Surely just let me die

@De posted:

Dear Lee-Squire, I've held off writing but now feel compelled.  You may have this burning for a month or so more so you must find something to help relieve the pain.  IT WILL GET BETTER, I swear/promise.  I am on my pouch for 16 years now.

1.  You MUST get a bidet or hand held shower to use immediately after going.  It will make the greatest difference in your pain and your outlook.  Until the small intestines start working like a colon, the stomach bile burns like the dickens !!  I was often in the shower every time I went during the night, 1am, 2am, 3am etc.

2.  Get a sitz bath at a pharmacy at about $10.  I never used the water attachment but sat in it with very warm water after going and every couple hours for pain.  It helps with cleaning the area and for hemorrhoids, a fissure, or just raw skin.   Until my recent (3 months) bidet purchase, I had a squirt bottle at the toilet and also wet the toilet paper to wipe. Amazon carries a great and reasonable bidet you can install.

3. BRAT diet helps, bananas, rice, apples/applesauce, and tea.  Peppermint tea to calm the stomach acid and chamomile tea to help you sleep (double work).  I had to reduce sugar but it made the burn worse and this includes soda/pop.  Bagels, crackers, even pretzels make a big difference.

4.  Put paper & pencil near toliet for you to keep track of BMs and what you ate.  I dated the entry, line 1 was the time of BMs, line 2 breakfast food, line3 lunch, line 4 dinner, 5 snacks.  After a couple of weeks patterns may be obvious.  I became lactose intolerant and I used to have milk with every meal.  I cannot tolerate paprika any more.  I can't eat my loved Doritos.  You will find your weaknesses and they will make you stronger.

5. Probiotics help.  When I start to have a flare up, I take 2 instead of 1 per day.

6.  Calmoseptine cream was a life saver for me.  I get the probiotic and cream at Costco (cheapest).  The probiotic is on the shelves, the cream at the pharmacy window.

7. DONT GIVE UP.  We have all been there, no lie.  IT WILL GET BETTER and you will love life again.  But remember,  no matter how great your doctor, support of whatever.... You must and will learn how your body reacts to foods, stress,etc.  Just carefully pay attention and the pain will become less the sooner you learn.

My very best wishes, and prayers for you and your family.  Sorry this was so long.

Dee

stay away from Probiotics. they only are intended to work in the large intestine, not the small intestine which is our pouch. Probiotics can lead to SIBO, and you dont want that. This information was told to me by Dr Shen. Green Tea extract is what he suggests

@Pouchomarx posted:

stay away from Probiotics. they only are intended to work in the large intestine, not the small intestine which is our pouch. Probiotics can lead to SIBO, and you dont want that. This information was told to me by Dr Shen. Green Tea extract is what he suggests

What about green tea instead of the extract?  And if it's the extract, why?  I drink matcha every morning.  Does that count?

Sorry Sara Marie you and your doctor are wrong.  Probiotics, yes work in the large intestines but your pouch is now your large intestine.  I am living proof of the difference I stopped taking probiotics for a couple years and was getting pouchitis frequently.  My doctor (the third one to say so) told me to start taking them again and it made all the difference.  Your gut whether a large intestine or pouch needs bacteria to process the food through and break down the undigested starches, fibers, and sugars to usable energy for the body.

Unfortunately every doctor was not at the head of their class.  So you may want to check further.

The pouch is a rather small reservoir for holding stool, and it can never in any way compensate for a colon. It is your small intestine that assimilates to extracting more water from your stool over the years.

Probiotics help some people while others have strong resentments against them. It may depend on the kind of probiotics you are taking and the condition of your intestines. In the end there is only a small percentage of the bacteria living in the small intestine compared to the colon, and due to a different pH value and other circumstances it will probably be a different milieu.

