Sorry I don't have any advice but I hope they find the source soon.  Sounds very painful.

Ray C.

MRIs aren't foolproof. The good thing about Botox is that it is like a sphincterotomy, without the surgery. The effects wear off within 3 months. So, it is  probably a good next step. Not everyone experiences incontinence.

Jan

Jan wouldn't the pouchoscopy have shown the fissure?

I'm also confused your post title is heavy bleeding, do you mean from the alleged fissure?

Seeing a fissure on scope is not a given. Since a fissure is in the anal canal, it is sort of difficult to visualize with the scope. The anal canal is very short and right up against the scope when inserted. Fissures are better viewed by just careful visual inspection and digital exam.

Jan

Hi,

I presumed the bleeding was from the fissure at first and when my surgeon tried to do an examination in clinic he said that the sphincter was in strong spasm so he discontinued the examination, but said that this confirmed to him it was a fissure, so he started me on the diltiazem cream and put me back on antibiotics.  This really hasn't worked at all this time and I am taking naproxen and co-codamol for the pain which helps, though it feels so like colitis to me now,  but without the stomach pains!

Thanks for the info on the pouchoscopy Jan, that explains why the scope looked fine to him, but surely they would have found it on the MRI as that was what they were looking for specifically...having said that my collapsed pouch didn't show on the x ray and when he went in there was only a 1cm space left between the walls!!

That's a relief that not everyone becomes incontinent I was dreading the botox injection as he said it could be for three weeks... but I'm not sure I want him to try botox until he is certain it is a fissure and not cuffitis, although that would surely have shown on the scope???

It is so annoying as on my first course of flagyl it almost cleared up and I was back to 4 or 5 trips to the loo a day with no burning pain..better than I had been for 20 years, it made me realise that my pouch could work great and life could be so normal at last.

Thanks so much for the replies...what would we do without forums!!!  It gives me a few things to ask him now when I see him on the 1st February, as I presumed it couldn't be a fissure as it didn't show up on the MRI.

Many thanks

Bernie

Betty, it sure sounds like a fissure, and an MRI could easily miss it. Since you had such a good response to Flagyl, you might have had pouchitis as well. One possibility: if the Flagyl made your stool too firm (and the pain medicine has continued that), that might have led to the fissure, or more likely just made it worse. Basic fissure care includes sitz baths, keeping the stool soft but not liquid, and keep using the diltiazem. Good luck!

Thanks Scott...if an MRI can miss it then that puts my mind at rest, I don't  mind have the botox injection if it is a fissure but don't fancy it if is something else, but from what you say it seems like it probably is. I've had 5 course of flagyl and cipro which at first almost cleared it up but as soon as I stopped it came back.

My stools are always loose..I don't think I would be able to physically pass anything if they weren't...everything seems very swollen inside to me, or that's how it feels anyhow.   What is a sitz bath???

Thanks again.

A sitz bath is a warm, shallow bath. Click on link below.  It sounds like you may have some pouchitis going on. 

http://www.walgreens.com/store...c4-8ce9-12e2160462ce

Also, the naproxin may not be a good choice for you. It can cause pouchitis, cuffitis, and worsen bleeding. You are better off with topical treatments for pain, such as lidocaine, or B&O Suppositories (belladonna and opium). The B&O help relieve spasm and also provide pain relief locally. The spasms keep the fissure going by preventing the blood from circulating in the tissues. Sitz baths also help relieve spasms and improve the blood supply.

And yes, cuffitis should be apparent on scope or digital exam.

Jan

Thanks for the link Marianne, I have never heard of them, I am in the UK so I hope they do them here as well.

Thanks Jan, I will stop the naproxin straight away, I didn't realise it could cause bleeding but it seemed to ease the pain so I have been taking it on and off for months.  Are Lidocaine and B & O prescription drugs?  My consultant explained that the spasms will prevent healing but hasn't recommended any pain relief as such so I will ask him about these.

If it is a fissure are these usually easily sorted out one treated correctly?

Sorry for all the questions.

Many thanks

Bernie

Yes, they are prescription, at least in the US. 

Jan

Naproxen is an NSAID, surgeons and other docs love to use them as they are effective anti-inflammatories, but you should avoid them like the plague, especially as a jpoucher as they seem to have possible implications in jpouch damage, beyond the conventional GI bleed risk.

thanks for the clarification Jan.

They were not prescribed as I got them in America as Aleve (they are prescription only in the UK), though I did tell my surgeon I was using them and he said it was ok to take them when I needed to..I will steer well clear of them from now on!!!

Betty, some folks have what's called "antibiotic-dependent pouchitis." (I do, for example). That means I have to continue taking antibiotics to keep pouchitis symptoms at bay. You seem to be describing that problem as well as the fissure. Good luck.

