Share Facebook
Crohn's Disease Forum » Your Story » Lost Faith in Doctors, Doubting I have Crohn's


03-28-2012, 03:40 AM   #1
PomeSutton
 
Join Date: Mar 2012
Lost Faith in Doctors, Doubting I have Crohn's

My Situation

Ok im new to this site but im going to skip most my backstory in hopes of keeping this as short possible so more people will read(though i hope understand this isnt something that can be summed up easily so please read).

I am confused and extremely frustrated at the moment and am in desperate need of help.

So I grew up in England and was completely fine and healthy as a child. 6 years ago i moved to New Zealand and about 2 years after that i was diagnosed with crohns disease so the last 4 years of my life have been a struggle to say the least. I was put on steriods and other drugs though they never seemed to help me very much at all if anything making things worse giving me terrible acne and the moon face.

A bit less than a year ago i managed to get myself onto a drug called humira and i feel very lucky for that as it has improved things for me quite a bit but i am still nowhere near where i would like to be especially having recently started university.

After recent bloodtests my doctor has told me there is barely any evidence of inflamation, yet i still get ridiculous amounts of bloating and gas and i can clearly see im not digesting my food properly. I sometimes feel pressure in my bowel usually in the upper left of my bowel just under my ribs which feels like i have an obstruction. Because of this i am always exhausted constantly, i almost physically cant get up in the morning for lectures its that bad, i cant concentrate and even have problems with memory.

I also have a constant cough, like i can always feel something in the back of my throat, (one doctor even had the nerve to try and tell me this was force of habit), aswell as having sinus congestion. I'd also like to note that i get nosebleeds ocaionally and get terrible hay-fever. I also never really got blood in my stools and i used to get joint pain in my lower back.

My Frustration

Ok so thats basically me at the moment, the real reason i am posting this though is because i am begging to doubt crohn's disease is the cause of my problems. It seems to me like crohn's is just the generic thing doctors use to label people with bowel problems when they cant/ are to lazy to figure out why.

I refuse to accept that my imune system is attacking my own body. Wouldn't it be a whole lot more lodgical that i actually have some sort of bacterial or viral infection that my body is trying to fight off. My original diagnosis was just one sidmoidoscopy and then apparently that was it i had crohn's disease. Is crohn's the only thing that can cause bowel ulcers? surely not. They didnt even seem to check for anything else. Do doctors even care about making sure they get the right diagnosis or do they just label you with the most likely thing, in this case crohn's which isn't even really a disease. Crohn's just means sorry we dont know whats causing ur problems ur just going to have to deal with it for the rest of ur life.

I hope ur still with me at this point, because heres the part where i need your help.

Like i said i am seriously doubting i have crohns now for a number of reasons and it seems like i am never going to get anywhere with any doctor so i would like know i anyone has any suggestions or has been misdiagnosed with crohns themselves, (if so what with). After seaching the internet one thing that really caught my eye was Candidiasis as it seemed to fit my symptomsso well, so whats ur opinion on this and are there any other bacterias or infections it could be.

Again i would like to know about any other possibilities.

I am in desperate need of answers. Telling me my imune system is attacking my own body all of a sudden for some unknown reason just doesnt cut it for me.

Possible Causes / About Me

Ok here some things i think may have been causes:
  • I used to eat riduculous amounts of salt and heinz tomato ketchup
  • We stopped in Hong Kong on our way to NZ where I was very sick the whole time we were there and never saw a doctor about it.
  • Around the time i got diagnosed and before we used to eat raspberries that were going next to a field of cows and a river, without washing them.
  • Just that i moved to the other side of the world.
  • Before getting diarrea i remember being very constipated for a while getting wierd slime out my anus even when i didnt go to the toilet
  • The house wall-mounted insect-repellent stuff

I can make a complete list of all the symptoms ive ever had if it helps.
Also not sure if this is the right section to post this in.

