Have you been treating for cuffitis this entire time too? The burning and frequency makes me think that may be your problem. I didn't do well with Hydrocortizone and instead use Canasa or mesalamine suppositories to treat it. Are you also suffering from irritation from wiping too much? Are you cleaning with water after every BM as well? If you are doing all and using something like Calmoseptine you need to see your doctor again. One more thought, are you using Metamucil, or a similar product, and/or Imodium or a similar product? These should slow down your BM's and thicken them up so your frequency would decrease.

I hope you receive so help soon. Hopefully you've been through the worst of it.

I use Imodium ...2 before breakfast, 1 for lunch, 2 before dinner, 1 at bedtime. I have been on the Hydrocortizone suppository almost constantly since May 15th (date of pouch scope). I use Calmoseptine and recently put a 1% hydrocortizone ointment into the mix several times a day. When I can, I blot with toilet paper and water, but cannot due to working full time in an office setting. At one point early on I tried Canasa, but the bleeding came back very quickly, thus went back to hydrocortizone suppositories. When I spoke to my surgeon's PA at Cleveland Clinic, she said she has only seen one person (also male) in 16 years with the severity of symptoms I have immediately following take-down (40 bm a day, bleeding, pain) then scoped and diagnosed with mild pouchitis and moderate cuffitis. This person was also a male and has elected to live with these issues and keep the jpouch. My UC was severe in my rectum, sigmoid and descending colon which obviously did not respond to a slew of mesalamine options and steroid options thus why would the cuff (the same tissue left to connect the jpouch to my anus) respond now? When I asked about jpouch complications I was told about pouchitis and antibiotics clears this up. They were too optimistic and said nothing about irritable pouch syndrome (~20-40% Bo Shen paper), cuffitis, having an unhealthy diet (was told I can eat what I want...several doctors from several institutions), etc. Life was much better with the end ileostomy. Ugh.

Have you tried using personal individual wipes at work instead of water on TP? They would be easy for you to stick in your pocket, like individually packed baby wipes. I also have a portable bidet, which is a squeeze bottle with a nozzle, I fill it with warm water and use it to wash off after BM's when in places not at home. I realize this might be hard to do at work but it isn't that big and comes in a sack and the nozzle stores down inside the bottle, so it's around 6" tall.

I wasn't told about IPS either and I didn't read about it in the handbook I was given either. I didn't even know there was such a thing until I went to the Mayo Clinic, stands to reason as I had IBS as well as IBD/UC. I take an antispasmodic when it's really bad but it makes my vision blurry so I hate to take it. I am also taking Norco daily for adhesion and pouch pain.

If you want I will post the link for the portable bidet from Amazon, it costs $14. I still use Anucort suppositories, in addition to Canasa, when cuffitis is burning, during the day. I've been told to do whatever it takes. I've also had c.diff infections. Have you ever been tested for that? They are a lot like everything else and I can not really tell them from a bad case of anything else that makes me have 15 BM's a day. I do notice that Imodium doesn't help much and I run a low grade fever when I have them.

Fishon, your pouch issues sound ALOT like mine. i actually havent been off cipro or flagyl since the takedown and its been 5 months..whenever i tried to come off of it things started to get painful and frequency increased slightly. i went back up on my dosages, currently on one pill of cipro and one pill of flagyl at night before bed. have been fine for the most part. just not sure about how long i would be able to stick with this regime. I'm out of refills and only have the rest of this month left so i will need to talk to her about what to do since i know how things start to get as i come off of them.

Fishon,

They strip away all of that Mucosa, so you don't need to worry on that front that your old ulcerated lining is still in there, it isn't.

Hang in there, that first year can be brutal. The PH of the stool is high (a Base, like Battery Acid), those bile salts bite.

Takes a lot of work to keep the tissues intact and the attitude good when everything is going wrong.

Take Care,

MK

dgtracy, I just finished 10 days of Xifaxan and 16 hours later I am having burning lava diarrhea. Going on cipro again tomorrow when the pharmacy opens. Problem with cipro long term is that it can/will cause tendon damage. I was happy and active with the ileostomy, only 3 leaks in the 9 months I had it. Once was while on a plane while the flight was taking off the runway. I pinged the stewardess and was granted access to the bathroom while we were still climbing. Had my supplies, got all cleaned up, no worries. Sorry you are dealing with the same issues. This sucks & I am seriously considering the reversal to an end ileostomy for the remainder of my years.

