When the bleeding won't stop?

[aliciars]

So as my title indicates, my rectal bleeding won't stop. I've been bleeding almost daily since the Fall of 2009. Now, let me say I didn't seek treatment until Jun 2010. So for 9, almost 10 months, my doc and I have been trying to get this under control. It has improved at times, but never goes away.

Over the past month I've been in Chicago once a week for tests. As of right now, I'm waiting to hear back from the Crohns specialist on what all my tests show and where to proceed from here. Meanwhile, my bleeding and frequency are coming on full force again - almost as bad as it was pre-dx, almost. And no, I don't mean a little blood on the toilet paper. We're talking "is there anything in there besides blood" kind of trips to the bathroom.

You can see I'm on Humira and Imuran .... I'm just not sure what I should be wanting to do. I'm wanting to try higher doses of Imuran. One of my docs mentioned more Humira.....ugh. I just don't know. Luckily my pain is minimal, but increasing, primarily when I am on the toilet - that's when my pain is really starting to increase. Luckily, I can still go about my life almost normally.

I'm going to call my doc and Chicago tomorrow and see if we can speed this up a bit. I'm just wondering if any fellow bleeders out there have any recommendations??? Thanks.

 

[Ian]

Hi,

So sorry to hear you're going through this. That's a long time to be bleeding for!

While my current flare has only been going on since November, I'm in a similar situation. I have Crohn's Colitis and was already on 75mg 6MP (similar to Aza) before the flare began. We started me on fortnightly Humira and while the initial loading doses stopped the bleeding a week after taking them, a week after THAT the blood returned. A few weeks later and it hadn't gone away so I went up to weekly shots, will still made no difference. In the end I resorted to introducing 40mg of Pred (which I see you're refusing) and after 3 weeks the blood has reduced, although it could come screaming back (it has done before) and I don't know if it will clear up completely. I'm only going 2/3 times per day and often pass a semi-formed stool with the blood and mucus, and basically have no pain or discomfort. Very strange! But if the blood and mucus don't go away completely I don't think they can just leave it. I've been told that the worst case scenario will be a surgery to remove the inflamed part. I hope it doesn't come to that, but sometimes there's only so much meds can do, so maybe it's something you'll have to consider too. Do you know which area(s) of your colon are inflamed?

I don't really have any recommendations, but as you've already mentioned there are things I've tried that you haven't yet:

*Higher dose of Azathioprine - a lot of people are on 75mg, 100mg, and even higher doses in some cases. Also remember that it can take a few months to really have an effect and you've only been on it for 2.

*More Humira - I take it you're on fortnightly shots if your doc is saying you could have more? Going up to weekly could make all the difference.

*Prednisone - I know, it's nasty stuff. But sometimes it's what's needed to knock inflammation on the head.

*Remicade - I take it you've not tried this yet? If Humira isn't working, discuss Remicade with your doctor as an alternative. It tends to work much more quickly as you don't have to build it up over time in the same way. It also once got me out of hospital when I was bleeding a lot; I noticed a huge difference within 24 hours.

Make that call tomorrow and keep us updated on your progress. Also, are you on any iron supplements or anything? You're surely at risk of becoming anaemic if you've been bleeding for this long? So maybe bring that up with the doc as well.

I know what you're going through, 2 weeks ago I had one of those "is there anything in there besides blood" tips to the bathroom you speak of and think I had a mini anxiety attack. Even when you’ve no pain and can function normally, it's a horrible thing to see! I hope you're able to make some steps in the right direction very soon

 

[aliciars]

Thanks so much for responding & with some possible options. The reason I'm refusing the prednisone is b/c I was on it for a full 5 months & there was minimal improvement but there were lots of side effects. You've given me some ideas, so thanks for that.
I just was talking to a friend of mine who had horrible UC until docs removed her entire colon. She was thinking I needed complete bowel rest. Apparently she had some success with this. You go into the hospital & get feed through IV with steroids???? We'll see.
Oh, & last tests showed inflammation in the rectum & terminal ileum.

 

[Jennifer]

I'd always suggest the medication route before considering surgery. That is a long time to be bleeding and I honestly have no idea why you still are. Its obvious that the medication isn't working and chances are higher doses may not work either. Its usually the combination of drugs that gets things like this under control if that's even possible at this point. I took 75mg of Prednisone, another steroid (I forget the name), 75mg of 6MP, and 2,000mg of Asacol for a year before my doctor decided to do surgery over 10 years ago. I'm still in remission. I used to be a bleeder too from my ileum as well. Once the section was removed, it all stopped and still hasn't come back. I get check ups every couple of years to make sure everything is fine.

Gut rest can work with some people but I don't know. That's a lot of blood and for a long time. There's so much damage already done, not to mention Humira and Imuran aren't doing the job that I'm not sure if gut rest will do anything other than alleviate some pain but you said the pain was minor at this point.

If adding medications (including Prednisone, I know you don't like it, no one does and we all get awful side effects from it), increasing doses, and adding gut rest on top of that doesn't work, then you may have to consider a bowel resection as an option.

