Rectal blood 'floods/clots' - Seeking advice on symptoms

Hi everyone!

So I've been going along since my ileo in Dec 09. Not feeling the best (as good as I was hoping for) but doing okay.

I didn't have a Barbie Butt done ... so I have about 6" of rectal stump left. It has been a problem to some degree ever since the op. Still getting minor UC flares there and using Cortifoam and Salofalk enemas.

Usually, pressure, mucus, some blood -- enough discharge to wear a pad.

So last night I felt pressure while sitting on the couch and then a release. Quite a lot of fresh blood, with little 'pieces' of darker clot stuff.

It didn't continually pour or anything ... but then an hour or so later, some more blood.

This morning, quite a bit on my pad.

Anyone else have this happen?

Other than that, I don't feel any different. No fever or such.

Trying to get in with the GP (should I have to go to emerg, seeing the GP first usually bumps you up the line)

Thanks for any info.

I am one year post-op with my ileostomy. My rectum is still attached. I have also had mucus and blood discharge for the whole year. I was tested in February for this condition and the GP says it is "diversion colitis". Nothing to worry about (I hope). Sometimes I don't think they take some things too seriously. So I'm living with it! Better than another surgery. I was told to be tested for cancer every year. Eventually, I will have my rectum removed. But now I feel sooooo good, I don't want to ruin a good thing. I would still tell you to get tested, everyone is different.
- Margaretg

Sounds like we're in the same boat!

I've got the colitis there too. And I get tested every year.

I'm used to the on again off again mucus with traces of blood discharge.

But this session/amount of blood is different ... more volume and more abrupt. Almost like a polyp or such burst.

Glad you're feeling so good ... I'm trying to put off the rectum removal op too. Not ready yet.

Thanks for the reply,
Beatrice

Hi Beatrice, you sweet girl you. I feel bad for what you are going through. I know others who are dealing with the same. Personally, it is not my experience or situation, but I strongly support the Barbie Butt idea for you, hun. You wouldn't be sorry. Take care!

Hi Beatrice, I have never heard it called that before... 'Barbie butt' nice. It is the only thing 'Barbie' I have. I had my 2nd surgery 1 year after my ileo and have never regretted it. It is surgery and did take a bit to get over, but now it is all good. You will hopefully get your current situation looked after. Positive thoughts to you.

I know that surgery is in my future... but it just doesn't feel right to have it done now. A gut feeling that is very strong. I have had all kinds of medical things done... I go into them hoping for the best with a good positive attitude. This is different.

Maybe it's the horror stories I've heard about this op. Maybe it's because I'm just not feeling myself physically or mentally. Part of it is that I know how I feel now... while it's not what I hoped for, I can handle it and it's become familiar. Fear of the unknown...

Anyways... the sun is out and hubby and dog and I are heading out for the day. I have my pad on (replacements in my purse) and a smile on my face.

Have a great day everyone!

Hi... just a quick comment... I had similar issues experienced after my mid-2009 colon removal with rectal stump left for possible reconnect.... but the issues you described were ever present... From Feb 2010 to Feb 11, the frequency of discharge and the incidence of blood associated with it increased... having for lifestyle reasons etc. I decided against the reversal... I had the rectum removed Feb 15th this year.... The surgery went well and I sit without difficulty... unless on something really hard but that will be ok in a few more weeks. I had lost 20 lbs, 10 of them are back... I did have a bowel blockage the day I returned home from the hospital. I had some air in my stomach and bowel and it, along with my over exuberance to eat a few goodies too many... I ended up back in the hospital... just take it easy when starting to eat after surgery... the bowel takes a while to start up. One other reality... if you have had UC for a long period, there is an increased risk of rectal cancer... if you are not going to have a reversal, then it is advisable, according to the medical people, to have it removed... they basically say relying on periodic detection is much like Russian roulette.... there is a lot of blood flow to and from the rectum... it can happen that rectal cancer can be quite progressive well before detection.... something to research and discuss with an oncologist and surgeon... All the best... personally, I am happy not to be administering Salofalk every day... and the worry of rectal and colon CA is gone... Scotiaman

Dear Scotiaman -- Did I ever need to read your reply!

