Hang in there.  I could be many things....all probably fixable over time.  Contact your doctor soon and if your surgeon does not help you, keep fighting and find one who will help you.  I went through all kinds of stuff like what you are describing. I was on painkillers (are you?) for awhile and I think really helped me dealing with the pain and adjusting to the pouch.  Had strictures, pouchitis, all kinds of stuff - the good news?  It's 29 years later.  I hope you have family who will call the docs and get you the help you need.  Go to ER if it gets unbearable.  Back then, there was not all this worry about pain meds and addiction.  So, I got what I wanted (dilaudid) - sorry - sp on that - and then after about a month or so after final procedure, doc said, "time to wean off." I weaned off, and that was that.  I did have pain through the years, but learned to work through it.  I did and do have gas - never changed.  I used to have to lay on my stomach and push to get it out.  Then, I had a different surgery years later and the surgeon cleaned out a lot of scar tissue and man did that ever help.  No pain meds now. I use meditation to cope with pain and also learn that it will pass - and if it doesn't, I go to ER  - had to do so a few times - usually it was a bowel obstruction and i'd get an ng tube (no big deal - does not hurt) and they'd hydrate me and it would unkink itself.  As hard as it all is, it's common to go through these issues post op.  That said, you know your body, pain is a relative thing, and if you can't take the pain, find a doctor who will help you.  It's hard enough adapting to pouch - you don't need to be in excruciating pain every minute.  The pain management is a part of this procedure that I don't think is discussed much - I love the book, "Full Catastrophe Living" - which is all about meditation and chronic pain management.  Really helped me. I hope you feel much better soon.

Things should gradually improve, not go backwards, although a bit of backsliding is not uncommon. This sounds like more than a bit to me.

This sure sounds like cuffitis or pouchitis or both, especially with the urgency and bleeding. I always have big gas isdues with pouchitis. Your added stress just piles on and makes your symptoms worse. Call your doc tomorrow. If you can't get in right away, ask if you can have an Rx for Canasa suppositories and either Cipro or Flagyl to treat based on your symptoms.

While it could be an anal stricture, it is not the end of the world. Dilations usually work, even if multiple attempts are needed.

Even though this is a rough time for the family, be sure to save time for yourself.

Jan

Thanks so much for replying guys.

Angie- I'm not on painkillers that might be a good idea though, so good to hear it's been 29years and going strong! When you had the structures, did you have to keep having then dilated? And did it fix the problem? I'll look in to that book to with 2 toddlers and a j pouch I need all the help I can get!

jan- if it is cuffitis and it pouchitis how is this treated and is it a chronic issue which means medication for life? I've got an appointment to see the surgeon on Monday so a week today, buti know they will just tell me I have to get used to it, but it doesn't feel right, the nurse keeps saying to me if u feel well in yourself and no temperature then it can't be pouchitis, but I'm going to the loo a lot with urgency and after the pouch was created but before the reversal surgery the surgeon checked the pouch and there was inflammation in it! 

Sally xxxx

A few days after my reconnect I had major problems. No one could figure it out. They sent me home and it got worse and worse. I couldnt eat anything. I could barely stand and by the time I got to the hospital my resting heart rate was 138. I literally wondered if they had left a pair of scissors in there or something. 3 days later we found out I had a major bacterial infection. Everyone was so focused on post op problems it never occurred to anyone that I could have picked something up that had nothing to do with the surgery - but of course having NO immune system and a perfectly new and raw new pouch to thrive in... well 2 weeks later, after being slammed with antibiotics I walked a mile!! So I would make sure they do every test under the sun thats NOT just about the UC surgery process. 

Sally, pouchiitis doesn't cause a fever in most cases. That nurse is incorrect, and it's hard to tell if the doctor believes that nonsense, too. I think you can either get in to see the doctor, to find out if he can even spell "pouchitis," or find a more knowledgable practice.

Sally - yes, had strictures, yes dilation fixed them eventually.  Good advice from the two replies above.  Hang in there and let us know how you are doing.  You've got a lot on your plate with two toddlers - I hope you have friends or family helping you out. 

Scott is right. Fever is not typical with pouchitis. Bleeding is typical of cuffitis, but can occur with more severe pouchitis too.

