Bleeding - scar tissue / joins?

[Muppetgirl]

Argh I have been bleeding out the back today. Bright red blood and when I went to the toilet watery red followed. It is manageble but significant - like a light period for the ladies out there.

I am really confused. This has only happened to this extent once before, but that was before I had the obstructive problems so I wrote it off as 'one of those things'. My problems are supposed to be due to scar tissue but why would that bleed? Could it be at the join?

I much prefer it when I can understand what is happening but I really don't get it at the moment. Just a rollercoaster. Due to see consultant again soon but has anyone else had similar with scar based obstructions?

Ps I know its not heamorrhiods (sp?) was clear when checked.

 

[DJW]

Hi Mupprtgirl.

I've never had bleeding from a stricture. Was it a one off or has it happened several times?
Can you give the nurse a call or email.

Sending you my support.

 

[Muppetgirl]

Yesterday it was across several hours, worse when I went to the bathroom. Has continued today perhaps to a lesser extent. It doesn't resemble the more minor bleeding I had with lesions. Only been like this once, before. That time lasted days, but it was months ago, before I had the rest of my current bowel troubles.

I am worried what this could mean for surgery. Why is it never straightforward? :frown: I can ring I guess, just not great at finding the courage.

 

[DJW]

I understand that. You've been through so much.

I hope its nothing.

 

[UnXmas]

I'd see a doctor and get this checked out. It's just too difficult to be able to tell over the Internet what a problem like this would be. Sorry, I know that's not helpful, but I think the only sensible advice people here can give you is to get this checked out by an expert who can test to see what's going on. Please let us know how you're doing now.

 

[B Baker]

Hi Muppetgirl,

I've had rectal bleeding on/off since my surgery and my surgeon said it was due to the rectal stricture I have at the join. I know your surgery was a few years ago and mine was 3 months ago, so not sure if that makes a difference.

Did you manage to talk to anyone? :hug:

 

[fozheart]

Could you have torn something? (I wonder if you can tear an adhesion?) It is hard and scary to be in the dark, not knowing what is going on! I hope that you have talked to someone about it, by now! Hang in there!

 

[Muppetgirl]

Thanks all. I spoke to doc over phone who said to monitor it and come in if it got out of control / severe pain. Sure enough it stopped after a few days like the time before. But the day it stopped bowel was in severe pain (only a few marks off when it gets fully obstructed). I am just bummed that I thought I'd got to the bottom of it (gee it's pun night tonight!), yet now I'm more confused than ever. I'm to see surgeon shortly so hoping it makes more sense then. The worst fear I have is having the op and finding I still have the same problems. :frown:

 

[fozheart]

I am glad that they are going to help with pain control if (when) it comes again, but isn't it just so weird the way they give us all of these fancy tests, yet the problems doesn't seem to show up in the scans?

 

[Muppetgirl]

Thanks fozheart. I have pretty good pain control already. I think she just wanted me to look out for drastic changes, which might mean serious trouble.

Do you mean adhesions not showing in scans? I've found scans pretty good at identifying problems in general. But on the adhesions front yeah, for me they are only ever suggestive of it from the way organs are lying, narrowing, or immobile. Although saying that I once had a mass of over 13cm that was totally missed, which I still find mad, yes it was not where the organ it was attached should be but even so! :ybatty:

 

[fozheart]

So, what did they do about the mass? May I ask what type of pain control could even help with adhesion pain?

 

[Muppetgirl]

Oh they took it out, had no problem seeing it once they opened me up.

Tbh I have different sources of pain, sometimes I can tell which is which, sometimes not. Adhesions have caused me visceral pain from them yanking / kinking unaturally on the organs they are linking, so I find pks help, like it would for visceral pain from lesions or inflammation etc. Sadly i've no special regime its just a plain old hierachy of pks that I use according to the intensity.

 

[fozheart]

What is pks? (sorry.) Can you explain what visceral pain feels like?

 

[Muppetgirl]

Oops bad habit :blush:. I was referring to painkillers.

Hmm not sure as it varies according to the organ it comes from, but I guess broadly speaking it's quite intense, sharp sometimes smarting and with a noticeable start and end point. But thats just me, I think we all experience pain differently. Do you have this with your scar tissue? I could be wrong as half of what I learn about this doesn't stick, but I think if painkillers have zero effect then it's not visceral pain. Someone please correct me though.