I ended up going to the emergency room around 10pm on Friday and was admitted. My gastro doc and surgeon wanted to see me the next day.

All you say is what I heard.

Prior to this occurrence, since I wasn't bleeding in 'scary-to-me' amounts, I really was sticking my neck in the ground regarding the cancer risk.

Anyways, I'm home again, the tear is healing (that is what it was ... the lining of the colon gets thin from 'no use - no stool passing to keep the area stretched and healthy'. So the lining tore and probably just over a blood vessel. Unless you're pouring blood, it often clots and heals. That's what's happening now.

I was told that it would no doubt happen again. This time the blood loss was not dangerous, red blood cell count over 3 draws was lowering, but not dangerously so.

That means I don't need emergency surgery, but I was told to seriously think about the operation. If you knew my gastro doc you would understand that he thinks I should have it. I see him again in a week and a half (or sooner, if the bleeding kicks up again). A brilliant doc and gentle man who actually works with the 'person' not just the body part. He knows I need some time.

So I'm preparing myself emotionally for the operation.

How long was the recovery ... where you got to the point where you might be sore on hard seats, but you were feeling like taking a walk/doing normal stuff. I know we all heal differently, but I just want an idea.

Thank you so much for your reply -- thank you all for replying. You have helped me again.

Happy Easter to all!

Hello, Beatrice, and Happy Birthday. I was feeling a lot of self pity lately, over losing my anus and rectum to anal cancer. I don't much like living with an ostomy, though it's tolerable at times. But when I read about your bleeding episodes, I felt worried about you. If your doctors advise removal of the rectum, I heartily recommend it. I was having bleeding from the anus before my cancer treatments began. Radiation burned my butt and everything near it, but it did reduce the tumor, and the bleeding stopped. The tumor was large and took up a great deal of the anal sphincter, so despite my wish to avoid it, I had the anus and rectum removed, along with my ovaries, which they said could harbor cancer for a long time without detection. At this moment, I'm beginning to think I should have let them take the uterus too, as a precaution, but I didn't want to be in "hormone hell". The oopherectomy left me with hot flashes, but they've subsided, after a few months.

I will not lie, it took months before I could sit comfortably without a pillow under my bum for any length of time. I'd sit for a bit and then have to lie down, and sometimes even had to lie with my knees bent, my feet on the bed, and lifting my butt off the bed. This did give me nice, round glutes for a while... but now I can sit for hours, without horrible discomfort.
I think it was not typical, though. As it turned out, I had a large internal abscess in the spot where my anus had been. It was filled with pus and fluid and eventually had to be surgically drained. There was almost immediate improvement, and I could sit easily after the drain was removed.

My surgery was last July 30, 2010.

Even now, the scar tissue is very evident when I sit. But then, it's a blessing perhaps. I used to do entirely too much sitting. I gained weight. Now I hike, walk, jog, do yoga... and I'm thinner, more fit, and healthier than I've been for years.

Best of luck to you. Have the surgery. No sense in carrying around a "cancer magnet."

I have a daughter with Crohn's. I'm familiar with the suffering a a Crohn's or colitis patient. For years, I thought I might have one of those maladies. But it turned out to be only cancer. I am on chemo now, but in a few months I'll be finished, and the suffering should end. Hopefully there will not be a recurrence.

Happy Easter. Be well.

Hi Beatrice.... Recovery.... My surgery was Feb 15th of this year. During the first month, it was more comfortable to lie back than try to sit. Although I did use the 'rubber donut' at times, this is the period when the swelling is going down and the healing starts. By the end of the second month, I was off the rubber donut.. Walking 30-40 minutes every other day... Right now, there is a slight pressure there, but I forget about it most of the time.... During the second month, you will notice almost day by day that the tissues are healing... You will want to take daily Epsom salts bath, it will help the healing.... Otherwise.... All is well.... Keep in mind I had no issues to complicate the process such as fissures, history of CA, scar tissue, etc. All the best, Scotiaman.