Just because you may have some symptoms now, it does not mean treatment for life. It can happen, but no point thinking in that direction before you even get a diagnosis.

The treatment for cuffiitis is mesalamine (Canasa) or hydrocortisone suppositories. The treatment for pouchitis is antibiotics, as mentioned in my prior reply.

When you call, have the nurse give the message to the surgeon and tell her that you suspect you have pouchitis and this is getting worse and not better. You may have to wait that week to be seen, but if you can get some antibiotics in the meantime, at least you will find out if they are useful or not. Then by the time you are seen for your appointment, you will have something to discuss.

Jan

Thanks everyone for all your help and replies, I've been feeling really sick and had a pouchoscopy yesterday results were: chronic pouchitis, and active inflation in the cuff, I've been on flagyl for 4 days so had taken it for 3 days when pouchoscopy was done, I was told the pouch looked better than the cuff... I've been given a 4 week course of cipro after the one week flagyl course is finished because the flagyl is making me feeling very nauseous. And I've been given a 6 week course of pentasa suppositories for th cuffitis... My question is basically will this ever go away? I'm becoming so sick and tired, I just wanted to be told 'it's all ok' the nurse said cuffitis notamally goes away, but the pouchitis is harder to treat, also she said I may have to stay on antibiotics for years, doesn't that make you really ill?

sally xxx

Sally, most cases of Pouchitis clear up with 10-14 days of Cipro or Flagyl. Some folks do have to stay on antibiotics - that's worked well for me for years. Consider adding VSL #3 DS if you can afford it (or your insurance covers it). It can help prevent or reduce Pouchitis recurrences. A low carbohydrate diet helps some people.

Cuffitis is like UC in the little bit of large intestine that's left. It can vary a lot, from easy to treat to not so easy, and from troublesome to mild.

Hi Scott, thanks for your reply, it's the last day of flagyl today and the. I start 4 weeks cipro really hope it clears up. It feels like it's the cuff giving me the most problem, feels almost like something's stuck up there! Maybe because it's so inflamed? I've had one pouchoscopy before I was reconnected and then I was told diversion colitis, then this last pouchoscopy I had (first one since being reconnected) I've been told I've got chronic pouchitis, but how they they determine its chronic when they've only just found it out?

im taking vsl to I have to buy it so expensive, but I'm taking one sachet a day I hope it will help also, also any ideas how i can help the cuffitis??

sally xxx

Sally, cuffitis responds best to local application of UC meds. You say you're using Pentasa suppositories - do you mean Canasa? That works for many. If that's not sufficient, adding Entocort (a rectal steroid with reduced systemic effect) can help get the inflammation under control.

For Pouchitis, Flagyl alone was never helpful to me. Cipro, OTOH, was like magic - it worked quickly and was incredibly effective. Others have described it the same way. I hope it works like that for you - give the Cipro a few days before you decide to ask for Entocort.

I had a look online and I think pentasa and Canasa seem to come up as same thing, I hope I'm correct in thinking that, seem to be different names for mesalasine? I'm really hoping it settles with this. I'm starting Cipro tomorrow also. The nurse mentioned mine was chronic but how can they tell this after one pouchoscopy? And also if I had to stay on antibiotics long term how will that harm me? Aren't antibiotics long term very bad? 

Sally xxx

Yes, Canasa and Pentasa are both mesalamine. Pentasa suppositories are what is available in the UK, and Canasa is in the US. 

Jan

I miss that feature we used to have that showed people's location with every post. I was concerned about US Pentasa capsules being (mis)used as suppositories.

Chronic inflammation looks different under a microscope than acute inflammation. OTOH "chronic Pouchitis" means something rather different, at least in terms of how it's commonly used. If you haven't really treated it before, I'd suggest thinking of it as "untreated Pouchitis" rather than "chronic Pouchitis."

Antibiotics long-term are much, much better for most people than Pouchitis long-term. That doesn't make them wonderful, except compared to the alternative.