Mental Kase, My 1-2 cm cuff still has the mucosa which has ulcers and is classified as "moderate cuffitis". Just has a second scope of my pouch and the cuff has some unexpected cells. I don't have the report in front of me, but my GI at Johns Hopkins said they are suspected to be precursors to the precursors for cancer . . . but it is a monitor situation. Yippy.

TE Marie, One of the issues I have is the poor preparation and information regarding the slew of issues that are present for the pouch and cuff. I was told pouchitis was the concern and antibiotics takes care of it. Well not for me. It is easier to manage an end ileostomy that my current state. I have a demanding career which is now hampered along with my family and social life. Ugh

I have a friend that went back to a temp ileo after just 7 months as he couldn't do his physically demanding job with chronic cuffitis and they left his j-pouch in place for the time being.

Fishon,

I hear you. Not sure why they told you Antibiotics alone would take care of Cuffitis or Pouchitis. That is the case for some but not all.

I always need at least a round or two of Prednisone in combination with Cipro to get things under control, and now with Crohn's and Biologics on board I need all big guns firing -and quickly- to get it under control.

A J-Pouch that has issues is no picnic as you know, but they can usually be brought under control. Everyone has such a unique experience with their Pouch that generalizations are not possible. Some respond to Antibiotics alone, others to Topicals, some don't respond until serious immune suppression takes place. Again, hang in there and don't beat yourself up if you need to dial back your activity during this crisis, you can't be expected to do your job to the fullest if your condition is getting in the way.

MK

quote:

Problem with cipro long term is that it can/will cause tendon damage.

Tendon rupture is rare, with or without Cipro. If you exaggerate the risks of treatment you'll drive yourself crazy and tend to avoid effective and appropriate ways to deal with issues.

MK, I have called my GI and emailed a reminder sheet of what I have tried and that I need a binary decision tree of the path forward. BAsicallly, try this and expect this, if not working then try this and expect this, if not working try this . . . I cannot continue to get poor sleep and be non-functionaly from late afternoon until I go to bed. I will not be taking immunosuppresent drugs to "save" my jpouch. I tried Remicade when I had my colon and no response. I am allergic to Methotrexate. Dialing back my acitivity is not by choice and it has been this way for 5 1/2 months. I just need to get on with life. Also my GI said chronic pouchitis has been linked to the development of Crohn's. I had a clear clinical diagaonsis of UC and geneitc testing which came up as UC (other test result possibilities were Crohn's and General IBD).

Steve, My knowledge is the rate goes from 1/100k to ~1/25K for tendon ruputure and the rate of tendonitis is at least the same. The main point is I can live drug free with an end ileostomy. I have zero other health issues except my cholsteroal when from 156 total to 210 since I got UC and had to cut out almost all the good healthy fresh fruits and vegeatables because they set of my UC or make the jpouch issues much worse.

While it does make sense to consider ileostomy to be free of drugs that may cause adverse side effects, it is by no means any sort of gaurantee. If that is your only reason, then it may be worth rethinking. However, if you are unable to get the cuffitis/pouchitis under control to your satisfaction, it is a reasonable approach.

The reason I bring up the issue about medications is because you may still need the vary same ones eventually.

A decade after colectomy, I was diagnosed with enteropathic arthritis and wound up back on Azulfidine and then biologics (Enbrel, Humira, and now Simponi). Sometimes I need a short course of prednisone. This is independent of the bowel disease in my case, and ileostomy would not have made a difference.

I am not saying that ileostomy is not a good choice, but that you should not associate your future happiness on not taking drugs. None of us know what our future holds.

Jan

Fishon,

In your case an end Ileostomy may be the best course -but as Jan says there are no guarantees with that procedure either. Inflammatory Bowel Disease tends to be a systemic problem affecting the GI tract as a whole. I hope you get some answers from your GI and get some relief -at least a respite that allows you to consider your options from a place of non-crisis.

Best,

MK

**To illustrate the different experiences we all have around these issues. For me, I hated my Temp Ileostomy. Not just hate, I refused to even consider it as a solution unless I was dying. I felt like a freak, a monster with that thing. Going to the bathroom from my hip made no sense to me in any way, shape or form. I could not get my head around it. I was glad to suffer almost any procedure or discomfort or complication to get rid of that bag. In the shower I would look down at that squirming slug of bowel and it made me sick. Age is a factor too, I was young, active and dating and an Ileostomy was NOT going to be my life. My J-Pouch has been at times a nightmare, yes, but I made my choice long ago and I will keep this Pouch until I'm on deaths door with it -then and only then can they rip it out.