Hi there. I am an ET nurse who spent many years in home care/hospice and then in outpatient, and ran a support group for ostomates for a few years. I think it does help if you have a chance to meet folks in person for at least a few months and get some tips and insight into recovery issues, different supplies, etc. They give us so little time to teach in hospitals anymore!

It may help you to know that, in my experience, ostomates manage much better to readjust socially than the folks who have incontinence issues related to insufficient sphincter control, such as men who undergo radical surgery for prostate cancer, or people who have colitis and need to go to the bathroom 30 or more times a day.

Hang in there, try different equipment (all companies will send you samples and it is worthwhile to try them out -- easily done online!).

What a pity to have had to deal with an infection while you were recovering! Of course you could not know that the pain was not "normal".

I'm new and have just joined this site. I had a permanent colostomy and total removal of the rectum, etc. on 1st April due to a condition called intussusception (rare in adults). This operation was to give me back a quality of life that has been missing for 5 years. I have been hunting for medical info since I was released and was delighted to find a reply to another member from wondering if I have got the name right? It covered a lot of my worries. The stoma side of the operation is doing not too bad, but the rear end is so uncomfortable. The drain I had in for the operation wouldn't stop filling and I was kept in bed for 9 days. It was still filling, but they decided to remove it anyway. I ended up with an infected drain wound and was put on antibiotics. The problem most worrying me was pain in the rectum. I kept mentioning this and was given painkillers that did nothing for me. The day I was to return home, I was taken for a CT scan that showed there was a small mass in the pelvic area. I asked what was meant by this and was told if it had been bigger, it would have to be drained, but I still wasn't told what the mass was. They said the antibiotic I was taking for the drain wound should clear it up. I asked how I would know if it was not clearing up and was told, "You'll be really ill." I was interested to read the bit about the abscess. How did they drain it? I really don't want to go back in, but the pain is still there and it's holding my progress up. I don't want to make a fuss if it's the stitches and the short time since the operation that's the real cause. Sorry to be going on, but I'm not sure how long to let it go on for. I will be pleased to get any feedback.
Thanks
Lara.

Not sure if this already went through, but I'll post again anyway. Your topic caught my attention right away. As did 'Barbie-Butt' (too funny, and true!) I'm having the same issues as you-though I haven't been to emerg yet! I am on the surgery list (for a year and a half) but have been having regular scopes to check for cancer, so I wasn't in a real rush to head back into the hospital. It will be 4 years in June for when I had my ileostomy. I've just started feeling comfortable in my newer job (back to work after staying home with my kids) so it's not the best time to be going off on sick leave. I'm hoping to postpone it until the winter at least. I know what you mean about having the right feeling about going in. If you can wait until you're ready it is better. I'm going to ask the dr. for some enema/suppositories to see if I can calm things a bit before my name does get called, and hopefully be able to plan it the way I want. Helpful to see everyone's experience on here - thanks for sharing!

Hi Horselover --

It's a hard decision no matter how long we think on it.

I get all secure in my decision to have it done ... then I read about non-stop draining of wounds, sinuses, fissures, etc. Like most of us, I don't have a problem going through an op and recovery ... as long as it is a recovery. The thought of ongoing problems post-op gives me the jitters and I'm not a jittery person.

All we can do is just hope for the best. Paws crossed that I don't have to wait too long for the op.

Re meds in the meantime. Here is what has helped me with the latest bleed -- the combination of both seems to be the key at this time. Either, used alone, doesn't do too much good.

Morning: 1 suppository (Salofalk 1000mg). I put it in and just lay down for a few minutes ... it stays in!
Bedtime: 1 application (Cortifoam)

P.S. The term "Barbie Butt" ... I love it too but can't take credit for it. I read it in a post months ago on this Forum. Oh how I made my GP laugh when I used that term.