Hi all, I'm feeling utterly deflated at the moment, my health is horrible, and we've had 2 deaths is the family...I'm feeling worried and scared and backed into a corner.

as is stands I've been on antibiotics for I think 3 weeks (I week flagyl and 2 weeks Cipro, and mesalasine suppositories for 2 weeks to. I think the bleeding has almost stopped, but the frequency pressure and urgency has gotten worse it's so terrible, I can't sleep at night it's like every half hour sometimes 15 minutes, is there any hope? I just feel I'm taking the medication and it's still not calming down, it's like this constant burn and pressure and I'm just home bound now, it wasn't so bad even straight after the surgery!

any help would be appreciated

thanks, sally xx

Also I forgot to say when I go I have to strain involuntarily, and it hurts so much to bear down that much and also I'm still having to almost pull the buttocks apart to go to pop, the first wave of stool comes out then after that it's that strain and then i have to help things move along, I just don't understand what's happening

Sally, it sounds like the antibiotics may not be doing you much good. Perhaps a different one would work, or perhaps something entirely different, like an antispasmodic (Levsin or Bentyl) would be worth a try. Other possibilities for relief include pelvic floor PT or repair of some undiagnosed structural problem with the pouch.

This is starting to sound like a fissure, with the spasming sphincters and intense pain during movements. It would also explain why the antibiotics aren't helping. The pain actually triggers the spasms and the urges that lead nowhere. Take hot sitz baths at least 4 times a day. Ask about the various topical treatments for fissures. Fiber supplements can help by absorbing the bile acids and thickening the stool. Fissures are easy to miss, even during a scope.

Jan

Thanks so much Scott and Jan, I will definently mention the idea of antispasmodics, your right the antibiotics don't seem to be doing anything. 

Jan, with a fissure is it a tear in the anus? Because that Definently makes sense when I go to loo, sorry for this detail again, I have to use my hand to pull apart the buttocks and then strain to get a tiny bit of stool out, when I do this i notice blood on the issue always on one side and that's the side I have pain on when I go to the loo and it strings like hell generally to. If it is a fissure, what could urgency and frequency be down to? Because that's just gone mad at the moment every hour or so I'd say I need the loo and just a bit of stool, sometimes a bit more never a lot. 

I was told if symptoms settle after 2 weeks to not take the further 2 weeks of antibiotics (I was given 4 weeks worth in total) but the symptoms are the same or worse, do I carry on with the antibiotics? And I've got 6 weeks of suppositories for the cuffitis to.

very confused about what's going on and what to do

thanks in advance 

Sally xxx

Sally, if you're unable to pass more than a little at a time, you may be nearly full right after you use the toilet. This would explain the frequency - you have to be able to empty your pouch to reduce the frequency. If sitz baths (as Jan suggested) calm things down the urgency might be reduced. The straining and pulling may be making things worse. Have you tried fiber?

Yes, a fissure would definitely lead to urgency, frequency, pain, bleeding, etc.

Jan

Thanks again Scott and Jan, 

Scott, I started taking fybogel yesterday I'll stick with it hopefully it will help and I'll give the sitz baths a try tomorrow to

Thanks for confirming about fissure Jan, I see a registrar at hospital on the 11th of Janurary and I'll definently mention this to them, although they seem to always dismiss me which is quite upsetting

it's becoming really miserable it's 4 in the morning now and I've been up 7times this night I've ended up sitting on the sofa now because I feel when I lie down it gets even worse!

Thanks for the help and advice 

Sally xxxxx

Hi sally. My first question is what are you eating? I  can't tolerate grease, spice or dairy. I also discovered that anything with grit or grains, seeds or insoluble fiber makes me go sometime for days until it's cleared out of my system. Oatmeal helps drag out bits and pieces that have gotten stuck in the folds. Right now since you are so miserable  try a liquid diet for a few days. Hopefully things will settle down. Antibiotics give me diarrhea and yeast in vagina and anus. I used vaginal yeast 7 day cream in vagina and anus. Also if you're taking antibiotics you must take probiotics to replace all of the good bacteria being killed off. I do enema flushes with distilled water, never tap water, and pure aloe vera juice. Either 50/50 or 1/3 aloe 2/3 water. Be very careful if you do enemas. Your doctor's will tell you not to do any of these things. Last if there's no yeast infection pure liquid lanolin is an excellent barrier.

I don't take any drugs. They all cause more problems in my opinion. I've had my pouch for 24 years and I have gotten to this point after I took matters into my own hands. I feel better and have less problems without the drugs.