Where is the bleeding coming from (rectum or TI)? Surely the doctors should know that by now.

 

[aliciars]

If they know where the bleeding is coming from, they aren't telling me. I know from my scope in June my first doc said that the last 6 inches of my bowel were pretty bad. Now I don't know if that's the bleeding area, I would think probably.....I just finished another round of more intensive tests (2 hours in an MRI machine is pretty close to torture if you ask me), another scope and loads of biopsies with this one (which I was awake for and holy moly, having the scope manually forced through a tight spot from the outside of your stomach is not fun, but watching it all on the screen was VERY interesting), assorted bloodtests, stool test....this is the doc I'm waiting for results from. Last test was done a week ago tomorrow. I think that's enough time for results. So that's who I'm calling in the AM. Prior to this round I've had an Ultrasound and CT scan, and assorted scopes.

Thankfully my pain is very mild compared to many. I AM having increased pain during BM's. I've been checked 2'xs for a fissure, and thankfully nothing has been noted. My Chicago Dr. said I do have a very small tear on the outside but nothing to horrid. But once I'm done on the toilet the pain is mild.

By the way, I just edited my signature to include all of the supplements they've put me on.

Thanks again for your response. I just feel very out of control with this disease and don't know what to do. Thank God for these wonderful support groups.

 

[aliciars]

So today after many many many phone calls between doctors, hospitals and pharmacies (tomorrow will be insurance calls, yeah!!)....the plan is this. I am going on a steroid pack, I don't remember the name - where I start with 6 pills tomorrow and go down one pill a day. It's NOT prednisone, but is a steroid that is a quick burst and taper. I'm also starting a cortisol enema tomorrow as the pharmacy was out of it. And finally, once I get the calls to the insurance company rolling, increase Humira to once a week injections instead of every 2 weeks. If this doesn't get me into a remission - the next step is going to be hospitalization with bowel rest and iv prednisone......whew...please Lord let this work!
Keep the post updated as things change....

 

[davmor]

In spite of an ileostomy I'm also bleeding quite badly at the moment due to my Crohn's (diagnosis is 95% that it's Crohn's although apparently there's a small possibility it's "severe, acute ulcerative colitis" - there are some contradictions at micro/ macro level, I've been told - whatever that means!). After suffering for a few years with diverticulitis, I was diagnosed last year after about four months of heavy rectal bleeding, frequent evacuation (14-20 times a day), pain and weight loss (56 pounds in under four months) - this in spite of repeated antibiotic and steroid treatments. I was taken into hospital for yet another colonoscopy and biopsies, but instead of being allowed out same day (as had happened previously) they kept me in as my condition was deteriorating rapidly. I ended up having six units of blood and two of iron by IV and ended up with a loop ileostomy. That was six months ago and although I've improved in physical condition (ie not obviously anaemic) in spite of Infliximab treatment (now ceased, as didn't help), massive amounts of Predisolone (now also ceased) and Humira (ongoing) along with vitamin and iron supplements, I'm still needing to go to the bathroom 6 to 8 times a day on average and bleeding/ small discharge (stool?) the size of small peas from the rectum each time (along with bad colon cramping). I had another exam under general anaesthetic last week and apparently the ulceration is still present and quite inflamed and it looks like I'm facing further surgery to either convert the loop ileostomy to an end ileostomy (to prevent any possible passage of food) or partial, perhaps complete, colostomy. I'm not looking forward to further surgery, but can't live with the frequent need to go to the bathroom, rectal bleeding and pain (I was on daily Oramorph for almost six months, but stopped due to my concerns about addiction - now I mostly just grit my teeth unless it gets too bad) - also the tenesmus (almost constant feeling of needing to go to the toilet, even after I've just been) is miserable and debilitating. Just to add to the fun, at present the skin around the ileostomy and also where the adhesives fix the pouch is very sore and inflamed, itching and burning so (having seen the stoma nurse today) I've now got a week or two of "fun" trying to get that under control. Crohn's sucks!

 

[2thFairy]

davmor, on top of all of your troubles, it sounds like you have developed an allergy to your current pouch. I would definitely try out a different brand. If you visit the stoma subforum, there are "stickys" in the top of the forum that have the phone numbers of bag manufacturers and they will send you samples out to try.

I also welcome you to join our Stoma support forum for all of us awesome colostas and ileostas (we came up with our own titles!) with stomas.

 

[davmor]

Hi 2th Fairy! thanks for your reply - I'll definitely check out the stoma forum, thank you.

Best regards,

david

 

[davmor]

Well - looks as if the problems with bleeding should be solved soon - although a radical solution; on Jan 30th I'm now scheduled for surgery to completely remove my colon and rectum. Not a nice operation, I've been warned, and a 50% chance of a "non-healing wound" according to the surgeon - I'm just hoping that the coin comes down on the right side for a good recovery! It's nor helped by a problem with my heart (Wolff-Parkinson-White syndrome) which means that even my resting pulse is running at around 100 beats per minute at present and may increase further with stress (of the operation). Ho hum - not got any options here, really, so just hoping for the best...