I did wonder about that Scott, but the scope was clear and my consultant says the pouch looks great!!!  Do you not become resistant to the antibiotics when you take them long term??  I definitely became resistant to metronidazole as the first course pretty much cleared the problem but not quite ,then after that it didn't have the same effect.  

It must be awful having to manage it with antibiotics all the time, is that al they can do for you??

Betty, you don't have to avoid NSAIDs just because you have IBD or a j-pouch. Some of us tolerate them. Some don't. If you never allow yourself to take them, you do drastically reduce treatment options for arthritis, headaches, fever, etc.. The main thing to remember is that they *may* cause IBD flares, pouchitis, or GI bleeding. It is not a given, but if you develop these things while taking NSAIDs, you should stop them as your first action.

I was able to tolerate high dose NSAIDs for years for my arthritic symptoms, but then had to stop due to liver problems. I am fine now, and still take prescription Relafen when I have an arthritis flare, but I limit it to two weeks before I resort to prednisone. Basically, I just have to weigh the risk vs. benefit and pick the lesser of evils. Otherwise, I am so non-functional, I can barely walk.

Your risk goes up with higher doses and longer term use. But some of us are very sensitive to them and get gut inflammation right away. Even without the inflammation, NSAIDs prolong clotting time, so you are more likely to bleed more briskly when you do bleed. So, if you have any GI bleeding, you need to stop the NSAIDs.

Jan

Betty, I'm fortunate that the antibiotics aren't a problem at all for me. Cipro eventually stopped doing the job for me after a few years, but adding Flagyl has done the trick, even though Flagyl alone never worked for me. Some folks are lucky enough to have three or more antibiotics that are effective, and they can "rotate" the antibiotics, changing them every 2-3 weeks in a cycle, to try to prevent bacterial resistance.

I've stopped the Naproxin just to see if the bleeding eases, if it does it tells me that I should avoid them.  I have been taking them for a long time as well so going by what you say Jan I may have been taking them for too long.  It must be awful dealing with arthritis when you are limited with your meds and it sounds like you get it really severely as well!! 

So you are on permanent antibiotics Scott...do they not clear the pouchitis at all then??

Thanks again for all your advice, I will stick to paracetamol and try to get hold of a sitz bath as well...I will let you know the outcome once I see my guy next Monday.

Betty, the antibiotics clear the Pouchitis perfectly while I take them. The symptoms return within a few days if I stop. 

Thats' not good...lets hope the antibiotics keep working for you.

Thought I would update you after I have had my pouchoscopy.  It turns out I have 3 anal cuts!!!   Not fissures, but cuts, one is on a haemorrhoid on the outside and two are inside...I am so relieved that I now know what it is but treating them is not so simple, I have been given canesten hydrocortisone cream as I also have a fungal infection in the skin.  My consultant said he couldn't inject or band the piles as it would be too painful because of the cuts...I'll let you know how it goes, and if anyone has any experience of this please let me know??

Glad to know you have it figured out. But what puzzles me is the statement that you do not have fissures. Fissures are described as cuts or tears of the lining of the anal canal. Are you sure he didn't tell you that you do not have a fistula? That is completely different from a fissure.

It can be confusing and they can sound similar.

Jan

He was definitely saying fissure, I know the difference between fissure's and fistula's although I agree they do sound similar.  Perhaps it's because they are on hemorrhoids and not on the actual lining (I presume the internal ones are as well) that he was pointing out they were not fissure's, which would explain why they didn't show on the MRI I presume.

The cream has done no good though, so I'm now waiting to hear from him.

Perhaps it was just a thrombosed hemorrhoid that ruptured. That would include a tear and would indeed not be a fissure. This is definitely good news. Hemorrhoids are no picnic either, but if you improve our stool consistency and prevent straining, this should improve. If you have some weight to lose, shedding those pounds can help with reducing the pressure on the hemorrhoids.

Jan

I never imagined hemorrhoids could be this painful!!!   My stool consistency is pretty loose to say the least as I'm not taking anything to thicken it or slow it down at the moment.  The trouble is straining as I have a full feeling in the anus all the time and it feels irritated and painful as well.  Weight is not an issue as I am quiet slim now.  

So if it is thrombosed hemorrhoids are they easily sorted out???  I am picking up a prescription for another ointment tomorrow as the canesten hasn't done anything....I so hope something works!!

You may want to use some soluble fiber to thicken, as loose stool can lead to straining and irritation, just as constipation does. The fiber also absorbs the bile acids, so less caustic effect. 

Hemorrhoids can be extremely painful, as there are a great deal of sensory nerves in the anal canal.

Jan

Really...so maybe psyllium husk would be good, I used to use this regularly but stopped when I was getting blockages.

Thanks so much for all your advice I really appreciate it.