I was told that I would have my rectum removed during my ileostomy, but due to complications, I had to wait a few months after ostomy to finish surgery. I have Crohn's and the rectum and fistulas were always a problem. After the ostomy, I had some drainage and some spasms but nothing else. I had the surgery for my Barbie butt (love, love, love it) on a Thursday and returned to work on Monday. I didn't have a moment of problems, compared to the ostomy surgery the pain was very little, if really any. I know I am lucky and my surgeon was the best, but I am glad that I removed that potential cancer zone.
P.S. When you go to the beach, the sand really doesn't have anywhere to go.
Good luck and I hope your surgery goes as well as mine!
Lisa

Hi Beatrice;

I too have the bleeding down there. On occasion, there comes a wave of heavy, thick blood as you described. It seems there are clots in the blood. There are times I can just sit on the toilet and push it out like a poop, but it's blood or milky blood. I have stopped taking the Salofalk as it was not staying up there long enough. In Jan. 2011, I started taking Remicade, and this is supposed to clean all that up. So far, it is not working. The gastrologist doctor told me it would be after about the fifth or sixth treatment that it should clear up. I will see him on June 28 and will see then. I have had this since 2004 and am getting a little concerned. My surgeon wants me to have it removed, but I have been through hell and am just getting healthy enough to go in for the operation, which is soon approaching, I guess. The gastro doctor thinks I don't need to go for the operation until I have to do other work in there. I will see.

I hear ya! So you're "pre-op" now ... you still have all your parts?

I never did the Remicade ... the downside of that treatment was too much of a risk for me. I had my ileo when I was in very poor health and it was emergency surgery - almost didn't make it. If you have the option of a planned surgery ... it's the way to go.

Human nature to "wait till it gets really bad" ... but deciding when that is ... is hard.

All the best to you.

I've been having lots of blood with clots that's much like a... butt-period. It always happens after I do the deed with Boyfriend. And during. And for the next day or so. Too much blood to be absorbed by a pad, too.

Ms. Bean, you don't say a lot about physical issues that might be factors. I probably couldn't help anyway - but that is one area you might want to explore with medical assistance (and I really don't like medical professions - lots of judgment). Wouldn't want to see you give up on that 'fun' aspect of life. Enough joy falls by the wayside of life anyway. Cling to pleasures. Paganistic?

I'm absolutely not religious and I have little patience for dogmatic or reverent philosophies of life. I'm into reserving judgment, getting all the facts, critical thinking, offering help when it is needed and deserved, and practicing apathy where it really counts (learning to choose my battles and have patience when it would be beneficial).

Not an easy philosophy, but one I enjoy, also. It can be a lifesaver when energy is severely limited. I am so very careful where I choose to spend my limited energies. My 'spiritual' questing helps me (not even a suggestion there). I just love to look at, explore, think about and dance around in my mind - with.

Another viewpoint is that radicals, fundamentalists, and narrow thinkers speak out loud and clear. Peaceful people are quiet and often remain unnoticed.

So - the point? Take care of you - there aren't enough like you in the world.

I certainly understand not wanting any further surgery, but getting rid of that troublesome rectum would probably be a wise decision. I had a permanent ileo in May 2010 due to severe U/C. Due to other issues, I was not a candidate for a reversal. Therefore, I opted for a total proctocolectomy, at the surgeon's and GI's insistence. Thankful I made that decision...they found cancer in pathology that had not been detected despite numerous scopes and biopsies. The recovery was not terrible. A little discomfort from the anus being removed, but otherwise not bad. BTW, discuss with your doctor about having the sphincter-sparing surgery. Removing the sphincter requires a MUCH longer recovery. It has to heal from the inside out!

Do your research and go to your doctor informed and ready to receive answers to ALL your questions!

Best wishes,
Louise

Hi Louise!

Did you have the sphincter muscle left in?

Besides the (hopefully) quicker healing time when it's left... isn't it helpful in stabilizing the pelvic floor.

I have to read up more on it before I see my surgeon later this month.

Any tips/info you have would be helpful. Thanks.