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Please help...UC, Colonoscopy, Blood, etc...

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Ulcerative Colitis
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Posted 8/25/2011 11:41 PM (GMT 0)
I am posting on behalf of my wife so I will do my best. Please do not refer me to the doctor, I know we need to go to the doctor, we are waiting in line to find someone willing to do more than a kneejerk reaction of a load of prednisone and actually get up there and see. So here it goes...

- Wife has had UC for about 8-9 years
- Came to a head in 2008 when she was hospitalized for 3-4 days, she was bleeding (black) and tarry stool
- Pumped her full of prednisone then gave her Humira 2x/month
- COMPLETELY asymptomatic for about 3 years
- Bled a bit about 5 months ago, was told it was an anal fissure, blood mostly went away with some cream and increased fiber
- April 30th she had a routine colonoscopy when she switched providers and transferred her records over here (I'm active duty military we just moved here in November-December)
- Doctor took a small biopsy
- Doc compared pics of when she was in the hospital in 2008 and April 2011 and just the end of her colon had that rugged look to it, but overall declared that she was looking very good, no need for another colonoscopy for like 2 years
- Hasn't stopped bleeding since the colonoscopy (just a relatively small amount, only at the beginning of a BM - suggesting occurring near the end of the colon - always bright red)
- Has tried suppositories that are supposed to help (I think they believed it was from the biopsy) as well as steroidal enemas
- Mostly blood-free with the use of the suppositories but now she is bleeding again, bright red

What the hell could this be??? Is it possible that FOUR months later the biopsy site is still bleeding? I find it hard to believe that it is a coincidence that after the biopsy she hasn't stopped bleeding...
Posted 8/25/2011 11:52 PM (GMT 0)
No, the biopsy should not be bleeding 4 months later. Does she have any other symptoms - urgency, pain, fequency etc?

Could be another fissure, or could be a hemmie, and might not be her UC at all. I agree that if her symptoms are not that bad, then forgo the prednisone until someone has a look.
Posted 8/25/2011 11:59 PM (GMT 0)
God, thanks for the quick response. Anything is better than nothing. A lot of "health" forums the posts always go unanswered.

The only other symptom she has is pain, but it's hard to say exactly if the pain is emanating from that or not. Even though she has an IUD (birth control) she still gets "period cramps" around the time she would have her period (and it's that time) even though she doesn't actually get a period. Also, she is dealing with a small ovarian cyst (benign but painful) that they are working to get rid of.

So the short answer is yes, she has pain, the true answer, however, is that it's impossible to tell if it's typical UC pain.
Posted 8/26/2011 12:09 AM (GMT 0)
Hmmmm, I doubt from the biopsies from 4 months ago. Could be a little proctitis that is extremely stubbourn (which is pretty typical of proctitis) If so, I don't think you mentioned trying Rowasa (non steroid, mesalamine based enema) This has really helped many even when the suppository did not help. She could even use Rowasa at night and Canasa (mesalamine supp) during the day and see if that helps. It is true though that a Dr. would have to prescribe Rowasa. Again...if not proctitis...maybe hemmies?? If so a steroid supp such as Anucort HC could help for both proc*** and hemms. Other than that, I am not sure...some people bleed from a polyp, but again we would have to wait until doc takes a look. Is she still on Humira? What about an oral ASA (such as Asacol, Lialda, Apriso etc...)
B
Posted 8/26/2011 12:49 AM (GMT 0)
No ASA, she is still on Humira. I will look into this Rowasa.
Posted 8/26/2011 12:50 AM (GMT 0)
I agree...this is most likely not due to the biopsy. However, does the doc that did the biopsy know that she is bleeding??...I would be hounding them. Also, hemmies and anal fissures are very easily diagnosed in the doc's office.

The fact that the end of her colon "had that rugged look" and she is bleeding and has some pain speaks toward proctitis. If the bleeding stopped with the suppository and then started again the doc that prescribed the suppository should be made aware. I fully agree that if the symptoms are not too bad to stay away from prednisone. However, as you know, you have to get to the bottom of this.

