I'm going through the same thing now. Are you within 3-4 hours driving of UNC chapel hill? If you are you need to go to their J pouch clinic and see Dr. Herfarth for a pouchoscopy and Dr. Koruda if intervention is needed. They started me in stelara for the cuffitis and nifedipine/lidocaine with hot soaks for the  fissures along with oxycodone fornthe  pain. Nifedipine and diltiazem are similar. If you're losing weight and can't eat you need to go get fluids and Iv pain meds until you're able to use the bathroom. That's what I did a couple weeks ago. 

UNC is the best  j pouch hospital I. The southeast. They do 3-4 j pouches a week. 

I'm sorry! Fissures are very tough. I can suggest two more things you can do, that may help some. Warm sitz baths (some prefer hot) can encourage healing. If your circumstances permit these can be done frequently, perhaps after each bowel movement. Also, your stool consistency is important: you want it soft but not liquid, so you can poop with no straining. If you need suggestions for how to do that, just ask.

Good luck!

THANK you both for responding! I looked up UNC Chapel Hill and it says it 8 hrs and 20 mins. At this point though, it might be worth it to go that far.

IV fluids and pain meds make so much Sense to me. The only pain Med that has been recommended by the surgeon is tylenol and that doesn't touch it.

Scott- I'll definitely do the sitz baths. I've been soaking in a tub 3 and 4 times a day, but probably need to switch it up.

And because the stenosis was so tight, I've had to keep totally liquid stools for week now. So making it not as loose makes total sense but if terrifying at the same time.

Thanks again to both of you for replying!!

I'm not an advocate of living life on pain meds but the oxycodone slows my BMs down to 2-3 times per day so it gives my fissure a little time to rest in between passing stool by it. The Iv pain medicine would actually allow you Togo to the bathroom. The cuffitis needs to be addressed with more serious medication than what you have going on I would hunk; however, mine is severe and i am not sure the severity of yours. 

Please call the doctor. There is no reason why you should suffer without pain medication. She needs to prescribe you hydrocodone or oxycodone etc until your pain goes down.

The above suggestions are great I just wanted to add about the pain medication. 

Thanks J Moons and TE Marie! I think the only way to describe the pain is torturous. 

I have a call into the dr. 

Although I do not have a j pouch (k pouch here) I do remember fissures, anal anguish, and pain...

First off, limit as much as possible your acidic output...What are the foods that agree with you? Do you do better with pasta and cream sauce or thick soups? 

You need things that are 'easy on the exit' but don't force you to strain.

Next, although they usually suggest warm/hot sitz baths you may want to try ice just before your BMs to numb the region a bit and give yourself a few minutes of painlessness before you scream.

Aloe vera gel with Lidocaine works well too...They sell it for severe sunburn but it works down there as well. It is available in most drug stores without a prescription.

Not sure if any of this will help but it is worth a try.

Sharon

Pain medicine tends not to help very much with fissures, and the opiates can get you in trouble if the stool gets more difficult to pass. 

Find a new surgeon, she caused more fissures? I can't tell you how many scopes I had  and never had more issues come out of it

You are all so wonderful for responding. Unfortunately, after 3 calls, the surgeon never got back with me today. 

I'm having to force myself to eat because I know it has to come out. But I've definitely limited it to soft, bland foods.

Allykat- a new surgeon is something we're going to have to work to find. I was horrified to hear her say she caused 2 new fissures. I'm assuming that she tried to dilate too forcefully or something. I had enough problems going in and never expected to come out with more. ��

Narcotics helped my burning pain with cuffitis. I never had fissures and they sound terrible too. 

Protein powder in milk or almond milk are good sources of liquid protein. I found them better tasting than the Ensure like products. 

Start with killing the pain ASAP so you can think straight and relax your mind,body and psyche. My experience was either answer my gun or take pain meds. everything else falls into place. What good is any of this if you are being kept alive only to indure lit cigars up your butt.

Sorry I haven't responded sooner- again thanks everyone for Responding. My husband answered the phone with the nurse finally called Friday. 

She said keep using the cream and take Tylenol. I'll be putting a call in to my original surgeon in Cincinnati first thing Monday morning.

I'm getting pretty concerned, because I've now been 20 hrs without a bm. I have to take into account that I'm not putting much in, but still- This is a first for me. I'm accustomed to 10-12 a day.

Is your pain further up that could be caused by an obstruction? If you search here for obstructions there are lots of past posts reguarding them and at home suggestions. 

From my experience it's the bile acid entering the fissures during a BM that causes sthe pain, if you're still experiencing pain but no BMs for 20 hours then it could be a blockage of some kind.

I recently went that long without a BM in a smiliar situation. It wasn't due to an obstruction. My body had constricted the area so much bc of the pain. It's like aportective mechanism activated and I couldn't go to the bathroom either. They did a CT scan and said, well there's no obstruction but your pouch is entirely too full and we need to start you on Miralax to get yout oe mpty the pouch. 6 packets of Miralax and IV dilaudid was the combination that allowed me to empty everything out and my pain decreased significantly once things were emptied. I still didn't let them discharge me after that though for a few days bc I was in so much pain upon BMs that I knew it would just happen again. Sorry you're going through this.  

Its funny how you get so much more info, love and care on this here forum than you do from the ones making a go-gillion dollars cutting on us. LOL

Again- thank you, thank you all for being willing to respond. It helps to know other people understand your situation.

I finally had a bm at the 24 hr mark. I think it had a lot to do with my brain saying "no more pain". 

I refer to our bathroom as the torture chamber at this point.

Thankfully today I'm beginning to see a little improvement. No where near normal, but definitely moving in the right direction!

Thank you all!!!!!!

Good news!

Awesome I'll keep praying for you!!

Ok, here goes a really, really crazy suggestion...But I figure that you are at the point where you need some crazy...to fight the crazy pain.

Honey. Yes, the stuff that bees make.

It is a natural disinfectant, creates a protective barrier and in 100% natural...make sure that it is the real-deal and not a fake sugar mix...

Apply small amounts to the fissures and just slightly inside the canal...here in Paris they are using it on severe burns and I figure that if it can heal burns it may help the fissures.

Worth a try?

Sharon

SKN69 is right about honey. I know someone who applies it to burns or cuts. Look for the label that says raw, unpasteurized honey. This is natural honey that has never been exposed to heat during the processing, and retains its natural antibiotic healing properties. I have this in my coffee or tea. It has a different consistency to processed honey. It's hard, and not liquidy like the additive-stuff that comes in a cute bear shaped squeeze bottle (that I used for years!!).

Oh, does the honey work on butt burn?  Jeffrey has terrible butt burn.  While the plus is working, he seems to have lots of BM's, over 10 a day and of course mostly in the middle of the night.  

Jeffsmom, sometimes taking a remedy back to its simplest, pure form works. I don't know personally if raw unpasteurized honey works on butt burn, but I used to use Zincofax, the brand for babies' diaper rash burns. I was given a jar by the hospital after takedown. Calmoseptine and other stronger creams didn't really help, taking days to show relief, sometimes never, so I finally gave Zincofax a try. It healed my skin within hours. Now whenever I have occasional burning I use the cream just once, and don't need it again. If it's developed for baby's delicate new skin -- and it has to work fast and gently because a crying baby in pain is so tough -- it should work well for our skin that is so overworked. If you try Sharon's suggestion of honey, tell us how it goes.