I take probiotics myself every day, at a normal dosage only recommended for common supplements. If I wouldn't feel it is any good for me I would leave them. Those probiotics, even if it's more than 20 different bacteria stems, could never replace the diversity and function of a large intestine's microbioma. Where there are bacteria with antiinflammatory and pro-mucosal effects, not only a collection of mostly lacto- and bifido-bacilli, aerobic bacteria that are regarded to be useful and harmless.

It is difficult to say what probiotics do for us j-pouchers. Perhaps one effect is to block harmful bacteria's overgrowth at the end of the small intestine and in the pouch, where there is little movement of the stool and good conditions for bacterial reproduction.

@De posted:

Sorry Sara Marie you and your doctor are wrong.  Probiotics, yes work in the large intestines but your pouch is now your large intestine.  I am living proof of the difference I stopped taking probiotics for a couple years and was getting pouchitis frequently.  My doctor (the third one to say so) told me to start taking them again and it made all the difference.  Your gut whether a large intestine or pouch needs bacteria to process the food through and break down the undigested starches, fibers, and sugars to usable energy for the body.

Unfortunately every doctor was not at the head of their class.  So you may want to check further.

Oops, that wasn't me that posted about the probiotics.  I was asking about Green Tea Extract!  Your statement is challenging the views of Dr. Shen as communicated by @Pouchomarx.  Just wanted to tag the correct person so they might continue the debate if they wanted to.

Poucho is correct that Dr. Shen holds the view that probiotics is useless to treat pouchitis. I was treated by Dr. Oikonnomou, a Shen protege who studied under Shen when both were at Cleveland Clinic. Dr. O was at Yale 2009 to 2015 and treated me during that period and actually frequently discussed my case with Shen. He told me that probiotics were "an expensive placebo" and fecal implants were nothing but a "wildly expensive probiotic." The views they hold are probably true for most Pouch patients, but we have had reports from some posters like Scott F and Dee that probiotics worked for them. My own experience with VSL#3 when I cold turkeyed off antibiotics onto VSL#3 was that it was an unmitigated disaster, and resulted in brutal and savage pouchitis causing me to sink to depths of struggle that were very harsh low points in my 30 year battle against pouchitis.

My suggestion to the OP would be to try it- but don't place high expectations on it working alone and not in tandem with other treatments. In your current situation you do not want to waste too much time with treatments that do not work.

@CTBarrister posted:

Poucho is correct that Dr. Shen holds the view that probiotics is useless to treat pouchitis. I was treated by Dr. Oikonnomou, a Shen protege who studied under Shen when both were at Cleveland Clinic. Dr. O was at Yale 2009 to 2015 and treated me during that period and actually frequently discussed my case with Shen. He told me that probiotics were "an expensive placebo" and fecal implants were nothing but a "wildly expensive probiotic." The views they hold are probably true for most Pouch patients, but we have had reports from some posters like Scott F and Dee that probiotics worked for them. My own experience with VSL#3 when I cold turkeyed off antibiotics onto VSL#3 was that it was an unmitigated disaster, and resulted in brutal and savage pouchitis causing me to sink to depths of struggle that were very harsh low points in my 30 year battle against pouchitis.

My suggestion to the OP would be to try it- but don't place high expectations on it working alone and not in tandem with other treatments. In your current situation you do not want to waste too much time with treatments that do not work.

Question I asked the other person who has seen Dr. Shen or a protege: what's the deal with green tea extract?  Is there something special about it, or would regular use of green tea suffice for these things?  I get irritations and inflammation, but never full-blown pouchitis (knock wood) yet, and I have a matcha habit.  Could be a coincidence, but I'm curious.

