Ulcers, strictures - not Crohns?

Hi all - I was diagnosed with Crohns and was scheduled to start on Humira. Went to speak with an expert on biologics and he looked at my labs and questioned the diagnosis. New barrage of tests including a Crohns test that was never given and yesterday was told it's not Crohns, not cancer. Tests do not support Crohns. Have "nasty ulcers" in the small bowel--- strictures --- history of aspirin use but not recent. He is giving me Entacort to heal the ulcers -- gallbladder working at 20% and gallstones. Has anyone ever heard of ulcers and strictures that are NOT Crohns? :ywow: I did use aspirins in an irresponsible way for years but the last 10 years, using tylenol product for my migraines. I'm hopeful but...reluctant to buy it. He mentioned a 6 month window and I've probably taken aspirins...maybe 2-4 per 3 months average. I'm not sure what else could cause ulcers but I doubt its the aspirins if they are looking at last 6 months.....what else could it be? I'm grateful I'm not on Humira starter kit....he told me to throw it out. Any thoughts on that?

Appreciate any feedback. Thanks all.

I'd get another opinion. I had a blood test for Crohn's and it was negative, but I definitely have it (scope/biopsy confirmed multiple times). Were your biopsies negative as well?

yes, biopsy negative, immuno blood test negative, inflammation markers normal.
I have my doubts...but I have chronic constipation....and not much pain other than when I eat big meals due to the strictures. I don't know what to think. This physician is considered expert in this area.

Hida Scan, upper GI scope, colonoscopy, 2 small bowel follow throughs, ulrasound, CT scan, camera pill and many blood tests.

He's saying 2-4 aspirin every 3 months is causing ulcers?

Were they able to biopsy the ulcerated area? If so, what did the actual findings say?

I notice you have rosacea. Have you been tested for small intestine bacterial overgrowth? There is a strong correlation with those two. (Source)

good points. Something showed up in 2 xrays in the terminal illeum area --- yet further testing (xray small bowel) -- they pushed and prodded to get a clearer xray and it was normal. They biopsied the terminal illeum and it was negative. I think the jury is still out on that area. I have a history of antibiotics for rosacea -- the bacterial overgrowth makes sense. I am now on Align which is supposed to help that and I feel better. All my tests came back negative for Crohns/cancer/immuno disorders. Yet I have strictures and ulcers. I'm taking steroids now to heal the ulcers. I don't see how it can be aspirin related. I believe I read that bacteria issues can cause ulcers as well. Do you know if that is true? I also have a habit of taking tums at night while in bed. I wonder if that could have caused them rather than aspirin which I rarely use. I don't know whether to be happy about the non-crohns decision or not. And not sure what good I can do with this Humira which is still in tact. Seems like no one wants to get involved with donating that so... hate to throw it out.

Where exactly are the strictures and ulcers?

I'm not aware of SIBO or antacids causing ulceration and stricturing but infections like intestinal tuberculosis and yersinia can.

Did they already give you the mantoux test for TB before you were scheduled to go on humira? It's needle test right under your skin.

I don't get how you have nasty ulcers and nothing shows inflammation in your blood.

there seems to be a mayo clinic where you live. I dont know your situation or mayos but maybe this is a great place for a second opinion.

http://www.mayoclinic.org/crohns/?mc_id=comlinkpilot&placement=bottom

clsparks said:

yes, biopsy negative, immuno blood test negative, inflammation markers normal.
I have my doubts...but I have chronic constipation....and not much pain other than when I eat big meals due to the strictures. I don't know what to think. This physician is considered expert in this area.

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Some things make no sense, if you have strictures they're either..caused by inflammation or caused by fibrosis. If they are inflammatory strictures it should show in your blood, otherwise it's fibrosis.

I just reread your very first Your Story thread.

Out of curiosity, have you been evaluated for Celiac Disease at any point in this journey?

Celiac negative. TB negative. Can you give me more data on fibrosis? I'm not familiar. This is my second GI -- insurance won't cover Mayo Clinic or I'd go there. It's really helpful to speak with people who are familiar--- I will be armed when I go back in 6 weeks. I may have misunderstood his specific comments on the labs......but he said they were all negative for Crohns. And not cancer.

corrected msg

Just read the explanation of yersinia. That is certainly worth looking into. I took prilosec for 7 years - chronic diarrhea and I read this med caused absorption issues so I stopped. So now I have a long history of chronic constipation...sometimes impactions.....blockages at what I now know is the strictures ----combine these issues and it can be a battle to keep the bowel healthy. The continual use of antibiotics for rosacea has certainly caused issues I'm sure. I felt immediately better with probiotics, Myralax daily, and smaller meals - and no heavy oily meals my gallbladder is @ 20%. At night my stomach is distended and feels a little "blocked" but no pain. It's gone in the morning. BMS are daily and regular now with all the supplements. I am not familiar with the fibrosis condition. Can someone elaborate?