Thanks for listening any reply would be greatly appreciated.
03-28-2012, 05:03 AM   #2
handle
Senior Member
 
handle's Avatar
 
Join Date: Feb 2011
Hi PomeSutton,
Welcome to the forum. I understand your frustration. It is a difficult time for you.
The main illnesses where ulcers are found in the intestines are I.B.D's and cancer. Although your doctor found limited inflammatory markers from your blood test, that does not mean that you don't have Crohns, or that there isn't still some disease activity in your intestines. A colonoscopy with biopsies would be useful to verify your condition.
A diagnosis of Crohns Disease is not a "generic thing doctors use to label people with bowel problems when they cant/ are to lazy to figure out why." Most specialists are reluctant to give a diagnosis of Crohns, and require proof from biopsies, visual inspection, blood test and other findings. There may be a few out there who jump the gun, but I would think them a very small minority, due to the seriousness of the condition, difficulty and expense in treatment.
It may well be that you have some other issues also present - such as food allergies or a sinus infection. That needs investigation.
It is possible that there is a bacterial component to the disease, and that there are environmental and genetic issues also at work. That will no doubt be clarified in time as there is considerable research being done. The current treatments seek to tackle the immune response so as to minimize the physical damage that can lead to surgical interventions. As more is known, the treatments alter.

I am glad they started you on Humira, which is a great tool in fighting the disease. Often, due to expense and reluctance to use these drugs, much damage is done to the intestines while people seek out other avenues.
You might want to check your levels of B12, Iron, vitamin D and protein (albumin.) These are commonly low with poor nutrient absorption, and can be responsible for lack of energy and susceptibility to infection.

Good luck!
03-28-2012, 05:56 AM   #3
PomeSutton
 
Join Date: Mar 2012
Hey Handle thanks for the quick reply,
I realise that reduced inflamatory markers doesnt mean that i dont have crohn's. What i was trying to say was that despite my inflamation being very low, i am still getting ridiculous amounts of bloating and gas and am clearly not digesting food properly and i dont understand why. I recently went to a nutritionist who told me that bloating and gas was caused primarily from bacteria, so this is one of the reasons im starting to think i have some sort of infection, or is my bowel just permanently damaged now from what it has been through.

I do realise that it is a strong possibility that it is just crohn's but i just wont be happy until ive explored all other possibilities which is something i dont feel like my doctors have done.

My iron levels are apparently good and i am curently taking vitamin D pills yet i still feel just as tired.

It just seems more lodgical that my immune system is trying to fight off some infection than just fighting itself especially with the growing number of people with crohn's. Are there not antibiotics or other drugs you can take that would clear out any possible infection. It just seems wrong that they cant tell me the cause yet there so sure its Crohn's.

Also do you now anything about candida overgrowth or H. Pylori.

Thanks
03-28-2012, 07:53 AM   #4
handle
Senior Member
 
handle's Avatar
 
Join Date: Feb 2011
Your thinking is quite sensible.

Even low level inflammation can cause a lot of digestive issues, which is why the illness is so problematic. Until it settles completely, people suffer, which makes treatment choices extremely important.
Low level inflammation can be hard to detect, and the illness waxes and wanes.

H. Pylori (stomach infection) can be diagnosed with a breath test.
Candida Albicans (which can be a cause of bloating etc) is usually found via stool tests. There is a saliva test too, but some say it is unreliable.

There are some who respond well to antibiotics and combinations of antibiotics, however there are side-effects, and the condition often returns after the treatment is ceased.

The tell-tale signs for Crohns are well understood and documented (apthous ulcers, granulomas, bleeding, patchy involvement throughout the G.I tract, thickening, narrowing etc,) the pathology is unmistakeable once found, and the symptoms are well known, even if the cause itself is yet to be fully determined. Some people can take a long time to get properly diagnosed even though they suffer badly, as the illness can at times present a less identifiable footprint. That's the way it is at the present time.

Have you had a colonoscopy?

I would still check all the vitamin and mineral levels (esp. B12) and even electrolytes if you have a lot of diarrhea.
There are several options that can help with the bloating and digestion issues such as probiotics (be careful as some make things worse), digestive enzymes, elimination diets, and numerous other alternatives that people have found helpful - though each person seems somewhat unique.
You can look through this site for loads of information.

All the best, PS.
03-28-2012, 08:01 AM   #5
PomeSutton
 
Join Date: Mar 2012
I wouldn't say i get diarrhea at the moment its more just broken up and not fully digested any thoughts on that?
03-28-2012, 09:23 AM   #6
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
Hi there,

I have not been dx with crohns yet, I am still going through the motions. I read your story and it is very interesting. I agree with you on one point being that GI docs only know of three things that can affect the bowel, IBS, cancer, and IBD. DOes that mean that there is nothing else it could be? NO. It could be any number of things causing your issues. Look at this way. When you get a infection, the area gets inflammed right? Well any number of things can cause your intestines to bleed, get inflammed etc... Such as various viruses and bacteria, and even fungi possibly.