Green tea extract was never mentioned to me by Dr. Oikonomou, the Shen protege. He and Shen wanted me on biologics a few years before I was actually on them. Dr. O had been mentioning them to me, specifically Remicade, probably starting in 2011 and 2012. I never went on Remicade while he was still treating me. I was resistant to it, initially. Dr. O moved to Mount Sinai in NYC in 2015 (and he is now in Chicago which is where he originally came from), and my care was then taken over by Dr. Brand, who immediately recommended I go on Remicade to supplement the antibiotics. I was all set to do that when, in the first part of 2015, I was diagnosed with Stage 3 thyroid cancer. Dr. Brand then told me NO REMICADE until the cancer treatment completed. Because I would have surgery and radiation via radioactive iodine, I was not safe to have Remicade until 6 months later. Remicade proved to be a game changer as far as the inflammation in the Pouch, but not so much for my main problem area which is the J Pouch inlet. Which is strictured and was dilated 3 times in late 2021 and early 2022.

I would also like to hear more from Poucho on why Shen is souping up Green Tea extract in lieu of probiotics.

@Lee-squire Be mindful with OTC products on your own, use them under a doctors care. When you google green tea extract, it speaks quite a bit about liver toxicity.
OTC meds can be great but for people with J-pouch’s it can also have dire effects.

I have had my j-pouch since 1985. The thing that works to keep my butt from excruciating burning is Metamucil. I order the smooth sugar free kind on Walgreens website. It has no artificial sweetener or sugar. Its the one with the green band on the bottle. I take 2 heaping teaspoons in 1/2 glass of ice cold bottled water. I get a lot of Sams Club bottled water. Tap water makes me go more often. I add a half spoonful of the orange flavor Metamucil which makes it taste good. Stir it up and drink quickly because it thickens.  I take this before eating and sometimes after, if I eat pizza. I also have a handheld bidet hose attached to my toilet I ordered from Amazon. These 2 things have saved me from a life of impossible pain and helped me get my life back. I hope it helps you!

Hey @Lee-squire, hope your quality of life is improving from the amount of advice and support I’ve seen being posted.

I just wanted to say I’m an 18 year old lad, just got my J-Pouch last Friday and you and everyone in this forum have been a lot of help in finding a place of self-belonging and loads of advice as I’ve been going through the start of my journey.

As someone who had Ulcerative Colitis diagnosed to me at 15, and multiple medications taking a toll on me mentally and physically. Countless times I’ve felt I’ve been alone, helpless and given the toughest life out there. I can empathise for your mentality around your health, I myself have had what I like to call the ‘ring of fire’ with my ass just burning and being red raw from this first week of my J-Pouch, thinking “I’d rather have UC than this.” But I’ve implemented a few strategies that I think might help you with the trips to the toilet and your pain that I’ve found quite useful so far and it’s reduce my pain.

-Toilet Paper is the worse thing to wipe with, so rough, dry, adds fuel to the fire. I recommend some Kleenex Flushable Wipes, Fragrance Free. Don’t necessarily wipe either, lightly tap around ur anus, cleans up any leftovers, it’s flushable, and doesn’t harm the skin.

-For the alkaline acids that come out every bowel movement (correct me if I’m wrong) I put barrier cream around my anus with my finger after each trip to the toilet or even when I want to apply some protection. Keeps the skin from getting damaged and might help you recover a bit.  It’s from a company called Cavilon, I’m from Australia so I’m unsure if you would have it accessible to you at the moment but I’m sure the knowledgeable J-Pouch experts could possibly suggest an alternative in the U.S or Canada?

I hope my new experience like you can hopefully get better and we can reap the rewards that other people on this forum all speak about. My family is also English, we are from Manchester, the blue side , and a saying me and my mum who’s helped me through as a nurse with my bowel disease and surgery’s is. Shit happens, and for us that’s quite literally. I’ve always been a very outgoing and happy kid myself and I have my downs, but I’ve also had my ups. Sadly I’ve missed out on opportunities in life, academically and athletically due to my health. For you Americans I am a 6’7 18 year old kid who pre-colitis and even during my colitis had offers for basketball over in the U.S, but with Covid and an auto-immune disease, there was no way I was going to go over. For me that was my dream, I will still achieve success in this regard, it’s why I’m here with a J-Pouch now, I put on 12.3 kgs in roughly 5 and 1/2 weeks whilst I had my Stoma bag awaiting my reversal surgery. Who knows if I’ll chase that dream still, and I know it’s quite irrelevant to giving you help, but I hope some context and some familiar feelings can help you find some more resilience and strength to keep pushing through. For the both of us.

