Only bleeding but no pain - Azathioprine neccessary?

Hi Guys,

Forgive me if I'm breaking any rules as I'm new to forums. I know there are threads on "No Pain" but I couldn't find one closely related. I wish to see if there was anyone with a similar story or advice that anyone can give. A little intro of my issue:

Diagnosis: Ileal Ulceration (2011), Crohn's Disease (2012 via biopsy)
Symptoms: No pain rectal bleeding only (sometimes heavy fresh bleeding)
Medication: None to date.

Since my diagnosis in 2011 I've had a couple of "flare-ups" although I never have any pain whatsoever, I only lose large amounts of blood sometimes to the point where I need blood transfusions.

I have always doubted my diagnosis and I've rejected immunosuppressant treatment because of the worry of its side-effects. At times had up to two years in remission - except 2014 where I've "flared-up" almost 5 times in these past six months. It has now pushed me to decide whether I should accept the treatment (Azathioprine) despite my belief that the side-effects heavily outweigh my single problem of bleeding (drastic none-the-less). Doctor's offer no other option.

My greatest fear is destroying my immune system long term and not living a normal life. I live a normal life except during these bleeding episodes where I have to rest it out till the bleeding stops.

I'd like to hear if anyone has any similar stories or advice on going forward with treatment?

Bleeding is an issue, and if you are having flare ups that often I really think meds are the way to go. I have been on Azathioprine for almost a year now. They monitor you closely via blood tests to make sure your immune system doesn't get too week. Honestly I have gotten maybe 1 cold more than I usually do on this drug.

Something you must consider is that flare-ups damage your bowel over time and you may need a surgery because you didn't take any medication. You can also have a bowel perforation that require an emergency surgery if Mr. Crohn is not under control.

They found my disease after a bowel perforation, 15 years ago. I didn't take any medication until a second surgery (stricture) 6 years later, then I tried Azathioprine and 6-mercaptopurine (but I couldn't handle them, too many sides effects) so no medication for me, anyway I didn't have a lot of sypmtoms when I had flare-ups, and 7 years later another surgery for another stricture.

So you can handle flare-ups like I did, but over time it damages the bowel and it increases the likelihood of a surgery. Maybe you should try Azathioprine to see if you can handle it.

I'm about the start Humira now because anti-TNF is my only option.
I don't like it but I have no choice.

Keep in mi damage from crohns is a given regardless of whether you have pain or not .
If you had an open wound on your arm you know a scab forms which is hard and rigid.
Or squeezed a ballon that has been shaped into an animal -a lot of pressure-so fistulas ( too much pressure ) or strictures ( too much scar tissue ) form.

A lot of drugs are scary on paper ...not just crohns drugs.
Before crohns drugs there was pred and more pred and more pred .
Which resulted in a lot of surgery and shortened life spans for crohns patients.

As far as side effects -
Most worry about catching everything.
Typically not an issue -Ds was dx at age 7 -going without meds was not an option .
He started 6-mp while in the 2nd grade elementary school -No extra colds etc....
We only stopped when it was realized the med wasn't helping enough and some of it was going to his liver ( his liver is fine btw).
He is now on humira plus Mtx and doing great 3 plus years later .
Now real issues still in elementary school and catches less bugs than my other kiddo.


We prefer Mtx less lymphoma risk and no liver side effects .

Good luck

Really appreciated guys! Some reassuring words and brings much confidence in me going ahead with this. I am sincerely hoping that the Doc's have got it right. I just don't know if it's really causing any damage as I don't have any pain. But I just got to accept that five times in six months is no coincidence.

Hope you all the best and continued stability in your issues. I will keep this post updated once I start Azathioprine (maybe in 1 to 3 months) in that it may help anyone else with similar doubts. I just hope that I can handle it and it doesn't cause any more damage.

Good Luck to all.

Safru said:

1. Diagnosis: Ileal Ulceration (2011), Crohn's Disease (2012 via biopsy)
Symptoms: No pain rectal bleeding only (sometimes heavy fresh bleeding)
Medication: None to date.

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Losing blood in stool is a sure sign there is something seriously wrong, it might just be one big ulcer which is active or something else, but there is something. If it is not Crohn's, it is still something that needs treatment.

If you don't believe the diagnosis, you really need to get a second opinion to confirm your initial diagnosis. A biopsy of tissue from a colonoscopy alone can never be the basis for a diagnosis, by the way, many factors are taken into account, the usual ulcerus in active parts, where the active inflammation is located, an MRI, the biopsy result, fecal analysis, detailed blood work etc.

2. Since my diagnosis in 2011 I've had a couple of "flare-ups" although I never have any pain whatsoever, I only lose large amounts of blood sometimes to the point where I need blood transfusions.

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Again, that in itself is very worrisome. If you need blood transfusions regularly, this is not something to look at lightly. Blood transfusions in itself are a serious shock to the system and should be avoided if possible. I have had 3 times in my life where I needed them due to strong anaemia. Thankfully, in the last 3 years I got Crohn's under control, but if this is a chronic issue for you, you really should deal with it sooner rather than later.