When your doctor dx you with crohns disease, did he get biopsies that actually confirmed this or did he go just by looks? I have alot of health issues myself( inflammatory issues). I have interstitial cystitis which is a debilitating bladder disease that inflames your whole bladder lining. These so called specialists that treat this disease say it is not a infection at all. Well after suffering for three years I developed a infection that was able to be cultured and was put on antibiotics and low and behold my bladder got better. They use to think that stomach ulcers were caused by stress! Then years went by and some scientists finally discoverd the are caused by Bacteria. It took them years to figure this out. So I always keep a very open mind in terms of what doctors tell me. I mean IBS for instance is a made up name by gastroenterologists that basically means " I have no clue what the hell is wrong with you". Putting a name on something sounds better than admitting you are clueless!!

I am still going through this whole journey with my recent intetsinal pain and issues. I am likely going to have to take some tests to see what is up. I am doing this for myself so that I can get an idea of what is going on. I will be honest, I have been chronically ill with many issues for the last 9 years and have seen a slew of doctors(including gastro docs( at mayo clinic as well). I gotta be honest, and I have seen some of the very so called " top" doctors. None of them knew anything. I cannot even begin to tell you how many doctors I saw that were completely clueless. I think perhaps I found about 3 good ones out of the dozens I have seen in the past 9 years for different issues. I do not take to heart ANY diagnosis I get. I mean bottom line is, you know your own body and how you feel. I guess you gotta go with what makes you feel the best. Have you tried any natural doctors? There definitely is a reason for crohns disease. The medical profession right now seems to think it is autoimmune, and it likely is, but the very vital question here is " what is causing the immune system to disfunction"??? A virus or a bacteria perhaps, most likely. Bacteria are becoming more and more resiliant. They are actually finding ways to evade being detected. For instance, researchers are finding out that certain bacteria that cause bladder infections are using bio-films to protect them from being killed off by antibitoics and even from being detected. I am assuming bacteria in the gut can do the same. These bacteria are ruthless and are evolving way faster than we are.

Anyhow, sorry for the long speech. I just wanted to share what I think. I agree with you, there is more than meets the eye here. Unfortuntely, doctors are not into researching a cuase. They just want to treat with drugs and keep you coming back. If they found a cause and a cure, well then they could not make any money. It is really sad indeed....
03-28-2012, 09:53 AM   #7
Grant
Senior Member
 
Grant's Avatar
 
Join Date: May 2011
Location: United Kingdom

My Support Groups:
PomeSutton, Mis-diagnosis is seemingly something we all run the risk off and its usually IBS that gets the blame. Its happened to loads of us on here.
With ref to what your passing as broken up & not fully digested, that sounds like whats passing through isn't being broken down properly as its transit is speeded up somewhat, classic crohns IMO. You may not have a particularly active CD as in not the full on diarrhea.
BTW that weird slime you passed is almost certainly mucus, another by-product of Crohns.
I hope you haven't got it obviously but really you need @ the very least as handle say a colonscopy & biopsies to confirm.
Without tests like that I dont see how they said you have Crohns though.
Good luck
Grant
__________________
1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
Currently on:
Inflectra
Questran
Loperamide
Calcichew
Pentasa 4gm daily
Daily Multi Vitamins
3mthly B12 Jabs
03-28-2012, 10:26 AM   #8
handle
Senior Member
 
handle's Avatar
 
Join Date: Feb 2011
Ihurt - Both Marshall and Warren, who discovered that the bacteria H. Pylori was responsible for stomach ulcers, were doctors. Marshall became a researcher in internal medicine, and Warren was a clinical pathologist. There are many doctors, and surgeons, who are heavily involved in medical research, searching for answers.
03-28-2012, 11:18 AM   #9
carrollco
Senior Member
 
carrollco's Avatar
 
Join Date: Dec 2010
Location: Grass Valley, California

My Support Groups:
This is probably a very simplistic example, but are you watching your trigger foods? If I cut out all my trigger foods, i.e., dairy, beans, fats, sugar, within a few days, the bloating and gas goes away and I feel wonderful. If I then introduce one of those foods, the gas and bloating comes right back.