If they gave your wife steroidal enemas I don't think they thought it was due to the biopsy. Steroids are notorious for making it harder for tissues to heal. It sounds again like they thought it was proctitis.

You need to be on these docs like crazy until everything is figured out.
Posted 8/26/2011 12:54 AM (GMT 0)
We are, but unfortunately, it takes FOREVER! The ****** the military referred us to (civilian) makes you wait 3-4 hours in the waiting room, then you get to see him for three to four MINUTES, not to mention he is always in a rush and barely speaks English (he's from somewhere in Africa). The process is a royal pain. My wife has to wait weeks to get another appointment to get with her primary care, then they have to refer her (another couple weeks), then you show up and the first appointment is always some BS "intake" and then finally months later you get the follow up.

If we were just going to pay out of pocket, which would we choose and how many?

http://www.canadadrugs.com/family/Rowasa%20Enema/378/
Posted 8/26/2011 1:02 AM (GMT 0)
Do you have to go the miliary route or can you just go to a doc like the rest of us? Sorry, I am in Canada, and I don't know how your system works. I think I would walk into an emerg, if need be, say I was freaking because I was bleeding and no one was giving me answers, and let them take it from there.

Hold on...I see by the link that maybe you are in Canada.....just walk into an emerg and say you have been getting no help by going another route.

What city do you live in?
Posted 8/26/2011 1:06 AM (GMT 0)
Crap, I just talked to my wife, and apparently she was trying Rowasa and it wasn't helping much. Those are the enemas she was taking (I thought they had steroids because they were making her bloated and stuff like prednisone). I am not in Canada, I am in El Paso, TX. The link is there because that was where I could buy the drugs without an Rx
Posted 8/26/2011 3:13 AM (GMT 0)
Sorry....but I do not think you should be getting drugs without a prescription. Some of these are pretty serious and are prescribed, only by docs for a reason. A lot of harm can be done if they are taken for the wrong disease.

...just my two cents worth shakehead

I think there is always a way to get professional medical help. Keep going from one walk-in clinic to another and if that does not work go to emerg....don't let up until you get the help you need.
Posted 8/26/2011 3:33 PM (GMT 0)
I had a scope around the same time as your wife. This scope set me into a flare, and I am still flaring. So it is possible she is having a flare up of her UC due to the scope. The results of my scope did not show current inflammation in most areas, but I suspect if I had another one now it would.

Could you get her to describe the pain? Is it like a burning? Stabbing?
Posted 8/26/2011 3:40 PM (GMT 0)
I agree, might be a flare up due to the scope. I hear that this can happen. Still sounds like she only has inflammation at the bottom. Make sure when she is doing the Rowasa that she puts it in all the way-squeezes bottle and than slowly withdraws while still squeezing the applicator. This will help the medicine get to the very bottom and not bypass the trouble area. Also, if it is true and at the bottom she may have luck w. adding a steroid suppository or a canasa suppository in addition to the Rowasa. The enema can cover the sigmoid and rectum and the suppos. will sit in the rectum and concentrate the med in that spot.

I do hope you can get in to see a Dr. soon though so they can def. confirm the issue. Keep us posted.
B
Posted 8/26/2011 3:47 PM (GMT 0)
BTW, Welcome to the forum! You are a very nice husband to come here and help your wife. If she is feeling up to it...tell her to check us out. I have learned so much from this place, way more than at my Dr.'s office. People almost always answer your questions and they are knowledgeable and helpful. I swear I don't get commission for people joining..lol.
B
Posted 8/27/2011 2:53 AM (GMT 0)
Although the colonoscopy is necessary, It did the same thing to me. I tend to bleed for a long time after.. It has been two years and my Dr. wants me to have another one. I am in a flare now and I won't make the appoitment until I have settled down a bit.
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