I also want to add that sometime I will pass clots of bright red blood. And I don't even realize I leak anymore it just happens and when I use the bathroom I notice I have to change my pad. It's just been so stressful. 

I had a J pouch for 30 years and experienced problems similar to yours.  I felt the same way as you do about getting stuck with the bag (pun not intended) and adapted the best I could.  I found that using a bidet significantly helped with the anal irritation as well as using a protective cream.  I reduced or eliminated foods that caused problems and wore a pad to contain leakage.  One thing I noticed was that stooling frequency decreased, sometimes substantially, when I was engaged in activities that took my mind off my bottom.  I was able to ski the Rockies for full days and only use the restroom once.  I had a full-time job and competed in horse shows on the side.

My thoughts about your situation are to make a strong attempt to save your J pouch. If the swelling inside is due to pouchitis, there are a number of different antibiotics and probiotics that you could try.  I would also consider getting a consultation with doctors who specialize in treating pouch problems.  Cleveland Clinic is well known and respected in this regard.

If you still are unable to obtain a satisfactory improvement and want your J pouch removed, there are two similar procedures that avoid having an external bag: the K pouch and the BCIR.  There is a lot of information about both procedures on the internet.  Due to recurrent high grade dysplasia in the anal cuff, I had to have my pouch removed.  I did my research and opted to get the BCIR.  The surgery went well, I had a fast recovery and now, four years later, enjoy a very good quality of life.  Please review posts on this forum for other suggestions and feel free to send me a PM with any questions you have.  Best of luck to you!

Bill

Thanks, Bill! Yeah right now I have aloe & vitamin E moist wipes that I use instead of toilet paper because I find that it is less brutal on the site. Also I have a big collection of  calmoseptine which does give me some relief. I think at this time I'm going to constrict my diet majorly to see if this helps. I would love to see if this at least allows me to be able to find something to do that takes my mind off of the situation I'm in, so that I can have less bathroom breaks. And thanks for the info about the k-pouch and BCIR I will have to look into those in the future if God forbid nothing else takes effect. Thanks again! 

It sounds like you were treated for cuffitis. When the first medication proved intolerable, did you discuss other options with your doctor?

if medications can't control the cuffitis, the surgical repair is called pouch advancement surgery, usually done with mucosectomy. It removes the rectal cuff that causes the problem. A very skilled, experienced surgeon is strongly advised. 

Yeah! I was treated with flagyl through an IV and then for home I was given methasalazine enema (probably spelt completely wrong), however this was the second time I had the enema and 4 hours after taking it I had horrible stomach cramps and violent vomiting and diarrhea. The first time I had this reaction it was at home I woke up and started vomiting for hours and when I finally had to go to the ER the doctors said that an enema medication couldn't cause a reaction like I had. That was almost 2 years ago then fast forward to June of 2016 I was in the hospital my C-reactive protein level was 140 and I had severe leakage and very frequent bathroom breaks. I was given flagyl again and the doctor on the floor who I have never met before wanted to do the enema and I told him was happens but they wanted to try anyway. So I did so and the same thing happened again, which they blamed on anxiety of a new medication. After my discharge the day before Father's Day I felt better after the antibiotics and now I'm in the same boat. I just keep going in the same cycle and I just want a solution that lasts a bit longer than a couple months. I have been dealing with the cuffitis since the day of my j-pouch surgery. 

the drug mentioned above is definitely spelt wrong! (my bad). It was called mesalamine. 

If you get this managed by inexperienced docs who don't know you the results are likely to be poor. If you see a knowledgeable GI regularly you can explore the various medical treatment options more methodically. Have you had a good rectal exam or pouchoscopy? Have you been told that you have cuffitis? What have you tried in lieu of the mesalamine?

The pouch advancement surgery is hand-sewn, and easy to screw up. If that were my next step I'd travel to a surgeon who has done many of them successfully. 

Well I have never seen a GI specialist for long and the one I had I can no longer see because he works through children's hospital. And the one I see now I don't believe she has a lot of knowledge of what I am going through. And I was never told cuffitis exactly just inflammation of the last little bit of rectum I do have. That's all they have ever said. And nothing besides mesalamine because that's all they want me to take besides oral antibiotics which don't help at all. 