Although I try to be good most of the time, I do slip, and when I do, I pay for it. You might want to keep a food journal until you have a convincing diagnosis.
__________________
Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
03-28-2012, 11:29 AM   #10
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
Yes, your are correct. It is just unfortunate that there is just " not enough" research being done. Whether it be because there is not alot of money to do the research or just not enough doctors or researchers out there really researching, maybe just a few. Also, when Marshall and Warren discovered H-pylori was the cause of ulcers, believe me, it took them time to convince the medical field out there of this, no one wanted to accept this answer. Kind of makes you queestion"why"??? The only reason one could think of is "money"! After seeing so many peoples ulcers clear up after treatment, well then the medical field really had no choice but to recognize H-pylori as the causaitve bacteria in the development of gastric ulcers. I just wish there were more doctors getting into the field of medicine with real interest of diseases and finding the cause, but sadly many if not most go into the profession and find it easier to go with the flow of just "diagnose and treat". And alot of times their diagnosis's are wrong. I was diagnosed with having Lupus by one rheumatologist and then diagnosed with scleroderma by another. Guess what, I have neither of these diseases! It took me me getting three opinions by three different specialists ( all of them rheumatologists I might add, and supposed top guys), and finally found one who really looked into things and told me I did not have these things. Grant it I am sick and have been for 9 years with all sorts of crap and the doctors I have now are pretty good. Chronic illness is very hard to diagnose and even treat sometimes, so I know it is not easy for doctors either. But I just think a doctor is absolutely wrong to slap a diagnosis on someone without being 100% sure you have got it. And this happens alot unfortunately. I am sorry if I come off as negative regarding the whole medical filed, it is just that I have seen horrible doctors( many). My mom died and I saw how horrible the doctors treated her. Now that I am sick and my dad after seeing what I have been through with doctors, he will not even set foot in a doctors office anymore. When you are chronically ill, you unfortunately end up having to see many doctors and that is when you realize there are soooo many bad ones out there.....

Bottom line, you have to be your own advocate in terms of your own healthcare and do what you think is right for you. I think it is great that there are borads and forums where people can share their experiences and help one another, and just get different ideas. This is a great board with alot of great people on here.





Ihurt - Both Marshall and Warren, who discovered that the bacteria H. Pylori was responsible for stomach ulcers, were doctors. Marshall became a researcher in internal medicine, and Warren was a clinical pathologist. There are many doctors, and surgeons, who are heavily involved in medical research, searching for answers.
03-28-2012, 12:34 PM   #11
GFinDC
Member
 
GFinDC's Avatar
 
Join Date: Mar 2012
Location: Washington, DC
Hi PS,

You could explore the possibility of celiac disease also. Celiac disease is the only autoimune disease where the causitive factor is known, a reaction to gluten. Celiac disease generally affects the small intestine though, not the large intestine. but there is no reason you can't have both celiac and Crohn's. That happens in some people.

Other things to consider are casein sensitive enteropathy and Lyme diseaae. Both of those can cause GI tract problems. Casein is a protein in cow dairy.

Parasites are another possibility as you stated.

H.Pylori can be a definite problem, low stomach acid is associated with H.Pylori. Low stomach acid can lead to poor digestion of foods and infection with unhealthy bacteria or gut critters (parasites).

Alcohol is also a bad thing for digestive health and may be something to try eliminating.

You really do need to do your own research and be your own health coach, as most doctors don't have a lot of time to spend on individual patients these days. Plus with the insurance issues they are likely to prescribe the safer alternatives rather than risk an unusual diagnosis. None of them will have the time or interest to follow your symptoms like you can.

By the way IBS is short for "I be stumped" .
__________________
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Celiac disease, (not Crohn's), thyroid cyst and nodules, Lactose / casein intolerant. My current bad list is: gluten (wheat, barley rye and oats), dairy, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, nightshades (tomatoes, peppers, potatoes), alcohol, and hard work. have a good day! :-) Paul
03-28-2012, 08:46 PM   #12
PomeSutton
 
Join Date: Mar 2012
Hey

Could some please explain to me what could be causing such terrible gas and bloating now that i barely have any inflamation because ive asked to doctors(one being a specialist) and neither could give me an answer.