One last thing about your weight and diet, to help put on weight I’ve drank resource ultra ‘high protein’ from Nestle, and Fresubin calorie drinks. Both having 300 and 400 calories respectively, I would take 1 Resource Ultra, and 2 Fresubin daily to help rebuild as it seems your diet is not good quite like how mine was. It can be a bit of a pricey purchase over in Australia, but I’ve had some gifted to me by the hospital and I’ve also been able to purchase some. I would also hope maybe my American or Canadian experts will be able to offer some alternatives or help on those regards for it’s it good or not for your J-Pouch and health. Everywhere and everyone is different and I’ve not seen any problems myself.

Thank you all, and urself @Lee-squire for being very open and knowledgeable on your experience, it’s helped myself a lot and given me a lot of promise for the future.

I myself would like to ask a question to anyone who wouldn’t mind helping out, obviously as a teenager my social life and consciousness of my bowel movements is of very big concern. I was wondering how long it took for you to see any change in the amount of trips to the toilet you would take?

@Finlay Reid Seeings as your in Australia have you watched this guys videos? Super helpful, I reached out to him myself. https://www.youtube.com/channe...NSgb_PPGfqhhfQU8HaqQ

@Sean Jenkins posted:

@Finlay Reid Seeings as your in Australia have you watched this guys videos? Super helpful, I reached out to him myself. https://www.youtube.com/channe...NSgb_PPGfqhhfQU8HaqQ

I like his video of how to relieve gas, particularly when in public.  Boom!  Now I have to go listen to Missy Elliott's "Work It" (because her ass goes boom, too).

Just one comment on those "flushable" wipes. In the USA they are described as being flushable. They will go down just fine but then they can create horrid blockages on the way through home sewer systems. They are also despised by workers in sewage treatment plants. Baby wipes included. Much safer to place them in a plastic bag and toss in the garbage. -- Rose --

@roseviolet thank you I’ll keep that in mind for disposing the wipes.

@Sean Jenkins I’ve just watched his videos now, they seem very helpful. Thank you for that.

@Sara Marie I can’t really find the video on where he talks about relieving gas? Do you know what the title of it might be? Thank you

@Lee-squire please keep us posted on how your feeling from time to time. I hope you start feeling better soon.

@Finlay Reid Oh no, I just started watching them and happened upon that one.  Let me see if it's in my history....yes, here it is:

https://www.youtube.com/watch?...W8vIazqk&t=1654s

He is quite talkative and I'm glad this works for him. This works for me some of the time.  Sometimes I have to start with some sort of inversion such as head/hand/forearm stand. A forward bend or downward facing dog can also work.  I have found that when the gas releases while I'm lying down, it comes out easiest when I'm lying on my right side, just like when I had a colon, and just like our little hippie brother models.  My most reliable method for release is the manual pouch massage while sitting on the toilet: unless my pouch is super inflamed, this empties it of all liquids, gasses, and solids.

@Lee-squire since you're having a difficult time finding a good g.i doctor that actually has time to take on a new patient, the best thing to do is go to the ER and tell them about your pain, and especially the bleeding.  That is the best way to get admitted and they will assign you a g.i doctor right away. Once you are discharged from the hospital you will get a follow up appointment with that specialist right away.

OMG so glad your feeling better. Hang in there. I’m from Canada Ontario and I’m pretty sure you will qualify for disability insurance from the government. There are forms online and you’ll need your doctor to help you. I only found this out way too late. No one tells you anything.