 

[fozheart]

Oh.. like percs! I don't know what the heck kind of pain exactly that my adhesions cause. (if that is the real cause!) I feel like food gets stuck in that area, so the more full I am, the more pain. It is as though everything get lodged under the spot where my colostomy was, but when I have nothing in me, it is not so bad. So.... If I don't eat, it is better, but of course then I am tired and weak. Are your doctors really sure that your obstructions are caused by scar tissue, or is it more or less a guess, or an assumption? Have they talked about going back in to remove it? (My doctors just say that doing that for me would just cause new scar tissue, which would defeat the purpose.

 

[UnXmas]

I believe it's very difficult to determine if adhesions are the cause of pain, for doctors as well as for patients. It's often a diagnosis of exclusion - if a patient has adhesions, they are assumed to be the cause of pain if no other cause can be found.

Because I've had a lot of surgeries, when I was admitted as an emergency a little while ago, with a blockage, the first surgeon I saw told me very confidently it was being caused by adhesions, I think based only on the fact that I'd had so many surgeries previously. Thankfully another surgeon took over, and when they did do surgery, it turned out the blockage had nothing to do with adhesions.

I think it will be very difficult to know if adhesions are the problem just based on symptoms and trying to work out the type of pain you're having. You won't necessarily need to undergo surgery to figure it out, but you'll probably need some tests (imaging tests, etc.) to see if there's another cause.

 

[Muppetgirl]

Oh.. like percs! I don't know what the heck kind of pain exactly that my adhesions cause. (if that is the real cause!) I feel like food gets stuck in that area, so the more full I am, the more pain. It is as though everything get lodged under the spot where my colostomy was, but when I have nothing in me, it is not so bad. So.... If I don't eat, it is better, but of course then I am tired and weak. Are your doctors really sure that your obstructions are caused by scar tissue, or is it more or less a guess, or an assumption? Have they talked about going back in to remove it? (My doctors just say that doing that for me would just cause new scar tissue, which would defeat the purpose.

There are so many different sources of pain in diseases like ours. I guess I've just learnt to differentiate through having what I thought was the trouble always confirmed in theatre, but I don't always know on a day to day basis. What you are saying makes sense though, as although some studies have found nerve cells in adhesions, there is still controvesy over what this means, so mostly adhesion pain is from things getting pulled and stuck etc. But undoubtably with your complex history there will be other sources of pain. Do you find painkillers helpful? I'm so sorry for the crappy double bind you are stuck in.

Yeah they are sure, but there is always the risk that others things are going on at the same time. Thats why the bleed I posted about concerned me because they have ruled out large endometriosis lesions I typically have, but shallower lesions are still around and these can play havoc. Yeah my team are going to operate, thankfully I can trust them to do whatever they need to.

 

[Muppetgirl]

I believe it's very difficult to determine if adhesions are the cause of pain, for doctors as well as for patients. It's often a diagnosis of exclusion - if a patient has adhesions, they are assumed to be the cause of pain if no other cause can be found.

Because I've had a lot of surgeries, when I was admitted as an emergency a little while ago, with a blockage, the first surgeon I saw told me very confidently it was being caused by adhesions, I think based only on the fact that I'd had so many surgeries previously. Thankfully another surgeon took over, and when they did do surgery, it turned out the blockage had nothing to do with adhesions.

I think it will be very difficult to know if adhesions are the problem just based on symptoms and trying to work out the type of pain you're having. You won't necessarily need to undergo surgery to figure it out, but you'll probably need some tests (imaging tests, etc.) to see if there's another cause.

Yeah I think it can be a diagnosis of exclusion, which unfortunately means its occasionally applied a bit thoughtlessly. I'm sorry to hear that, it's no fun going in an emergency, but I'm glad they got to the bottom of it in the end. Not sure if you meant me or foz when you said 'you'. In my case I make them like there is no tomorrow. I had a frozen pelvis where ovaries, womb, bowel and bladder were densely stuck in one immobile mass, that was discovered at my first surgery, so caused by disease alone. I have been managing a partial obstruction for some time, which recently worsensed blocking fully on occasions. My day to day life is a misery with it so they are operating again.