteria at that place every day. The immune system can't win in such situation, that's why it gets worse and worse. And normally you just get medicine that blocks the immune system, which means that medicine goes against symptoms, not the actual cause.

Mind you - it makes sense to block the immune system as immediate reaction, because the bacteria don't do as much damage as the immune system does to the mucosa. But they don't treat the cause at all, which means the bacteria won't stop being there. It's sort of like blood poisoning treated by immunosuppressants only.

If that case study is right, Crohn's disease is also caused by bacteria that get where they don't belong. Which then triggers the immune system.

This sounds like good news.

I also want to ask, if somebody happens to be depressed or suffering from an anxiety disorder, could this cause an imbalance in serotonin/dopamine levels? Or is the the depression/anxiety disorder caused by the imbalance?

If this imbalance can be caused by depression, would that mean that anybody who is depressed and gets a bacterial infection in their intestines could potentially be afflicted with colitis or Crohn's?
 
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