Hi Lee-squire,

I am late to the party here, but I’m wishing you all the best. As others have said, we’ve all been there. I’ve lost my career (for which I spent ten years in training after college) to this mess. I’ve had bad care, no care, you name it. But I seem to be on the other side now, down but not out.

Cuffitis is brutal. I had it for a few years—and no diagnosis until someone finally did yet another rectal exam that made me cry, and shoved a script for suppositories at me. I could NEVER get them in. So I dealt with the misery, ate all of five bland foods for a long time (and took a bunch of OTC vitamins to hope I wasn’t ruining my health further), and then finally found someone to fix the problem.

The last bit is the hardest one. I spent way too long on things that didn’t help, at the insistence of docs who didn’t listen, just pushed their way. I was willing to do whatever they thought would help, but when it wasn’t helping, they weren’t willing to shift tracks. That was a problem with my care, one I recognize a lot faster now—and no longer put up with.

That brings me to the most important point—we all will have a ton of suggestions/ideas for how to get you past the hump. But every single person with this seems to have different diets that work for them, different experiences, different things that help/hurt. And that goes for probiotics, vitamins, extracts, foods, you name it. NONE OF US IS 100% RIGHT FOR EVERYONE, when it comes to these issues! And no doctor will be either, not even the famous Dr. Shen.

The principles of what work are similar in some ways, though—so we can suggest things, but if you don’t find they help, please don’t give up. Something will—just have to find it. I got zero help from the three nutrition consults I had requested in different hospitals. (They googled what to do—it wasn’t useful.) There really is no single manual or guide to this. Intestinal tracts are very individual, just like their bacterial composition. Length and bacterial composition matter, but there’s so much more we don’t understand.

My probiotics helped a ton, Dr. Shen’s opinion notwithstanding. VSL#3 did not—and was ridiculously expensive. But an OTC one, the gummy Digestive Advantage, made a world of difference in my case. Go figure. I just know it helped me, took 3 or 4 a day when I used to have nonstop pouchitis and cuffitis, and was working full time, 12 hrs a day. The probiotics used to make my stools ‘firmer’, so less frequent/not likely to cause fire-butt, acid leakage, or any other of the miseries. It helped the pouchitis, but not the cuffitis—because my immune system targeted the rectal cuff with laser-focus, like it did my colon when I developed UC. Sometimes meds help that, sometimes they don’t. Mine didn’t.

It was miserable before probiotics, and I had many a day when I bawled my eyes out—and didn’t know about this site, either, so I didn’t have this kind of support at the time. So I kept playing with foods and supplements until I found something that helped me get through. In my case, dairy was a good thing. For others, it’s a no-go. I can’t handle GMO grains, or anything with too much ‘hard’ (insoluble) fiber, but soluble fiber is highly necessary for me to control my stools and not have a zillion runny ones, even taking Imodium/Lomotil and tincture.

My weapons of choice: non-GMO whole grain rolled oats, cooked in various ways, to provide soluble fiber and bulk; cauliflower for soluble fiber; fried rice from a greasy Chinese-American place (no idea why this works, but it stopped my pouchitis cold back in the day); and a protein powder that came with a lot of soluble fiber in it, plus strawberries and milk, for good calories.

Anyway, whatever you find that works for you, please know we’re here for you, and wishing you success. It’s kind of nuts how much better I felt finding this group, no matter how much I figured out for myself. My own experience was that none of the things people suggested, food-wise, worked for me—but I was still so glad they offered what worked for them. What actually helped me the most was knowing I wasn’t alone in my misery, and that it could get better.

I hope you find a good GI doc to look after you; that’s going to make the most difference, I think, in your ability to tackle all these things and make them better. No matter how much I managed on my own, the cuffitis didn’t go away until it was resected at my redo pouch surgery. Then I felt so much better, no more ring of fire—but I had a nerve injury to my internal sphincter, so now the problems are different. Not nearly as much pain, nothing that would stop me now, but a loss of control.