It's very hard to balance risks. It's hard to estimate precisely, but the risk of peri-operative mortality is almost certainly higher than the risk of a tendon rupture from Cipro. I understand how marvelous it feels to be medication-free, I really do. But tendon rupture is a distraction here, not a significant consideration.

Scott, Point well taken. Cipro also turns me into a zombie. That is ok at night as I take it just before bed. During the day it makes it very hard to nearly impossible to focus at work. I am a project manager for global Ag company with team members spanning the globe. Being a cognitive slug is depressing in and of itself.

Fishon, Is your GI at Hopkins someone you would recommend? Is he/she experienced with j-pouches? I guess we need to find a new GI for my husband and Hopkins would be FAR easier to get to than CC! :-)

I'm so sorry for all the problems you're having. Today is just day 5 post-takedown for my husband so we're just starting out.

Unacceptable side effects (e.g. being turned into a zombie) are a whole different thing from potential adverse reactions. No one should live with unacceptable side effects unless they have no better option.

I have just started out with my GI at Hopkins thus I do not want to recommend him at this point. He is a replacement for Christina Ha who was awesome, but is now at UCLA . . . way too far. Hopkins is very good for GI overall. Remember to shop around. Sorry I could not be of better help. Good luck.

quote:

Being a cognitive slug is depressing in and of itself.

I have never had this reaction from cipro, but I do get it from some of the anti-spasmodic drugs like bentyl and levsin, so I only take them at bedtime. Perhaps lowering the dosage might help? Or taking less in the morning and more at night? You can also try substituting levacquin which is in the same antibiotic family, or use other antibiotics in other antibiotic families. Sometimes creativity is needed in developing an effective treatment strategy using these meds.

Fishon, I can completely sympathize with your predicament. Your issues are about identical to mine. (once recorded 44 BM's in a six hour period from midnight to 6am.)

There have been several treatments which helped - or appeared to help - for a while, but things inevitably swing back. I'm sure you know the routine, so there is no sense in wasting bandwidth detailing every failed step of the way.

The doctor did warn me beforehand, though, that if things went well, I could expect 6 BM's a day. If things were not as well, it could be more. He didn't say how bad, but he didn't paint an exclusive picture of honey and roses after takedown, so I never felt betrayed or lied to. Every procedure I chose with full knowledge that it might go wrong or might not work well for me.

I think that is the major difference in our cases. It appears that your doctors were too optimistic. Maybe they were concerned that you might be terrified of the procedure you were facing, and didn't want to worry you.

But is that fair? Is that a decision they have a right to make? I don't know. I don't want to judge doctors that I have never met, but I'm glad I had realistic information to prepare myself.

Maybe they had just been lucky and never experienced a less than ideal outcome so thought it couldn't happen to them - that they had the "Midas touch." I wonder if certain "rock star" doctors don't have an ego out of proportion to their relative skills.

All I can do is to look back at the horrible state of my health with a diseased colon, and be thankful that the doctors saved my life. No matter the quality of life I have now, it is life, and that is better than the certain death I faced.

Good luck, and don't lose hope that something may come along to provide a solution.

PDXDavid, According to the PA who has been in this field for 17 years, I am one of two people she is aware of that started of with 40 BM a day and mild pouchitis and moderate cuffitis. He never got to "normal" and has elected to put up with his issues since he hates the external bag.

I think my doctor was too optimistic based on his track record, but every patient is different.

Fishon,

Yep. My doctor has neer met anyone who had these levels of problems except me. We probably represent less the 5% of the results.

It's a crap shoot. Pardon the pun.

I find that the most effective treatment is opiate pain killers. (That is not a viable long term solution, but I'm just being honest. It works the best.)

The pain killers stop the spiralling cycle of pain, cramps, spasms, and the pain from irritatin that leads to more urges. When I have taken oxycodone, my I can feel poop in my pouch, but I have no urges, and when I do get an urge, it is mild and I can actully ignore it until I decide it's time to go. No other treatment gives me that.

I'm not advocating opiate pain killers as a long term solution, so those of you who are prone to hyperventilating and getting on moral high horses, don't. Just stating facts.