3. I have always doubted my diagnosis and I've rejected immunosuppressant treatment because of the worry of its side-effects. At times had up to two years in remission - except 2014 where I've "flared-up" almost 5 times in these past six months. It has now pushed me to decide whether I should accept the treatment (Azathioprine) despite my belief that the side-effects heavily outweigh my single problem of bleeding (drastic none-the-less). Doctor's offer no other option.

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Before I repeat again that you need a second opinion, just one question about "pain" and symptoms. Do you have diarrhea when you have what you call "flare-ups"? Does your intestine make strange "gurgelling" sounds? Do you have trouble eating things, for instance raw onions, that is, if you eat certain foods you are more likely to have diarhhea? If you have no pain, is there no discomfort whatsover, not even a slight pressure on the left or right side of your belly?

I am asking this, because during the times I had the heaviest symptoms after my diagnosis and before surgery to remove several severe strictures, for 3 years I told doctors "I am not in pain", simply because I classified pain as something that hurts as in you cut yourself and it hurts. What doctors mean when they say pain, is that you feel an "irregularity" in your body, or in other words there is some discomfort that should nto be there.

My greatest fear is destroying my immune system long term and not living a normal life. I live a normal life except during these bleeding episodes where I have to rest it out till the bleeding stops.

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Immunosuppressive drugs don't destory your immune system. Azathioprine is a purine analogon, what it principally does is due to its concentration in the blood, it disrupts DNA and RNA replication... basically by just being around (which in turn lowers the amount of white blood cells your body replicates). It doesn't attack anything, it is just there and goes away after a few hours (aza has a chemical and biological short decay time). What people are concerned about is a potential increased likelihood of cancer (on orders of magnitude much smaller than e.g. if you smoke cigarettes) and a likelihood of liver problems due to the increased purine concentration.

Similarly, biologics (Which in your case are probably the much better approach to take, due to your active disease which azathioprine cannot fight at all) such as Humira or Remicade disrupt the communication between cells so that white blood cells aren't produced in that high numbers. Similar to aza, the risk are increased cancer, potential for infections (but both are rare) and the potential of problems with organs. But in this case as well, your immune system itself is not screwed up long term, the functioning of it isn't impacted at all.

I'd like to hear if anyone has any similar stories or advice on going forward with treatment?

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I mentioned it above, I think the most important thing you need to get clarity about is what kind of disease you have. If it is Crohn's, which depends on your symptoms and a proper diagnosis, then it is highly recommended that you start Crohn's treatment, which, in case of an active disease (regular blood loss to the point of blood transfusions being required! is definitely active) requires medication to be treated, that is the case for virtually everything. Side effects for medication are present as explained above, but the side effects of an untreated condition are much worse (surgery, serious long term effects, ongoing discomfort and eventually a much worse direction of the disease long term). Also, drugs alone won't stop much at all. Crohn's needs a combination of efforts including a. stress relief, b. figuring out what you can eat and what not and in which manner you eat, c. in my case sport helps a lot and having daily routines, d. medication and e. supplements to get your system back to normal (blood loss also means, you are probably not taking in lots of nutrition from food).

Thanks Alex I really appreciate your deeper level of advice. It's helped clear up much and given me direction. To answer some of your questions I've bullet pointed them below:

- The diagnosis was confirmed from a biopsy histology report although they had seen ulceration from various endoscopies. From a capsule endoscopy they believed a possible narrowing of the ileum. All ulceration was considered mild. When I flare up they have never tested stool samples to detect signs of inflammation and I do not get any mucus in stools.
- I do have one big ulcer in the ileum (1cm) which they suspect can be the source. For over one year of my life just before my problems started I used to take Anadin Xtra which contains 300mg of Aspirin. I took this daily sometimes 2 or 3 times as I used to get a lot of headaches. The doctors denied this to be sufficient to cause any bleeding or damage.
- I don't have pain although sometimes I do get discomfort at various points below my stomach although this could be down to spicy food or gas. Sometimes I have felt sharp pain come and go very quickly at various points around the abdomen although its rare.
- I too have had 3 transfusions although within 4+ years.
- During a flareup the only diarrhoea I get is if too much fresh blood enters my bowels - this is the only time I would get gurgelling sounds. I don't have any problem eating things although recently certain foods such as yoghurt or creams would cause gas and sometimes too much trapped gas is painful. When not in flaring up I have normal bowel movement and stools.
- I have been eating healthy for a very long time and been more cautious recently. I had almost 2 years of stability although I believe I came out of remission because I started gym and intensively worked on my abdominal region - I blacked out at the gym - this is why I believe it's more physical stress or strain than by inflammation.

I'm more comforted on going the treatment route although I am now more curious to get a second opinion if possible. I am glad to hear you have had this under control. I like your activeness such as Yoga; I wish to start soon. Currently my physical fitness is on hold until I stabilise.

I sincerely appreciate your advice Alex.