Before that scares you too much, I think that being sick like this for so long has helped me become more resilient in some ways. I don’t recommend it for others in general, would love to have my old life and career back, but since that’s not possible, I’m trying to find out what else I can do to provide for myself/keep from going crazy for the rest of my (hopefully long) life. Once you’re out of the acute misery stage with the problems you’ve been having, maybe you’ll feel better able to look at that side of things; I’m hoping you find something that makes you feel like it’s all bearable. I’m still hunting for my second act. Some days are better than others, and I’ll admit to being profoundly discouraged at times. But I keep going because… no choice, really. And though I’ve never been an optimist, I feel like I still find ways to enjoy life. What helps most, in my case, is not looking back so much anymore. I used to beat myself up constantly for ignoring my instincts and not going out of town for better care, when I first knew I’d need the colectomy. But it doesn’t help now to dwell on my mistakes like that, and I’m learning to do it less.

Best of luck!

Hi there, Athena!  I looked up the Digestive Advantage and found there were several kinds.  One is particularly marked for digestion.  Which did/do you take?  And what does cuffitis feel like?  I often wonder whether my butt discomfort is hemorrhoids, cuffitis, or something else?  It seems I get a variety of butt aches which come and go randomly.  I have 1,000,000 types of butt ointments, creams, pastes, etc., and I just keep trying one after another until something helps.  It's different on any given day.  The worst is when nothing helps!  The best is when the butthole takes a break from being irritated.  What a persnickety butthole!

You make me laugh, Sara Marie!

I use the Digestive Advantage ‘daily probiotic’ for ‘digestive and immune support’ gummy probiotic they sell at Costco. I found it helped to take 3-4 per day, all at once was fine, to stay ‘balanced’. It helped pouchitis, but not cuffitis. Worked a lot better when I had pouchitis with the J-pouch; less good with an S-pouch because of the different mechanics.

Cuffitis is likely to be the problem when it hurts badly to both feel the urge to defecate, and to actually go. With pouchitis, it feels crampy and miserable in your abdomen/pelvis whether you’re on the toilet or not; cuffitis for me was a feeling of internal discomfort right around the anal area that became the ‘ring of fire’ when trying to evacuate. It hurt to sit, bled when I pooped, and was rather like my UC flares felt (minus watery diarrhea), just localized to my derriere. I do wonder if it’s worse because it doesn’t cause watery stools, which makes them easier to pass, frankly…

That’s the other thing. Cuffitis can be mistaken for a stricture, because the rectal cuff is so irritated and swollen that it blocks the normally easy passage of stool from the pouch. The caliber of the stools (if they’re formed) is decreased, and it hurts much worse the harder/firmer the stools are, because it’s so hard to pass them without miserable burning. I couldn’t get suppositories to go up there when I had cuffitis—and that’s what they tell you to use to treat it. (Ugh.) You might need help to get them in, if you have to use those. It would be absolute misery to introduce anything, a finger, an enema nozzle, suppository…

I’ve also had anal fissures from going so much and wiping and the usual suspects. Those hurt like Hades when actually defecating, but otherwise are less noticeable to me. I found that barrier cream helped a ton with those and with diaper rash—the one we haven’t talked about here that much.

All that diarrhea, and the gut imbalance of bacteria, favors excess Candida yeast in the gut and stool. Just like babies, when I have an accident and I can’t get it off my skin fast enough, the acid, bile, and yeast combine to create bright red fiery irritation between the cheeks. There is blistering as well, when that happens. Calmoseptine is my best pal when that happens, just like with the fissures…

Oh, and then there’s the vaginal candidiasis that happens when the runs are bad… not butt pain specifically, but it’s plenty to deal with anyway!

So, yeah, been there with the butt-pains of various sorts! The one that makes you want to jump off the table during the rectal exam is usually cuffitis, at least for me, and that needs help from the professionals. Anal fissures are sharp external pain usually in the most posterior part of the anal ring, feels like a bit of tearing when you evacuate, and can be made better with the Calmo and softer stools/using water or wipes instead of tissue/sitz baths. I think if it’s worse than that, it‘s worth a look for cuffitis!