Good luck sally and God bless.

PS All of my doctors are mad at me. Lol. But that's ok. I feel great!

Jo

Hi jo, 

at the moment I'm eating bananas, potatoes, rice sometimes, plain live yogurt, avocados that's literally about it, I'm so scared of eating anything else I haven't moved passed this basic stuff!

im taking vsl3 and another probiotic milk drink called kefir, I'm also taking fybogel (but today is only the second day of that) 

I've been looking into enamas for a while but how do I do them? I hope that's not a stupid question, do I need to buy something to use to sort of flush things out?

wow ,24 years that's amazing, did you ever get any problems with poi hits or cuffitis or any other issues? And how did you get back on track? 

I really don't want to be on medication but it just seems even in it I'm still struggling, I've also got a patch erathema nodosum on my shin which apparently is and extra manifestation of intestinal disease! So more problems which they don't know where to start with!

lol made me laugh that the doctors are mad at you, I hope you continue feeling great 

Sally xxxx

A number of people have done well using enema flushes to help empty the pouch, especially at bedtime. But I have never heard of the need for distlled water. As long as your tap water is safe to drink, it is fine for an enema. You can use a Fleet type enema bottle. Just pour out the saline and fill with warm tap water.

Some people get diarrhea as a side effect of antibiotics, but most of us wind up with a thickening effect. 

The main thing to keep in mind is what works for one may not work for all. This is why it is good to share ideas to try. For example, I am fine with spice, grease, nuts, and insoluble fiber, with the exception of large quantities of mushrooms. My pouch is over 20 years old.

Jan

I'm constantly learning new things as well! Who said old dogs can't learn new tricks?

Distilled water is not a necessity. It's a choice. I know for sure that our drinking water has bacteria in it. My city sends us annual reports that say so. I  choose not to introduce it into my already compromised pouch.  Use your own discretion on this one.

I miss eating all of those foods you enjoy!

To be clear I'm not a doctor, medical person,or authority on this subject! I'm just another person suffering with this disease like everyone else and want to share some of the remedies I've discovered that have helped me. Who knows, maybe something that has helped me might help someone else, which is my only goal.

Good luck, God bless, and good night! I'm going to bed!

Jo

Thanks Jan and jo, I'll definently look into the enamas. I'm just getting really worried because I'm on Cipro twice a day and mesalasine suppositories at night and things just aren't calming down, I fact I was better straight after the op. I've been told I have mild chronic pouchitis and cuffitis which is active and quite bad. I'm very careful with food literally eating like I'm ill, I'm taking vsl as well, I was taking kefir but I've decided to stop for a week to see if the diary in that is causing the constant pressure down below. 

I had my op in 22nd October 2015, so it's been 2 and a half months. Is this stuff normal for now?

Shouldn't I be feeling a little better on the antibiotics and suppositories? Or has my body become used to them like the uc drugs?

does this all sound like my pouch is failing?

thanks for all your help and advice

sally xxxx

Sally, if Cipro isn't helping you then it might be time to try a different antibiotic. Flagyl is usually the other first-line Pouchitis med, but Xifaxan, Augmentin, Levaquin, and several others are also used. If you have a stricture the antibiotics won't help much until it's dilated. If you have a fissure there are also treatment options: sitz baths first, but also nitroglycerine, nifedipine, and even Botox injections. 

Are you being treated by a surgeon or a gastroenterologist? A gastroenterologist will (often, though not always) have more patience and a bigger toolbox for non-surgical problems. Unfortunately not all gastroenterologist a know how to manage J-pouch issues.

Sadly there is no cure for these diseases we are suffering with.  The doctors are treating the symptoms.  Unfortunately they don't know what works and what doesn't as each of us reacts differently.  There is no one size fits all.  Listen to your body.  If the medicine isn't doing any good I say stop taking it.

Jo

Don't be a renegade though.  Talk to your doctor.