.

Re: Narcotics,

I've had Narcotics in my bag of tricks for almost ten years now, just a reality that started during a major Pouchitis event that would not abate where I thought I would lose my mind if I didn't get some pain relief and sleep. However, now that I have Crohn's, Narcotics are contraindicated, per my GI Docs and published literature, argghhh. In moderate doses my Dilaudid is still effective but above a certain dose I actually become ill and my condition deteriorates. Very disgruntled about that... Everyone has got to do what they need to do to survive, and if pain meds are needed, so be it.

MK

Mental Kase,

Yes. Opiates (including lomotil and loperamide) can cause toxic mega colon in people with their large intestine intact and active UC. Not sure about crohnn's but I imagine the same applies.

That is very important to note. Thanks for filling in that very important lapse in my post.



.

Sounds like a mess. I lasted about 18 months had pouch disconnected and 6 months later excised. It sounds like your problems are basically inflammatory in nature and therefore you have to get the inflammation under control. Really only two options drugs and surgery (diet might help some). Generally one exhausts the drug option and then goes to surgery. What exhausting the drug option means is different for each of us. Once we start messing with our system there are no guarantees but my end ileo has really freed me, I basically can do anything I want. That was not the case with the J pouch. Yea I would rather have one of those good functioning J pouches but compared to the J pouch I had its like a cool breeze on a hot summer day, wonderful. Tincture of Opium might make your life a bit more bearable.

I have IPS and per Dr. Loftus, at Mayo, I take up to 8 Loperamide daily, sometimes take antibiotics and take dicyclomine as needed. I don't like the dicyclomine as it makes my vision blurry. I have also been taking Norco for over 2 years for abdominal pain. Depending on how much pain I am experiencing I take between 2-4 pills per day. It may be common belief that I is only to be used as short term pain relief but actually it is used for chronic pain relief. The danger is if the patient increases the dose or uses the medication to get 'high'. I don't get high, it takes the edge off of my pain.

I also have adhesion abdominal pain and pain from chronic cuffitis. I use Canasa nightly and when needed Anucort in the mornings to combat cuffitis.

The following is a link to a good paper written by Dr. Shen and others at the Cleveland Clinic in 2005. It discusses problems with j-pouches, including pictures of pouchitis an cuffitis. On around page 9 it discusses IPS. I believe there are others on here that have undiagnosed IPS. It has similar symptoms as pouchitis - increased frequency, watery stools, abdominal pain and cramping and perianal or pelvc discomfort but no inflammation of the pouch. It doesn't have the other pouchitis symptoms that can happen like nausea, vomiting, fever, anemia etc.

www.dept-med.pitt.edu/gi/fello...EADINGS/shen2005.pdf

chiromancer, What were the potential complications with a full reversal as explained to you? Why did you have the jpouch left intact, then removed 6 months later? I have a surgery consult on October 28 with Dr. Remzi at Cleveland Clinic. He did my other surgeries.

TE Marie, I was seeing Dr. Shen but I live 400 miles away and was having difficulty reaching him so I now see a GI at Johns Hopkins. You sen like you have a lot of issues with the jpouch. Have you considered a permanent end ileostomy? I have a surgery consult for a full reversal on October 28 with Dr. Remzi. I have been diagnosed with IPS, pouchitis and cuffiits. I eat 6-8 Imodium a day and have tried cipro (about 12 weeks worth) and xifaxan (one 10 day course) and currently am using pepto as it seems to give nearly the same result as cipro. I do not want to be eating pills to keep something my body does not want.

chiromancer & fishon,

I was wondering if anyone has ever had a temporary disconnect, in order to give their pouch a "rest." Either a loop ileostomy or a complete disconnect with an end ileostomy.

Kind of like hitting the reset button.

I imagine the major risk would be more or worse strictures at the reconnect site.


I've never thought it through thoroughly, but it has crossed my mind.



.

quote:

What were the potential complications with a full reversal as explained to you? Why did you have the jpouch left intact, then removed 6 months later?