In younger years, suffered with migraines and had a habit of taking Excedrin with Diet Cokes on an empty stomach for years.....I see where this can cause strictures and am comfortable wih that. But I used a Tyelenol product now and very vew aspirins over the last 6 months so I don't understand the ulceration....unless it is bacterial. I read "strictures can cause bacterial overgrowth." THAT makes sense to me. YOU?

clsparks said:

Celiac negative. TB negative. Can you give me more data on fibrosis? I'm not familiar.

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Well, there are two types of strictures.

One is caused by active inflammation, the inflammation process makes the width of the intestine smaller, because lots of mast cells and other cells come to the rescue and try to fix whatever mucosal barrier was broken down.

Fibrosis on the other hand is something completely different, fibrosis is when so much scar tissue and collagen has formed that it actually changed the shape of the organ.

Mind you, they both can exist at the same time, you can have both inflammatory and fibrotic strictures.

(there is a third type, although I don't know if that's classified as a stricture everywhere, when an organ has two sides stuck together in certain parts, because the walls made connections, this happens in CD also sometimes)

thank you, Kiny. I did not know that. I have no clue what I have. I saw a couple of quick photos.....the tissue was pink, the opening was small. I saw another that had a thin white stripe running across it...scar? I hope my doctor knows what he is doing, because I'm totally confused by the whole thing. I just don't want to throw the Humira away and find out 6 months later, that I ..well..do...in fact....have Crohns.

Adding: the CT scan and small bowel follow thru only showed strictures in the terminal illeum. But I have other strictures throughout the jejuneum mostly...I'm thinking "not changing shape of bowel" or it would have been picked up on one of those exams. Would you agree?

clsparks said:

Adding: the CT scan and small bowel follow thru only showed strictures in the terminal illeum. But I have other strictures throughout the jejuneum mostly...I'm thinking "not changing shape of bowel" or it would have been picked up on one of those exams. Would you agree?

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It's really hard to tell, especially on a CT. An MRI is better at picking up the difference, but they still often can't tell. The only sure way to know is if you go on anti-inflammatory drugs and the strictures get better, then you can say it was an inflammatory stricture.

This relates to my question, if the strictures are inflammatory, then inflammation should be seen through the blood test.

I was told all tests negative for crohns so....I don't recall having an MRI but I will suggest it next round. I am taking entacorte - is that antiinflammatory drug. i was told steroid and I don't know much about all this yet. I have another question - can you ask to see your test photos, xrays, written reports? Are they obligated to let you see? I've heard that is the case --- I'd like to see for myself what is happening inside my body and what the xrays docs have written.

They should be so forward to show you if you want. I have talked many times to the person taking MRI of people, reason I know some of this stuff is because I spent a few hours talking to him. People who take the shots are usually not just doctors but specialists who know how to interpret the pictures.

If entocort works it will lower inflammation, if there is less constipation you can attest that to the inflammatory stricture subsiding since the wall will lose it's thickness and go to a normal state again.

On the other hand if the stricture is fibrotic, entocort will do nothing, although they are hard at work to fix fibrosis, since lung fibrosis is a disease on it's own.

Thanks for taking the time to explain to me. I appreciate it.

I also want to tell some more things about strictures if it interests you. A fibrotic stricture forms in some people after continous inflammation, the scar tissue will heal, break down, heal, break down, heal, break down, and that eventually leads to fibrotic stricture for some.

Another element in this is the way it heals, there was reason to believe infliximab and humira caused fibrotic strictures, but nowadays that is more so blamed on corticosteroids and the damaging process instead. There is actually reason to believe that TNF-blockers might lessen stricturing. This is still a topic of debate.

I am interested in anything and all information you can share with me that educates and informs. I've had some bad doctors and the more informed you are, the better you are to protect yourself from bad patient management. Can you clarify-- entecort is a corticosteriod? Is TNF blocker an immune suppressant?

David said:

I just reread your very first Your Story thread.

Out of curiosity, have you been evaluated for Celiac Disease at any point in this journey?

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negative on Celiac FYI

In a way TNF blockers are an immune supressant, TNF blockers are biological medication, know under the brand names Remicade (infliximab) and Humira, they block TNF-alpha, TNF-alpha is a cytokine involved in the inflammatory process. TNF-alpha blockers were orginally used to treat people who have uncontrollable inflammation from an infection (mind you, crohn might be an infection, depending on your opinion).

They have another function that is less dicsussed though, Remicade (not sure about humira) is able to cause apoptosis of macrophages, this is very relevant in crohn's disease, since it's very likely the macrophages are causing the inflammation through TNF-alpha release, it might explain why remicade is more potent than some other TNF blockers. And in a way it's an immune stimulater.

Entocort is a corticosteroid yes.