I've had my J Pouch for 30+ years and, like @BillV , I'm considering getting a BCIR as my pouch is not performing as well a it used to. Mostly it's age related I think and I have been researching on reverting back t an ileostomy. The K Pouch creation and conversion seems to be more restricted for patient access globally . I'll be asking BillV soon for details by creating a post here so we can all access the information. Arrrgghh...getting off topic....

OK, firstly, Flagyl (metronidozole) is for the treatment of anaerobic bacteria and most issues with J Pouches (i.e. bacterial infections, proctitus, pouchitus) respond well to this antibiotic. However, after 20+ years of Flagyl being my go-to for issues, my leakage and symptoms didn't respond and I came to the forum for alternatives. The answer is quite obvious in hindsight, I had an aerobic bacteria and it responded immediately to Cyprofloxicin after a week of constant leakage. Cipro is much more suited for aerobic pathogins and so now, it's a mainstay in my treatment when I get various issues. (Incidentally, cipro is also a drug used for the treatment of UTI's which often happen when you have constant leakage.)

My first recommendation is go to your doctor and ask for a script for Ciprofloxycin and explain what I've explained here. My doctor was very happy to prescribe it. I explained I found the information on this forum and he was a GP doctor who I could approach, discuss my medical issues with and it was a joint effort sometimes with solutions. Doctors don't know everything and sometimes you must do your own research and be your own consulting physician specialising in your own condition. ( I have a favourite saying, "you don't know what you don't know until you go looking.")

Next is strategy with food. I have found that certain foods cause reactions and we all go through a trial and error period of excluding these from our diet. However, there are foods which help create bulk which then slows the motility down and absorbs the liquid which doesn't get absorbed by the bowel before it has to depart the body.

For instance, I make my own natural untoasted muesli to which I add oat bran as well as rolled oats AND instant oatmeal to the mix. No added sugar but I do add cinnamon. I eat this as breakfast and I also use it as a base for making Bircher style muesli. When I serve the muesli in either form, I add a teaspoon of Chia seed as it creates a gelatinous substance in the stomach which also helps to bind the stool. I have recently found Chia and, for me, it's amazing but you need to read up on it as there are side effects. (I laughed where it said it could cause constipation and did a bit of a fist-bump into the air. "Huzzahhhh!!!")

https://draxe.com/chia-seeds-benefits-side-effects/

http://www.webmd.com/vitamins-...iveingredientid=1224

https://www.bustle.com/article...ause-its-possible-to 

In addition, I also found information on this forum on psyllium husk and I take a dessert spoonful every morning before breakfast. *The best way is to add it to juice (you can use water too, but I find that a bit bland to take before my coffee on a morning.) It's best not to take it directly off a spoon as the husk starts to swell up immediately and it could pose a significant choking hazard. (*EDITED) Do a search in this forum for information using the search term psyllium husk.... but there are  links below also.

http://www.webmd.com/drugs/2/d...k-fibre-oral/details

https://www.j-pouch.org/topic/s...rganic-psyllium-husk

I also have a hot milk drink before bed each night based on instant oatmeal, course ground rice and chia. It's the bulking and slowing down of motility that I am primarily going for. 

By having a breakfast with bulking agents each morning, I could generally go all day without having to go to the toilet again.

The link below is a versatile recipe as you can change it to suit your taste. I like a sweet & tart mix so I use apple and cranberry juice, frozen or dried cranberries and my muesli mix plus I add additional rolled oats.

http://www.taste.com.au/recipes/7168/bircher+muesli

There was mention of using a bidet above and one of the best and easiest solutions is the bidet hose which can be screwed into the toilet cistern refill pipe (using a T joiner) so it can be used while at the toilet. ie you don't need to have a separate fixture. Below is a link which will give you the idea of what it is but also do a search on Google with the term bidet hose. (They have other names, the ....*cough*... most amusing one being bum gun.)  

https://en.wikipedia.org/wiki/Bidet_shower  

Now, regarding the spots of bright red blood. this indicates the problem is close to the rectum and with the amount of incontinence you're having, you could have an ulcerated area around the rectum which is bleeding when you are expelling stool. I'll state the obvious and say that bile/stomach acids are nasty. Barrier creams can help but even just petroleum jelly will create a barrier to protect the skin. 

