Rentahamster
Rodent Whores
As odd as it sounds, you may want to look into fecal transplants.
As odd as it sounds, you may want to look into fecal transplants.
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.
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?
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".
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".
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.
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".
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.
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.
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?
So, he found a cure for UC? And how must one consume the phosphatidylcholine?
That is really interesting, I wonder if this would apply to CD too.
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.
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.
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.
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.
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.
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'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.
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?
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.
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.
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.
Interesting stuff
The next time I speak to my (German!) hospital consultant I'll definitely ask him about this.
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.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.
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.
I know serotonin is usually linked to happiness and well meaning, but what does they study conclusion mean?
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.
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?
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.
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?
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.