QOTEnowadays that is more so blamed on corticosteroids and the damaging process instead. There is actually reason to believe that TNF-blockers might lessen stricturing. This is still a topic of debate.[/QUOTE]

so making sure I follow....I"m only taking steroids for 30 days to lesson the inflammation so it should not make the stricturing worse? If it's not Crohns, do you think he might start me on a TNF blocker to reduce stricturing even so? Is that probable?

By the way, you lost me at apoptosis of macrophages..ha

clsparks said:

so making sure I follow....I"m only taking steroids for 30 days to lesson the inflammation so it should not make the stricturing worse? If it's not Crohns, do you think he might start me on a TNF blocker to reduce stricturing even so? Is that probable?

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I can't say if the stricturing will get worse or not.

I'll say it like this. Fibrotic stricturing is the result when a wound doesn't heal how it should, it can happen when a wound is opened multiple times or when a wound heals much too fast.

When TNF blockers were first used, doctors clinically saw more stricturing than they did in other patients, but many of those patients also had used corticosteroids. There was reason to believe the cause were the TNF blockers or the corticosteroids, since they both induce rapid mucosal healing.

But when MRI evolved they noticed that it might not be the TNF-blockers but the corticosteroids, biologically speaking (in vitro), the TNF blockers have the capacity to lessen stricturing.



As far as using TNF blockers if you don't have crohn to lessen stricturing. No, that won't happen, because there is way too much debate still going on about the stricturing in the intestine to know what actually causes it. Not to mention that TNF blockers are very heavy drugs that they won't give anyone without knowing it is in fact Crohn.


The research regarding lung fibrosis is far more evolved, it's a really sad state of affairs that there is so little focus on fibrotic stricturing in crohn's disease, nontheless, people with fibrotic stricturing will down the line benefit from research into lung fibrosis (the research is targeting TGF-beta1, involved in the stricturing / collagen process, and is looking at ways to speed up renewal of cells to downregulate the collagen).

There are some herbs that inhibit TGF-beta1 in mice, one of them is the Scutellaria herb, another is turkish rhubarb. Mind you, they were given in much higher doses than healthy, they were given at 150mg/kg. Nontheless, those herbs might be able to halt or reverse fibrosis by inhibiting TGF-beta1.

You truly have done some research on this subject. Thank you so much for sharing some
really good info with me.

I should change my name to Tonya two-time....I always have another thought.

Is there a good place to research this type of information other than the internet? I can get the basic statements regarding Crohns etc. but basically the information repeats itself all over the net. I have seen nothing like you have just shared with me.

Hey, if your still not happy with your current doc and want another opinion, Im seeing Dr.Sninsky at Digestive disease in Gainesville. I really like him and the doctor I work with sees him as well. so if he trusts him....

There's many online journals where people can find info, the first few weeks were very confusing for me, but people keep learning new terms from studying their disease and many here know a lot about crohn. (I knew absolutely nothing about my disease when I first got it)

There's journals that charge money and there's journals that do not. If you go to uni or know someone who goes to uni, most uni buy the journals and have special privileges on those sites. There are many people against paid journals though, since publishing yourself costs a lot of money, but because these sites have built up a reputation because they are peer reviewed, many still publish there, but protest them also: http://thecostofknowledge.com/


Anyway, there's free sites too, pubmed indexes almost every article that has some merit, it will have an abstract, usually it will have a free full article, and if it does not a bit of google-fu will bring it up or just ask someone who has access you know.
http://www.ncbi.nlm.nih.gov/pubmed/ Type in that searchbox whatever you want and you will get a huge amount of literature on the subject.

People post many articles in the multimedia section of the site too.

Aspirin and NSAIDs (aspirin is a type of nsaid) can cause ulcers. They mostly occur in the stomach and duodenum but also the small bowel. If the ulcers get big they can cause stricturing due to scarring. NSAID also can cause a gut enteropathy where the bowel becomes inflamed and loses protein.

There is also a specific stricture caused by NSAIDs particularly diclofenac/voltarol and this is a diaphragmatic stricture- this has a very specific appearances on scopes and X-rays so they probably would have said if it was this type.
Take care.

lager87 said:

Hey, if your still not happy with your current doc and want another opinion, Im seeing Dr.Sninsky at Digestive disease in Gainesville. I really like him and the doctor I work with sees him as well. so if he trusts him....

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Thanks! Gainesville is a drive but if I need a second opinion, I will certainly keep that contact. Appreciate the information!

littlemissh said:

Aspirin and NSAIDs (aspirin is a type of nsaid) can cause ulcers.

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I took aspirins for many years for migraine but over last 10 years, mostly used fioricet - a tylenol product. I'm not sure I buy the aspirin theory he stated there was a 6 month window of concern. Not much aspirin in that 6 month period. Prior doctor said definitely Crohns - this doctor said all tests were negative for Crohns. OY.:ybatty:

Thanks again, Kiny. I'll dig a little deeper for some better articles.

I would agree with you. NSAID very occasionally cause strictures. For you to have several strictures and ulcers it seems much more likely to be crohn's.