It sounds like a couple of things may be going on. The clearest thing is untreated cuffitis, unless I've misunderstood. I'd suggest an oral medication until you can tolerate the suppositories. Have you discussed the suppository problem with your doctor?

Thanks so much for replying Scott,  I discussed it with the surgical team who don't seem to undestand at all, but they've made me an appointment to discuss medication with the gastrointestinal team on the 23rd August. When I asked him about oral medication Instead he said it won't work you need to use the suppositories. Is that true? And will they try and give me mesalasine orally (or its equivalent) or just put me straight on to immunosuppressive medication?

It doesn't sound like medical management of cuffitis (or anything else) is the surgical team's strong suit. You might want to choose a well-regarded gastroenterologist rather than having an appointment with "the gastrointestinal team."

Could you tolerate an enema or rectal foam, or would that also be too painful? Has anyone suggested that you might have anal fissures?

Sorry I meant to say professor Hart, she's the gastrointestinal doctor I'm seeing she's supposed to be great, I hope. Yes I do have a fissure at least one they couldn't examine me to see anymore as to painful, and I think I've now got hemmeroids as well,  I couldn't handle anything up there at all, unless the syringe part that has to go in is really really thin, like that of the anusol treatment or the syringe on instillagel to numb things. I just feel like crying it's all I do I don't know whatbt I do. I never really tried immunosuppressive medication before surgery I was to scared and then when the flare got so bad they tried one last dot have attempt with remicade but that didn't work and then surgery, I wish now I'd tried the medication more, I'm worse now than I've ever been with my colon! Is there any hope from here? I don't want the bag, but like this I can't do anything,  I feel bad for my kids I can't do anything with them I feel so sad

Sally, it will get better. In the meantime the fissure needs some TLC. Are you doing sitz baths? Can you work on getting the consistency of the poop soft but not liquidy? Fiber is often the best tool for that. Are you using any specific medication for the fissure (like nifedipine or nitroglycerine), or just pain control? It's probably time to move past your fear of specific medications, and focus on getting well. Good luck with Dr. Hart!

Hi, Sally. A few days ago I was reading on another site specific to fissures and found this list, which I will ask my surgeon next week. I have fissures too, but at the moment not the extent you do with pain and burn (that was last week). 

"Glyceryl trinitrate. An ointment applied directly to the anal area. It works by expanding blood vessels in and around the anus, which helps to increase the blood supply to the fissure, helping it heal faster. It can also help reduce the pressure in the anal canal, which should help ease the pain."

"Lidocaine. For severe anal pain, this is a topical anaesthetic for anal fissures. Gel or ointment, and used for one or two weeks before passing stool to numb the area."

"Calcium channel blockers. Topical calcium channel blockers work by relaxing the sphincter muscle and increasing blood supply to the fissure."

If you take this list to your doctor / surgeon, ask them. There can be side effects like headache, dizziness, itching. I hope it is helpful. Small sitz tub you can buy ($18 Amazon) and fit it over your toilet (the seat up). Fill with warmest water you can tolerate. Sit in it as long as you can and the hot water will bring blood to the area, helping the fissures heal. My nurse taught me this before I left hospital after takedown. I found that surgical teams don't always understand the day to day reality; their focus and specialty is what they did when they opened you up. Can you try to talk with your ostomy nurse? Specialty nurses seem to know about the day to day because that is what they deal with. I am sorry about your pain. 

Thanks Scott,  I really hope it does, I'm doing lots of site baths and I'm taking some fibregel also, but for some reason even when the stool is soft even watery I'm still having to really really strain and push it out :/  I'm taking tramadol for pain but to be honest I think I'm benefiting from its anti depressant property than anything else, I've been given a numbing gel (instillagel) that comes in a a syringe I put that in just to numb it, but I can't put the suppository in, and I've been given diltizam cream but I can't put the cream into the an us so so so painful so I just dab it on the outside which probably isn't doing a thing! 

Winterberry thanks for the list, I haven't used the calcium chanel blockers I will ask about this when I go back on the 23rd this month, the other mess I've used but like I said above I can't seem to get them into the anus even when it's numbed it's just so painful,  I bought the small site bath that's been really helpful, but I've been using cold water! Thanks for the info ill use warm water from now I hope it helps

Thanks so much for all the help and advice

Diltiazem and nifedipine are calcium channel blockers. They won't help at all unless you are able to apply them. Maybe shortly after the numbing gel?

The straining isn't helping, but your sphincter may be in spasm, acting like a cork. If all else fails you might try Botox injections.

Thanks Scott,  I look your advice and came up with a way to try and get some Diltizam applied, I put some into the sterilised syringe given to me by the hospital I tried to syringe it in but think it was a little thick so I just applied it to the outside of the syringe that goes into the an is and I'm hoping some goes inside. 

The spasm thing you mentioned sounds right it feels like I need to strain so much I don't want to but I end up having to for ages and I still feel like there is something stuck in the anus,  and when I really have to go to lop it's becauseb I get an intense burn up there, nothing much wants to come out but just need to try and help the burning feeling by going to the loo.