Complications aside from all the regular surgical issues were possible impotence and urinary incontinence. The big problem is that the area they are working in to remove the pouch typically (but not always) has a lot scar tissue which makes avoiding nerves tricky, they simply cant see well. It is much easier to do a proctocolectomy and end ileo than a J pouch excision and end ileo. They put a temp stent in to help avoid nicking/cutting the urethra during surgery. My surgery went well, it was done laparascopically and took 4 plus hrs. You need surgeon that has lots of experience to do this. The one twist on my surgery was that I had them leave the anus intact; it is typically removed and sewn up. So far this has proven to be a good decision as I recovered very quickly from surgery.

Leaving the pouch in place was a mistake. At the time I just didn’t want a big surgery which J pouch excising is and wanted relief. The disconnected J pouch gradually began to produce excretions, lots of them that were difficult to control. They didn’t burn but were difficult to deal with. Also the J pouch has to have its own blood supply and this with me, put tension on the intestine and I had a really crappy stoma. It was difficult to deal with, as it was nearly flush to the skin. They redid the stoma when the pouch was removed and now I have no problems. You want at a minimum 3/4" off the skin to the opening of the stoma

quote:

I was wondering if anyone has ever had a temporary disconnect, in order to give their pouch a "rest." Either a loop ileostomy or a complete disconnect with an end ileostomy.

I was offered temp loop as a option but I had had enough. I really didnt see any hope for my pouch and was "done" If you do this I would probably go with a loop ileo as my experience with the end ileo and pouch in place was bad. In the end its just more surgery and these surgeries take a lot out of you, at least at my age (61) they do (did).

chiromancer,

Those loop ileostomies are problematic. Mine - after second surgery - sprayed fecal matter directly back onto the skin - it was aimed back at me, rather than outward. Not uncommon.

It lead to frequent seal failure and a fungal infection, plus almost weekly need to "burn" granulomas around the edge with silver nitrite. Ouch.

I wouldn't want a loop again, that's for sure. I'd rather risk a stricture and have a clean end ileo, if I had a choice.



.

quote:

Those loop ileostomies are problematic. Mine - after second surgery - sprayed fecal matter directly back onto the skin - it was aimed back at me, rather than outward. Not uncommon.

What you say is true, though I personally had no problem with my loop which made the prospect of going to an end ileo a much easier choice. I could have lived with my loop and my end ileo is better. The problem as I tried to explain with the end ileo pouch left in place is the excretions, I thought they would be no worse than what I had with the loop, the typical mucus that many complain about. That was not the case, The pouch is basically starved for nutrients ( I believe a certain amount somehow get by in the loop so the excretions are much less) and goes nuts I could not find any thing to stop the excretions and they were very difficult to hold in so you end up going to the bathroom all the time. Many people but not all have this problem with disconnected J pouches

fusion,
I am in no way ready to ditch my j-pouch. I've learned how to control my problems. At first my local doctors didn't know how to diagnose and control them. There are people, many on here, living with more problems and taking more medications than I am. Many of those with chronic pouchitis constantly rotate antibiotics.

Since my Mayo GI diagnosed me with IPS vs Pouchitis I take antibiotics much less than I was. Since I have gotten my c.diff under control I don't take antibiotics for it. I believe the VSL #3DS and s.boulardii probiotics I take daily keep pouchitis and c.diff away now.

I do need to use topical suppositories for cuffitis but as long as I don't miss taking them for several days it is manageable.

It has taken me almost 3 years to learn all of this. I see you had your take down in April of this year. I hope you are sure that your pouch is not just still in the healing process before you give up on it.

I've been told I have a well constructed and functioning pouch when performing pouch scopes. The only visible and biopsy problem is in the cuff. The pathology reports clearly state Ulcerative Colitis. They call it cuffitis but lets call it what it is, it's Ulcerative Colitis ON the cuff. They lied to me, I was not "cured by the operations."

I am going to leave well enough alone, for now. I had horrible dehydration problems with my loop ostomy. My diet is adjusted, I take around 4 Loperamide capsules, 4 Norco, 1-2 dicyclomine, 1 VSL#3DS and 2 capsules of s.boulardii along with my vitamins and supplements daily. I also have several other autoimmune diseases and syndromes to manage as well.

When grandma said to make lemonade when given lemons I never knew how much lemonade I'd be making.

We are all different, but alike, and each need to make our own decisions.

PDX David,
There are many people on here who have gone back ileo's while resting their j-pouches. You might want to search for those discussions. There are several people in the FB support group that have done so but I can't remember their screen names on here.

Better yet might want to start a new topic on this and you will receive responses from those who have done so.

It's a good question.