Thank you Athena for your insight!  I will check into your kind of probiotics.  There may be something to them, who knows?  It never hurts to have extras on hand...

Hey, Lee. You’ve got a lot of friends pulling for you on our site, and they’ve been offering great advice! I  know the following tip won’t impact cuffitis or your other issues, but it might help alleviate a little of your pain. So, in addition to applying ointments, using a bidet, watching your diet, etc., I suggest tucking a little cotton ball into the anus. The cotton ball absorbs moisture (even sweat in that area can feel like a blowtorch.)  I’ve been doing this since 1981 and it helps me. I know this tip is just a drop in the bucket, but drop by drop, you’re going to get better.

Hey a Cotton ball! That’s a great idea! Thx!

I haven’t been on these forums in quite some time untill today. Just wanted to say that these forums are probably what saved me, and I truly thank all of you.

I too could not deal with the aftermath of my surgery, especially the first two months after the third surgery. I honestly remember just crying and crying sitting on the toilet in so much pain it felt like shards of glass combined with acid, and for the first time in my life, I truly did not want to wake up the next day - it was pretty bad.

But with the help from this J-pouch community I got through it. I just wanted to say don’t give up; the preceding posts have a plethora of great information. I can’t really add to it so I’ll simply say there were 4 basic things that saved me - 1) a bidet. 2) Metamucil wafers. 3) Calmoseptine, but more importantly eventually switching over to Ilex, which was the real savior (unfortunately Ilex is now hard to find these days). And 4) believe it or not, Lemon water.

Are you putting lemon in your water every day?  This is supposed to help tonify/detox the liver from what I have heard.  I am curious about your use of it. 

Veggiescott, I’m so thankful that you’re are doing so well! I think the folks that post on this site are some of the kindest and most empathetic people on the planet. Everyone is willing to take the time to offer advice, tips, or just provide some “online ears” to listen. Merry Christmas! Rudy, the Cotton Ball lady! 🤗

Barrier cream and psyllium powder, and Imodium are my every day go to’s.  
I feel normal most days.

Hope you are feeling better now? I’ve had my Jpouch for 28 years. It was rough at first , highs & lows but on an even keel now. Take 8-12 Pepto Bismol tablets per day. Use Preparation H , there’s one with Lidocaine as a barrier & pain relief. Eat white foods, rice, pasta, potatoes, bread, chicken, turkey, tuna, eggs sand an occasional steak & burgers. Some cheeses with Lactate.
Anti anxiety meds help. I have arthritis in my hands so I take *r*ma*ol. It has an effect on your mood also which helps.
Take lots of vitamins including iron to supplement my poor diet.
Life is good for the most part. I’d hate to miss anything, FOMO, so I carry on through the tough times. Being outside away from the noise helps too.
This is a good time to work from home with the internet.
There are some benefits you may be able to receive from the gov.

Happy Holidays!

You need to see a dr immediately. You should NOt be bleeding. You have pouchitis most probably. Your probably anemic and who knows what else. I’m not a Dr just look at my timeline, I’ve been then the mill with this disease.
A bio drug saved my life. You need to find the right dr. Please don’t give up. There are a lot of option now.

I can totally empathise. I've had brilliant health with a j-pouch since 23, and 43 now, so 20 years. Had some troubles on and off, bit of cuffitis here and there, which mainly seemed to be triggered by eating junk processed foods, but would settle naturally in a few days.

Quite recently had some sort of total systemic, intestinal immune breakdown, where everything from top to bottom felt inflamed, sore, bloated, crampy. After treating myself with the usual antibiotics, and not eating for 10 days to give everything a rest, the inflammation seemed to move south, and I was left with cuffitis so bad nothing would pass, water, air, couldn't even get my finger inside the rectal cuff.