Jo

Hi Sally, sorry to hear you're having a rough time. I didn't have time to read all the responses, so if someone has covered this please ignore. I had nearly exactly the same symptoms.  I won't go over everything that happened to me (long story) but I will say doctors focused on mainly on things like strictures and said things like "healing period" or "cuffitis" it turned out that I had two major mechanical problems from the initial j pouch procedure. 1) was rectal stump was too long 41/2 centimetres, you don't want anymore then 2cm I'm told. 2) hairline leak at the anastomosis site. (These don't always show up on the normal radiological studies they do before takedown) basically I felt fine enough coming out of surgery but gradually got worse over the next few months and eventually got very sick and had to have a temporary ileostomy put back. I had developed a perianal abscess at this stage which they mistook for chrons disease. I left those doctors and after a LONG period they ran tests and found out that the leak had caused a fistula track resulting in a perianal abscess and withdrew chrons diagnosis. I had been sick for months before I saw any abscesses. This caused the pressure in my rectum, trouble emptying and inflammation of the cuff. Sorry I'm trying to keep this short! To diagnose me they ran a proctalspectogram or defecating spectrogram and multiple MRIs of the pelvic region. By the time they figured it out my entire pelvic cavity was covered in infection! But they can set you right pretty quick once they know the problem.  Anyway maybe something you may want to look into! I had to ask for the above tests, doctors never bothered. Hope you feel better soon!

I know exactly what all of you are talking about.  I have experienced just about everything ask of you talk about.  I think I had one of the first J-Pouches.  It has been over 30 years of ”fun”.  

As far as the burning I had that taken care of with a prescription for a salve.  It contained Phenol, Menthol and Zinc.  It was fantastic until they stopped using Phenol.  Now I make my owen with: 1 tube Calmoseptine, 1 tube Zinc oxide and a little bit of Petroleum Jelly.  Seems to coat and stay... Just pat dry after emptying.

I stay away from Broccoli, Cabbage and other veggies that cause gas.  If I do eat them once in a while I only ear a small amount.

I have been wearing a type of Depends (a less expensive brand) and put tampons on the inside.  If I have really bad leakage.... which always seems to happen when I am out shopping.  I carry a wash cloth and stick that in the ”depends”, that may be gross but it works great.  I just throw the cloth away when I get home.

If you have pouchitis; I have found for myself: Cipro 500mg morning and Flagyl 500mg morning and one at night.  I had one bout that lasted almost a three weeks.  I now take a probiotic VSL#3; 3-4 up to 2 times a day.  Too much and you can have constipation.  That is not too much fun either.

Last but certainly not least.  I have had so many bowel adhesions I have lost count.  They started right after surgery and I have them atleast one to two a year for the past 30+ years now.  Believe me you DO NOT WANT TO WAIT when you have one.  I have avoided a few by taking Valium when I felt them coming on.  I can’t believe some surgeon had said to me he could operate and take the adhesion out.  Right! now you have more scare tissue to have adhesions.

I had a colostemy prior to my take down.  Even with all the pain and problems of a J-pouch.  I am glad I made the decision to make the change.  My colostemy came off one time when I was flying first class from Maui to San Francisco.  I had a window seat and had to climb over someone to get out to the bathroom.  I hated when the seatbelt sign came on and I had to climb back over that person.

I now have Prostate Cancer for over seven years and am on hormone therapy since they cannot do any radiation.  Hopefully I will have another few years left in me.

Good luck to all of you.  If you have any questions please text me.  I will be more than happy to answer any thing you may want to ask.  I certainly have had the experience.

Thank you so so very much for all your replies, Scott, jo, greamek, and duane, it means so much to hear your experiences and not feel so alone in this all! 

I've not been to well so I haven't been on the forum to reply for a while. But I had pouchoscopy about 2 weeks back and I went to get the results today...I have mild cuffitis, the next bit I don't completely understand...there is a change in the pouch mucosa but no acute pouchitis. Does this mean I have mild pouchitis? Or what's the change mean? I asked a lot but he just said you don't have pouchitis. 

I was feeling really bad I just couldn't get off the loo and the bleeding as getting bad, so basically I ruby back to just potatoes and bananas this is day 6! I added corn chips yesterday and they seem to be OK to, the bleeding has almost stopped but i still have a little,l which I think is when I strain and from a fissure. Also my output is thicker and I've gone from going 15 plus times to 8 times in a 24 hour period! I'm adding in one new thing in every week and seeing how it goes, I'm still on one more week of Cipro but I really don't think it's doing anything for me but I've been told to finish the 4 weeks, and I'm still using mesalasine suppositories which i think I'll carry on with for a little while longer. 

