If it's blood (and not grape juice, or something like that) then it's probably coming from higher up than your pouch. Blood darkens as it passes through the GI tract, but the amount of darkening per specific length of intestine can vary depending on your transit time. The darkest it seems to get is black and tarry.

Stopping the NSAIDs is a good idea - they can cause ulcers anywhere in the GI tract, and sometimes the ulcers erode a blood vessel. Healing time will vary. It's good that you're seeeing your doc soon, since he might suggest things depending on his impression. For example, if he thinks it could be in the stomach, he might suggest anti-acid medication.

Good luck!

My husband takes NSAIDS intermittently for osteoarthritis and when he is on it for any length of time he always develops intestinal bleeding.

Thanks Guys,

Scott, regular stool colour is kind of mustardy. But this is like dark cherry red, so it's not quite black, but it's definitely scary and has a strange smell to it.

I know it's difficult for them to get much higher than the pouch, how would they be able to get to the bleeding location? And if they do find it what are some of the ways to treat bleeding in the git caused by NSAIDs (not in the stomach)?

thanks
-d

They can do an upper endoscopy to check the esophagus, stomach and duodenum (likely spots for NSAID related bleeding). But, they may not even do that and just assume it is the NSAIDs that are causing the bleeding.

The primary treatment is stopping the NSAIDs. If that is the only issue, things should improve within a week or two, even though complete healing can take months. You probably will need iron supplements too.

The other question to answer is what is the cause of your back pain and is it IBD related. I bumped along pretty good for years taking ibuprofen for my back and joint pain, until I could not take it due to liver inflammation. Then I wound up getting referred to a rheumatologist who diagnosed enteropathic arthritis.

I still take NSAIDs occasionally for acute arthritis glares, but limit myself to only two week courses.

Jan

Hi Jan, thanks for your helpful info, i didn't realise back pain was linked to IBD, how does that work?

I always assumed my back pain was due to working long hours on the computer, i was actually supposed to get an MRI for my back today but i chickened out as i'm just super sensitive when I'm anaemic and i wouldn't be able to handle that claustraphobic tunnel in this state.

Also, slightly off topic are there radiation risks associated with having too many MRI's i know CAT scans are an issue, do MRI's fall into the same category?

Regarding Iron supplements the tablets destroy my git but the new 20min iron infusion is pretty good.

Thanks
-d

There are no radiation risks from an MRI. The contrast can occasionally cause a reaction. The only reliable damage is to the wallet.

I am not saying your back pain is related to your IBD, but that it may be. Low back pain is very common in the general population, so IBD related pain is often misdiagnosed. Many primary doctors are not very aware of it.

If the pain has been ongoing more than 3 months, is worse in the morning and night (with inactivity) and improves with activity, it is more likely to be inflammatory in nature. Having an IBD diagnosis makes it more likely that it is related. It can predate onset of IBD or occur decades after colectomy.

For more info, you can check out this site:
http://www.spondylitis.org/about/ibd.aspx

Ok, here's the update on last week's tests.

I had endoscopy and gastroscopy, they found minor inflammation in the stomach and superficial ulcers in the pouch due to pouchitis. They also tested for CD and it came back negative.

And here's where it gets interesting, i also had an MRI on my lower back as i had to stop NSAIDs and thought maybe i would need more localised treatment for a slipped disc, they also checked SI joints as suggested. And what do you know, it wasn't my disc after-all, it was sacroiliitis. Huge kudos to Jan for informing me about this!

So, I'm sitting here trying to connect all the dots and I have a few questions.

1. Regarding the Sacroiliitis - is this linked to previous UC, CD, Pouchitis or can this occur separate to the above as a genetic factor?

2. I have had partial blockages in the past which we always assumed were due to adhesions. Although the biopsies didn't show CD, is it possible that they didn't check the right section and that those blockages could have been caused by CD like inflammation or strictures. And can CD cause dark blood in stools?

3. I also saw a rheumatologist who suggested Humira or Simponi for the Sacroiliitis. I'm currently on no medication besides probiotics, so I'm not really up to date with these drugs, if anyone has a good link to info. for these meds that would be great. Also, assuming i have CD (which is really conjecture at this stage) Out of Humira or Simponi, would either of these be able to deal with all three problems CD, Pouchitis and Sacroiliitis?

Any advice would be amazing, just trying to get my head around all this.

thanks
-d

Sacroiliitis: this can be active IBD related or not, or both. This means that you can flare because of active IBD or it can have a completely independent course. If this is enteropathic arthritis (a type of spondylitis) then it is both associated with IBD, but still may have an independent course. If it is ankylosing spondylitis, it is independent of other autoimmune diseases you may have. Either way, the treatment is the same. NSAIDs are a first line of treatment, but can be problematic for those with IBD. You can also treat with sulfasalazine, but not if you are intolerant of sulfa (drugs like mesalamine don't work). Plus, it is mostly for the peripheral arthritis, not the spinal forms.

They are opting for biologics sooner now, as the best option. Enbrel is OK for ankylosing spondylitis or psoriatic arthritis, but not so much for enteropathic. I was on Humira for a few years. It worked OK for me, but I had to inject weekly instead of every other week (more common if you have enteropathic). Plus, it would sting like crazy. I've been on Simponi for about 5 years now and I like it a lot. Once a month injections, and no pain with them! Less frequent injections make it much more convenient if you like to travel, since they must be refrigerated.

Since I started Humira and later Simponi, I very seldom get pouchitis flares, and when I do, they are pretty mild. I still have back and joint pain, but it is much more manageable now. Humira is approved for both Crohn's and CD. Simponi is approved for UC, soon will be for CD too. So either of these would be effective for both the inflammatory arthritis and IBD.

With biologics you need to be tested for TB and you need a battery of blood tests every 3 months to monitor for bone marrow and liver dysfunction. Nearly 10 years after starting them, my labs have only gotten better.

As for the Crohn's, do not underestimate how damaging NSAIDs can be to the gut. I actually had cobblestoning on my rectal cuff that looked like Crohn's, but cleared up after stopping NSAIDs. You cannot accurately evaluate for Crohn's when there is NSAID damage present. That said, no matter how many times you get a negative Crohn's report, it does not mean some day they will eventually make a diagnosis. Still, it matters little, since it would not change your treatment.

For more information about the sacroiliitis and treatment, please see the various pages in the link in my previous post.

Be well!

Jan

Thanks Jan, so so informative and helpful.

-d