You may need to arrange for a colonoscopy to see what's happening internally, I was experiencing some pain many years ago and it turned out to be the internal staples were finally being expelled by my body and some were creating small tears as they finally let go.

I could go on but this has been getting drafted all afternoon and needs to be concluded. Please ask questions and I'll endeavour to answer them.

Also, let me know what medications your are on, dosage and frequency as I may have information on that aspect of it. 

First action for you, go to your doctor and talk about cipro.

cheers

Liz

Thanks, Liz. I will definitely have to try some of your diet suggestions, and ask my doctor about cipro. As of right now, however, I am currently on no medication. I know that right now I just need to get back into the doctor's office and discuss a whole bunch of things and where I think we should go from there. 

OK, that gives me more to go on. I'll answer in full tomorrow as I've not got my laptop with me. 

Has your doctor discussed imodium or lomitol with you as options? Do some Googlefu research now and I'll give you the pros and cons of each drug tomorrow. You will probably need to get some of these from your doctor too.

There are some tips and  solutions here that hopefully will get this sorted out and give you more freedom and less stress.  

Cheers 

Liz

I'd advise against taking psyllium dry and trying to swallow it with water. That creates a real choking hazard. The powder is most easily mixed with water *in adequate quantity* by shaking rather than stirring.

@Scott F you are absolutely right, this is what I was advised when someone told me about Psyllium and I should have given more thought to what I wrote. I shall edit my post accordingly.

@Former Member As I mentioned above, I'm taking Imodium and Lomotil and I've been taking these separately or in combination for the last 30+ years. I'm currently on 6 Imodium per day and 4 Lomotil per day; split between a morning and evening dose. The reason that I take both is that after 30+ years my pouch is starting to be less effective and I'm having more and more issues with incontinence. This is why I'm now looking at the alternatives of going back to an ileostomy or opting for a BCIR (the latter being my preferences so far) By taking both medications, I'm reducing the likelihood of overdosing by either of them. Originally, I was prescribed 2 Imodium @ 3 times per day and I was on this dose for 20+ years.

There are many generics on the market but these are very common medications and some countries even allow purchase of either of these two drugs over the counter. I just have to say, IMHO, that I'm surprised that your doctor hasn't discussed these options with you.

Lomotil decreases the motion of muscles in the intestines (motility) and it takes more time to move the stool through which then gives the small intestine more time to absorb liquids before it reaches the ilium. (Note: For me, I react to the atropine with very very mild constant tremors...when I have my teeth very close to each other, they chatter.)

Imodium also decreases the motility of the intestine so that more liquid is absorbed. There are also less side-effects and prescribed more often, particularly for people with ileostomies, J pouches or Kock/BCIR Pouches

However, with any medications, there can be allergic reactions, interactions with other drugs and/or side effects so you should always talk to your doctor first before taking any medication.

My Emergency Backup (pun intended) I discovered, by accident, many years ago that pseudoephedrine will reduce my BM's per day. If I'm having a day where I seem to be visiting the bathroom far more frequently than normal for no apparent reason, I'll take a 'flu' tablet containing pseudoephedrine. This, for me, works miracles.  I'll even utilise it if I know I'll be somewhere that doesn't have easy bathroom access and I'll be there all day. I theorise that the medication also effects the mucus output of the bowel. So anything that's going to effect the  mucus creating ability of the sinuses, will have a result elsewhere. You must understand the warnings of rebound effect though. ie when the medication finally wears off, you could have the problem return twice as bad. In 20+ years this rebound effect has only happened to me once but I was finally home when that happened and able to cope. Again, with all medications, especially over the counter ones, do your homework and check out interactions. I am also very careful to try and get this medication as a single ingredient. Some flu medications have other drugs in them such as aspirin or paracetamol and if you don't need them, don't take them.