I dont have celiac disease according to a test I had done, though i remember even when i was quite bad i would sometimes miraculously get like a normal stool in between horrible and painful Diarrhea so maybe some sort of food allergy isnt out of the question.

Ive had stool sample done that came up with nothing though i dont know what exactly they were looking for.

Im not a big drinker of alcohol, mainly cause I just cant handle it.

The only thing i try to avoid is spicy food as nothing else seems to make a difference.

In reply to Grant i mention the slime/mucus because i had mucus in my stool after that which was nothing like the slime/mucus i used to get before getting diagnosed with crohn's, which i would get all the time not just in stools and when i asked my doctor about this he said that could be an indicator of a bacterial infection but idk.

Also i have had 2 sigmoidoscopies i believe and atleast in the first one i know they took tissue samples though i dont think ive had a full colonoscopy.

Can someone explain how they can be sure it is crohn's disease from tissue samples/biopsies as how can you tell the imune system is attacking itself from a tissue sample.

I totally agree and sympathize with you I hurt and I no longer am gonna leave my fate completely in the hands of Doctors. I'm sick of treating the symptoms and not the cause, its just a losing battle. I know they dont know the cause of Crohn's but it seems to me that because so many people get put in this category the cause could differ a lot for different people and with the number of people with crohn's being so big and increasing, i refuse to believe there are that many people out there with there immune systems attacking themselves. I used to think we were so medically advanced but clearly not if we cant even identify what is causing so many people to suffer.

I am interested to know some common things people turned out to have after being diagnosed with crohn's and would especially like to know about Candidiasis and if it is a possibility as the symptoms i saw for it fit me so well, i know the internet can be unreliable cause there always trying to sell something.
03-28-2012, 09:42 PM   #13
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
I also get very bad bloat and gas/belching. I was dx years ago with motility issues of the small bowel. I had this test called a small bowel manometry where they check the perstalisis of the small intestines and it showed that mine was irratic and sometimes slow. The symptoms I got were the extreme bloating belching and feeling full after eating only very little and sometimes nausea.

Oh, I thought I would add, my gastro told me that IBS sufferers commonly have mucus/slime in their stools. I have it in mine too sometimes. Of course there is that whole IBS dx. I mean what is IBS anyways, it just means they dont know.

I posted a thread under the general disscussion section about the brasco broth diet that is suppose to be healing to the gut. I read about this guy named Jordin Rubin who had severe crohns. He went on this diet and has no more issues with his gut. You can even google it, just type in his name. Or just look for the post I left under brasco broth diet. Just an idea, you could read up on it.
03-29-2012, 12:01 AM   #14
PomeSutton
 
Join Date: Mar 2012
Yes I know you get mucus in your stools with crohn's disease but this was all the time not just in stools ie i was just like leaking mucus/slime.
03-29-2012, 06:21 AM   #15
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
My Gastro doc Said that any type of intestinal issue can cause mucus in the bowels, even irritible bowel syndrome. He said it was very common in irritible bowel syndrome. It just means the intestines are not happy.





Yes I know you get mucus in your stools with crohn's disease but this was all the time not just in stools ie i was just like leaking mucus/slime.
03-29-2012, 06:39 AM   #16
RFarmer
Senior Member
 
Join Date: Apr 2011
Location: Tennessee
So, I read the initial post, but not the entirety of the others. Here's what I think:

1) I'm on Humira as well. It works good. But it definitely doesn't fix me 100%. I was on azathioprine for a while, which put me into total remission. It stopped working, and I went to humira. I've been on it for around 7 months, and it still hasn't given me the same remission that the aza did. My inflammation markers are negative. Though I spent two days in the hospital a couple weeks ago.

2) Inflammation markers are not always a 100% test. They measure inflammation (yeah, i'm not even making that up! :P). Just because you don't have inflammation doesn't mean you're still not sick. For example, you could have perforations through your bowel that aren't inflamed or provoking an immune reaction. You could have scar tissue acting as an obstruction.

It's still possible you have CD. If I were in your position, i'd get a colonoscopy just to see what exactly is going on in your gut. No inflammation doesn't mean no disease.

However, I'm not going to undermine what you yourself think. If you believe it's Candida, why not try a Candida diet? IIRC, Candida is a yeast infection. You should be able to atleast moderately treat it by diet. I'm reading up on it now, and the webpage i'm at lists such things as:
Artichokes
Asparagus
Avocado
Beet greens
Broccoli
Brussel sprouts
Cabbage
Cauliflower
Celery
Collard greens

Usually, these kinds of things cause problems for CD patients. So, why not give it a go and see how you feel?