I've been taking vsl 3 twice a day, and kefir in the morning I really think they are helping a lot! 

I'll keep you posted on the new foods I introduce maybe it'll help someone with the same issues

thanks for all the help, it's great!

sally xxxxxx

Hi sally. I started to have frequent stools and my remedies weren't working and began developing butt burn. Seemed like it was going to get worse so I started a round of cipro  (7 - 10 days) which usually will clear it up. After I then follow with probiotics for a couple of weeks and yeast cream vaginally and around the anus to ward off any yeast from growing. This usually works for me until the next whatever. 

I'm planning a visit to the Cleveland Clinic as soon as I can figure out how my new health insurance works. I want an opinion on reversal!  Will let you know! 

Good to hear from you sally. Your doctor's should answer your questions and help you to  understand what's going on! Is it possible for you to see another doctor and get another opinion? 

Jo

Cheering all of you on.  I'm an old timer too like Duane - 30 years.  Seen it all.  Knowing what I know now, I would have gone to CClinic early on - didn't know a thing about it back in the day. Duane - you're another one who has seen it all and now the prostate cancer - but 7 years and you are here!  And, you jut do what you have to do.  I have not had to do depends yet, but have done sanitary pads.  But, if depends becomes necessary, then depends it will be.  Jo - I truly hope you feel better soon.  As Jan's wonderful tagline says, "this too shall pass."  A great mantra.  And it does - and it goes so quickly.  I am kind of corny (I know what) but I am really proud of all the poucher brothers and sisters out there.  We suffer quite a bit - but no one can see it.  And we just march on and try so hard (no other choice).  But, I agree with Duane - it has definitely been worth it - eventually everyone has health struggles - we got selected to have the lovely GI issues and pouch.  I don't mean to be flippant - when you are hurting or scared, it's just awful.  During those times, I usually had some valium or something for the anxiety - such as during hospital stays for blockages or whatever.  I just asked and always got that and it helped - the "oh no - am I going to survive this one" feeling is awful and valium helps. That and dilaudid if in pain - lots of sleeping in the hospital - that's what got me through those awful times.  HAng in there.

I hope you feel better soon jo, and anger I can definently relate to the 'oh no I am going to survive this one' feeling!

I was feeling ok when I last posted, then I ate a few things that I don't think were good choices, seeded bread, cheese, a tiny bit of mild curry and rice and I can assume what followed and still is was down to that. I'm back in the loo about 15 times, pressure urgency the lot! This time though I've got a constant burning feeling in the anus which is so intense when I go to the loo I have to cry into a tissue, I've 99% sure I have a fissure and it feels deep. It's bleeding the blood is always on the same position in the tissue, and that's where this awful pain radiates from. The fissure is making it unbearable to hold onto stool do whereas I normally could have held on happily I now have to go to try and release the burn.

WHAT DO I DO???? I'm absolutely and utterly exhausted, I can't insert the suppository for my cuffitis either because it's to painful. The fissure is killing me will it ever get better?? I've lost 5kg in about 2weeks and feel so so weak I just sit all day trying to close my eyes big the second they open its back to the loo to cry into a tissue

thanks in advance guys

sally xxx

get nifidepine gel for the fissure, I think an alternative fix is some kind of nitroglycerin ointment. you have to address the fissure it probably stands zero chance of healing without treatment. both of those are prescriptions. if the fissure was mild something like A&D ointment might help, but it sounds like you are way past that.

then after you've done that, I might suggest a closer self examination of your food choices. we all wander off the reservation as the saying goes, but the farther we wander the more lost we get.

Sally - hang in there - I wish I could fix it.  Hope you have some good support around you.  those times of being stuck by the loo are just awful - but I hope it passes really soon. 

Thanks so much for your help and support deweyj and Angie xx i had such a bad night went to loo more than 10 times feel awful and exhausted, do fissures heal or is it rare that they get better? I'll make and appointment to see my doctor and get those ointments asap dewryj, really hope it helps. It just burns so badly feels like it's on fire constantly now, do people loose the pouch to fissures? And I'm sure my cuffitis isn't helping the whole issue!

sally xxxxxx