I also subscribe to www.drugs.com and list ALL the medications I take....it's basically your diary and there are very compelling reasons to get into the habit of recording your information on a site like this. I get emails when ever there is any new information published regarding any of the medications I take. When you have your account up-to-date, you will see all information related to that medication on your personal page. All the generic/commercial/brand names, all information regarding the medication and all possible interactions with other drugs etc etc. Never trust your doctor to know everything, they are only human and, in the case of a GP, you may be their first and /or only patient with your condition. Be your own 'expert'...knowledge is power ........ you then know what questions to ask and you can recognise specifics in your symptoms when there are problems.

https://www.drugs.com/cdi/atropine-diphenoxylate.html

https://www.drugs.com/cdi/loperamide.html

I can not emphasise enough that you do your own research and this forum is amazing with the wealth of experience in its members. You'll get the pros and cons and you'll get information from people who have been through what you're currently going through. Doctors are specialists but 'coalface' advice has the value of diamonds.

Of course, as with any advice, you check,  do additional research, seek professional, expert advice and then YOU choose what suits YOU and YOUR needs.

Enough keyboard bashing for the day, my animals are screaming for dinner. So, do some homework and please come back with any questions you may have.

cheers Liz

Just wanted to update everyone that today I was diagnosed with a j-pouch prolapse. So I will be meeting with a surgeon next week about what he wants to do. The prolapse is caused from straining while having a BM and they believe I strain because of a stricture on my pouch opening so even though my stool is pretty loose the opening is still too small to allow it to pass, hence the pushing. Maybe these symptoms could have been forshadowing this, I have no clue. 

I'm glad you got this properly diagnosed so it can be fixed. Sometimes that's the hardest part.

I just had a doctor tell me that straining "wouldn't hurt the pouch" and I thought that might be wrong. Reading about your prolapse confirmed that. Amazing that it's not standard to tell people to be very careful about straining and if you feel like you can't help it, then there could be something going on.

About the melamine enemas -- Are you allergic to sulfa? There's a sulfite ingredient in them. There's a special version (sulfite free) called SF Rowasa that those of us who are allergic to sulfa can use. But you have to ask for it because some less experienced doctors don't know about it.

Hang in! 

Thanks Sunflower70! And yes I am allergic to the sulfa, because I'm also allergic to sulfasalamine, which I took prior to my collectomy while still battling UC. I will definitely have to mention this to my GI. 

I would imagine that a little light straining is ok yes? but I know full on turning red in the face pushing cant be good.

I had my pouch redone about 1.5 years ago by the great Dr Remzi who used to be at Cleveland Clinic. He also did a mucousectomy which is pretty standard with a redo. I have had very minor leakage as well even when I had the ileostomy. I was told it is somewhat common with a redo. Its not horrible and I do used a small square of toilet paper up against the hole, sometimes there is a small spot of stool and sometimes not but I keep it there just in case. I had a scope 4 months after takedown for other issues and Dr Shen who is my GI there stated I hav a very mild prolapse inside the pouch. It does not cause me any issues as far as emptying so he and Remzi stated it was a non issue. Part of my leakage is probably causes from my diet I am just too stubborn to change it. I am hoping it never gets worse but I do worry about when I get older it will be harder to control it. I am 46 now. but my sphincter function is normal as per the manometry test they did right before takedown. Leakage could be minor nerve damage from the surgery itself.  I think I would go back to ileostomy if it ever got to a point of having leakage so bad I had to wear a diaper.

So today I seen a surgeon who works at the hospital I had my surgeries at 6 years ago. He said that he believes it could either be a prolapse or it could be many different things, however, since it's a children's hospital I have to go see an adult colon and rectal surgeon which I do understand it's just hard to find someone with experience with j-pouches. So I guess for now I am being treated with a hydrocortisone suppository to help with the inflammation they do suspect in my last section of colon which is connected to my rectum. 

The surgeon also mentioned that a scope will be necessary to actually see what's going on that's why they cannot positively identify what the issue is.