> what would cause such terrible gas and bloating?

bacterial overgrowth, fungal infections. food allergies. Try eliminating milk or gluten, they're common culprits.

> The only thing i try to avoid is spicy food as nothing else seems to make a difference.

I don't want to sound condescending, but it really does take a while to learn what makes you feel good or bad. IDK if you mentioned how long you've been struggling, but I'm 2 years in, and still am surprised to find out things that I thought I was OK with bother me.

>Can someone explain how they can be sure it is crohn's disease from tissue samples/biopsies as how can you tell the imune system is attacking itself from a tissue sample.

They can't. We don't really know what causes Crohn's. We don't even really know if it's autoimmune for sure. HOWEVER, tissue samples that contain high counts of macrophages or white blood cells sort of indicate that the body is trying to fight off something. This would be fine in something like a cut. But it's unlikely that you're drilling holes into your abdomen, and so it doesn't really make sense if there are immune-related cells in your abdomen. Hence why they'd think it was autoimmune/CD.
03-29-2012, 05:08 PM   #17
GFinDC
Member
 
GFinDC's Avatar
 
Join Date: Mar 2012
Location: Washington, DC
Another thing you can try for candida is coconut or caprylic acid. That and low or no sugar or carbs/starch.

Another reason Crohn's may be autoimmune is that immunosuppressers help the symptoms sometimes. So why would they help if it is not autoimmune? Well, maybe there is a reason, but it seems like a positive linkage.
03-29-2012, 06:08 PM   #18
RFarmer
Senior Member
 
Join Date: Apr 2011
Location: Tennessee
Another reason Crohn's may be autoimmune is that immunosuppressers help the symptoms sometimes. So why would they help if it is not autoimmune? Well, maybe there is a reason, but it seems like a positive linkage.
True. Except, there are a bunch of Humira and Remicade related drugs that don't work. We don't really know why, and I guess that's why there are still people out there thinking it has to do something with something else.
03-29-2012, 06:34 PM   #19
carrollco
Senior Member
 
carrollco's Avatar
 
Join Date: Dec 2010
Location: Grass Valley, California

My Support Groups:
That's interesting. Why would an autoimmune suppressor help if it wasn't an autoimmune problem? My husband's doc believes it's caused by a virus--both he and I have autoimmune issues--though he doesn't have Crohn's. The doc said recent research is leading toward a viral infection that 'turns on' the immune system. He added that each person would have to carry a gene to their specific type of autoimmune disease.

I dunno.

I do know, Humira works. I just don't want to be on it forever.
03-29-2012, 06:40 PM   #20
RFarmer
Senior Member
 
Join Date: Apr 2011
Location: Tennessee
Why would an autoimmune suppressor help if it wasn't an autoimmune problem?
That is a VERY good question. I don't know. I don't think anyone does :P But that's part of the reason there's still research going on with regards to viral infections, MAP, etc.
03-30-2012, 07:55 AM   #21
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
It can also be that it is not an overactive immune ssystem, but the exact opposite, an underactive one. this would make sense if crohns and other diseases were caused by a bacteria or virus as they usually attack when your immune system is down. In that case you would have to boost the immune system to help the body fight it.
03-30-2012, 10:24 AM   #22
carrollco
Senior Member
 
carrollco's Avatar
 
Join Date: Dec 2010
Location: Grass Valley, California

My Support Groups:
You don't have to have a low immune system to get a virus. It may be a virus you haven't been exposed to, so you have no immunity to it. The virus attacks, your body goes into defensive mode, your immune system ramps up. Because you have no immunity, your body goes into hyper-drive, setting off the genetic marker for, in my case Crohn's, in my husband's case, Immune Thrombocytopenia.

Good as theory as anything else.
03-31-2012, 09:38 AM   #23
GFinDC
Member
 
GFinDC's Avatar
 
Join Date: Mar 2012
Location: Washington, DC
I am wondering about the skin condition aspects. In Crohns there is skin reaction called Sweets syndrome that happens. David posted a Wiki on it recently. In celiac there is a condition called dermatitis herpetiformis, also a skin condition. Both of them are immune related. I forget what they call it medically, but the GI tract is basically considered skin. There is skin on the outside of ya and skin o the inside of ya. It's all skin though as it is exposed to the outside world. Air and sunshine and rain for the outside skins, and food and other critters on the inside skin (GI tract). In DH (dermatitis herpetiformis) they test for antibodies to gluten in the skin near the lesions.