At the moment I have to go to the loo because of this burning feeling and then when I go I strain when I don't want to but otherwise I don't feel empty.  Even when I  do strain I don't feel empty feels like some things stuck in the anus and I can't get rid of bit,  I feel constipated as well, it's not to thick what comes out but it's not water, what could be going on??

Also the skin/area between the front and back passage is that the perianal skin? It feels very hard closest to the anus almost like a lump in there? At the very least it's very hard and it feels like pressure there constantly, any ideas??

Sally, I'd suggest having your doctor examine the lump. It could be a small abscess or cyst. I hope the diltiazem starts to help.

Thanks for the reply scott, if it is an assess or a cyst do you know how it's treated? And also are they dangerous the pressure is sobintense but my appointment to have it seen to is on the 5th October with no chance of being seen earlier! 

Most doctors have provisions for urgent problems, and will see you more quickly under such circumstances. Sometimes the office staff/schedulers get in the way of this, but language like "extreme pain" and "this can't wait" can help. An abscess close to the surface is sometimes opened up with a little cut, which immediately relieves the pressure (and much of the pain). Those hot sitz baths may also help with an abscess close to the surface (sometimes called a boil).

Hopefully this hasn't come from a pouch leak or fistula. If you're lucky it's more like a pimple that got way out of control.

I hope so, everything I've read about fistulas isn't great! When I was recovering from my 2nd surgery (when the pouch was created, and I still had my ileostomy) i got very ill and had to be taken back to into theatre for exploratory surgery they said, when i got into theatre (they told me afterwards) before they started to do anything,  a lot of fluid and puss drained from the anus so they didn't do anything else and brought me back to recovery, and I felt a lot a lot better after that,  is that what an absess is? And if it reoccurs does that mean anything more sinister? 

Also, if they cut to drain an absess can it cause incontinence? 

i think it's best not to worry about the worst imaginable complication of a procedure you may well not need. An abscess near the surface wouldn't usually involve the sphincter, so incontinence wouldn't be expected. I don't know what you had previously, but you could ask your doctor. If it was an abscess, this current problem might just be a little bit left over, rather than a recurrence. 

Thanks so much Scott,  I hope it just something easily fixable I really do, my nurse just called me I had an mri scan done recently and she said every thing seems to fine no leaks, I asked her if that would have shown fistula and assesses and she said everything seems to be fine in that area, is an mri the best thing to show this? 

Hi guys I thought I'd give an update,  so the er doc said the lump around the anus is most likely a hemorrhoid, and my consultant has booked me an appointment on 5th October to have a look inside the anus and see what else is going on 

I saw the gastrointestinal team a few days ago and basically explained the pain I have in inserting the suppositories basically I can't!  So he seemed to think all my symptoms point to cuffitis and my last scope did show cuffitis, he has given me salofalk enemas with a thinish novel to try and I have been for 2 days, but the fissure pain is back now and killing me, but I'll still trying the enema, thing is for at day I did it I had a whole load of blood on the toilet is that normal? And since I did it 2 days ago I have totally watery stool coming out. 

He's told me to carry on for 8 weeks, did anyone have a positive experience with this drug? I really hope so!

Thanks in advance

Sally x

It is essentially the same med as the mesalamine in the suppositories. Since you have not been treated for some time, I am not surprised by your initial result. If the bleeding does not taper in a few days be sure to call them back. Some people just cannot tolerate mesalamine and it makes the inflammation worse.

Jan

Thanks Jan!  The bleeding is now on and off, but u can only retain the enema for about 2 and a half hours at most, can it still work?

Yes. Ideally you hold it at least 3 hours, but you still will get benefit. You could try giving half at a time and inserting the other half after you expel the first half (if you can guess what half is!). Either way, if it is working, you should be able to retain longer later on, and get a better benefit.

Jan

Thanks Jan, I'll try halving the dose and doing it twice. Yesterday I couldn't retain it at all I puy it in and then had to run to the loo does that mean things are go I be downhill? And today during the day I've been going to the loo more and feel urgency to. Today is day 7 of us I get the enema but I don't feel better and maybe today a little worse??!! Is this normal? 

Thank you, Sally xx

Normal? Who knows? Just kidding. But I think it is not atypical to have some backsliding on rectal treatment. Mr. Butt probably gets pretty annoyed with something being stuck int there all the time. I would not expect a huge improvement in just 7 days. Mesalamine takes more time and is good gor maintenance. I'd ask about hydrocortisone suppositories or enemas for more quick relief.

Jan

Lol! Very true I think the word normal is not so normal for us anymore! Good to know it takes longer than 7 days I felt a bit like giving up to be honest as my takedown was over 19 months ago now and I've had no relief!  If it's okay I might pm you Jan about the hydrocortisone enema I have a few questions  

Thanks again

Sally xxx

Sally, I had a very similar experience about 2 years ago. I noticed a lump and extreme pain just like you described. Long story short - it was a fistula where the pouch and rectum connect. My MRI's and CAT Scans didn't show it. They ended up removing the lump and opening further issues. I would have them make sure it's not a fistula draining into a pocket. It presents very similarly to a cyst. I went through 8 months of issues trying to get people to figure out the problems until a surgeon found it on accident. Hopefully that helps.