Then add in that I seemed to have that passing razor blades, shards of glass feeling from either one hell of a massive ulcer, or a fissure, no joke I was in so much pain and misery I was questioning if I even wanted to carry on with life at all. I'm glad I didn't live in the US and have access to a gun, as it was getting to the point I was 50/50 if I wanted to even live this pain and misery any longer. I was bed bound, and house bound for 9 weeks.

Im not out the woods just yet, but I was desperate enough to think about booking £100 a night hotel so I could sit/lie in unlimited continuous hot water, and simply go to the toilet in the bath water, empty and re-fill, and rinse and repeat for a whole, lovely warm, relaxing night to try and get the cuffitis/fissure to heal. Right now I am on the Prednisone foam, and it has been miraculous.

It's been a real wake up call for me taking things for granted, and stuffing my face with garbage more recently. I genuinely thought I was going to die.

Also after having bleeding anal skin from the 20+ trips to the toilet simply to pass nothing bigger than a teaspoon if that of water/foam, I moved over to flushable, degradable wet wipes, and will never, ever use anything else from now on, they are MIRACULOUS. I only have to look at toilet paper now, even the expensive quilted stuff to cringe and imagine the sand paper feeling on raw, bloodied, itchy skin.

OP we totally understand, I'm glad you have found this community and have somewhere to vent and get support from people who care and have the experience to listen and help.

PS I really want to change my username, but cannot see a way to do it, can anyone advise?

Also I would be VERY careful with VSL#3, I know it works for some people, and that's fine, we are all different, but in the UK its been taken off prescription as the general consensus among the medical council here was that its efficacy was questionable. Out of desperation recently I got a box myself, £50 I think it was, thinking what harm could it do... and it upset me SO badly, I actually thought my small intestine was going to perforate. The pain, the upset, the cramping, I have NEVER had cramping as sharp as that before, not in my small bowel, it was terrifying, and I actually USED to take it before many years ago, and still had some old stuff in the fridge from 2016!

I doubt I will go near it again, this was only 1 sachet a day, and it wrecked me.

@rcrossco_1Thank you for sharing that experience! 

When I was first given suppositories, I had to smooth the end edges because they hurt going in. It was hard not to scream when inserting. Eventually, things improved. It sounds like your pouch issues have lasted a while, so it will take a while to calm them down. My favorite nurse told me that I needed to put my patience hat on and wait it out. That helped me a lot.

It sounds like you are finally getting some appropriate health care. Keep advocating for yourself and know that we all care.

Lee, any updates fella?

Please do check in. If you are in utter misery feel free to have a chat with any of us and a call or something to have a sodding good rant.

I solved the burning issue with a cotton ball!  Following a BM, wipe with a soothing cream and just tuck a cotton ball in your bum. The cotton ball absorbs moisture (even sweat in that area can feel like a blowtorch.) I’ve been doing this since 1981 and have never had any skin problems. Hope it works for y’all.

@Rudy posted:

I solved the burning issue with a cotton ball!  Following a BM, wipe with a soothing cream and just tuck a cotton ball in your bum. The cotton ball absorbs moisture (even sweat in that area can feel like a blowtorch.) I’ve been doing this since 1981 and have never had any skin problems. Hope it works for y’all.

Any recommendations on the soothing cream? 

Sudocrem is amazing. A great barrier, and allows the skin to heal super fast.
It is not the nicest to deal with, but works wonders for broken, raw, and skin that needs healing.

Hopefully, once you get your breakdown healed, any type of barrier cream should work. The ointment has two purposes—-it cools a “hot bum,” AND it helps to ensure that you’re getting every last remaining bit of “blowtorch fluid” off your skin. Then, the cotton ball catches the leakage before it irritates your skin. Let me know if this helps you at all. I’m sending prayers and best wishes!
The Cotton Ball Lady 🤗