In Sweets syndrome they test for hmm, I think it was called granulytes (SP)? Another kind of antibody thingie. I am no expert on this stuff. But it's interesting that both Crohn's and celiac have outside skin manifestations as well as inside skin (GI) manifestations. I don't know what that means, but seems like it is a kinda clue thingie.
Maybe it just means skin inside and skin outside are both affected by the same mechanisms. People with celiac sometimes take Pepto Bismol or Marshmallow to sooth their guts. Kind of like putting calamine lotion on a burn or sting.

Well, I don't know what it means, but it probably means something. Needs a smart person to figure it out. I'll just wait quietly in the corner while they do that.
04-01-2012, 05:48 PM   #24
wildbill_52280
Senior Member
 
Join Date: Sep 2009
in regards to your suspician the docs label bowel problems as crohns that they just cant figure out, i think thats what the "ibs" label is actually for, the crohns diagnosis characterizes a form of inflammation by the presence of an immune cell called a granuloma, its a slightly more precise diagnosis then ibs. when i was initially diagnosed with "ibs" then later crohns upon colonoscopy, i thought the same thing, but i was also super paranoid with anxiety.

about their definition of "remission", if you read the clinical definition of remission, there are some features of the diseases that are left out, and not everyone has the exact same symptoms, but most symptoms are fairly similar.

i get the idea that some features are so embarresing to talk about, they are still yet unknown to science, hehe.

best thing to do is keep a journal which can help you identify some problems foods better, note the good days and the bad days, and try to reproduce the good days, while avoiding repeating the bad days. this will make you much more independant of doctors help.i have a system that has allowed me to manage my crohns with fairly good success without drugs for three years now, i have had no surgeries, fistulas, or blockages. but i feel i may have to take drugs soon, not because im getting worse, but because i think i have plateaud with my natural approach, i still learn something new everyday though.
04-02-2012, 02:00 AM   #25
PomeSutton
 
Join Date: Mar 2012
I tell my doctors anything and everything i can think of now im past the point of caring, its not like i have any dignity left with this. I am completely willing to do or try anything that might help.
04-02-2012, 04:05 PM   #26
carrollco
Senior Member
 
carrollco's Avatar
 
Join Date: Dec 2010
Location: Grass Valley, California

My Support Groups:
PomeSutton! That cracked me up. Oh, hee, hee, hee! Dignity? That's a thing of the past. ROFLMAO
04-04-2012, 05:03 AM   #27
VanillaTwilight
New Member
 
Join Date: Apr 2012
Location: Singapore
Hey, I understand your frustrations but if it's been going on for 4 years, I don't think it could be a virus or an infection. Your doctor could be misdignosing you however. Maybe you have UC. Take care
02-02-2014, 08:16 PM   #28
maile
 
Join Date: Aug 2013
Hi PomeSutton,
I happened to read your post and was thinking that you might be right. You said that you thought your health problems stemmed from a bacterial infection and not Crohns. What triggered a red flag for me, was the part where you ate raspberries from a cow field and river without washing it. There is a mycobacterium called Mycobacteria Gordonae that comes from contaminated water, soil and milk. M. Gordonae is associated with Crohns disease. There are antibiotics that can eliminate the mycobacteria. If you had this mycobacteria and if it could be eliminated, the question is would you be cured?.or did the mycobacteria gordonae trigger Crohns, and if that is the case once it's triggered and you have an autoimmunity, is it too late?
I ask these questions because my daughter was tested positive for m. gordonae but the GI dr. I switched to said it wasn't important and started with 6MP. I am trying to book my daughter with an infectious disease specialist to see if she's still is positive for m. gordonae. I want to treat the problem, not continuously treat the symptoms.
How is your health now? What are you taking? Did they ever try to determine if you have a bacterial infection?
Reply

Crohn's Disease Forum » Your Story » Lost Faith in Doctors, Doubting I have Crohn's
Thread Tools


All times are GMT -5. The time now is 02:05 AM.
Copyright 2006-2017 Crohnsforum.com