Mike, 

i experience  everything you have described except the hemorrhoids. The anal fissures get so debilitating that the only thing that helps is cipro. I just don't understand the whole cycle myself  I have tried every cream both prescription and non for the fissures and nothing works but cipro. They are still there, but I can manage as I'm not in debilitating ER type pain 

i have tried anucort, cortifoam, Canasa, retiv cream, nifedipine ( both for fissures) and lidocaine  numbing cream.... all w little to no effect   I have even tried coconut and olive oil  

I wish I had answers for you  I'm told I have scar tissue at anastomoses connection    I'm convinced mine is from repeat cuffitis and not a surgical, mechanical  issue as I have been told   My option at this time is a strictureplasty to cut away scar tissue, probably shorten the cuff and advance the pouch   Have they discussed this option with you?

 I too never had any of these debitatung  anal issues w my UC   Some of this can be from repeat diarrhea and reduced blood flow to anal canal from the sphincter muscles tending from the stricture as well   

Ivechad the J pouch a little under three years now and I'm undergoing the same exact issue as you. I went to the hospital for a week insisting there must be something causing this 10/10 pain on bowel movements for which I stopped eating or only stuck to liquids. I even got backed up because I couldn't go to the bathroom without subsequently writhing on the floor or in the tub.  They owed it to the severe cuffitis I apparently have. They are questioning whether I have crohns due to possible recurrence of my previous fistula.  We are waiting on approval for a new biologic, Stelara. This is the first time I've been diagnosed with cuffitis even though I've had fissures in the past and pouchoscopy otherwise normal.

In the meantime I started cipro and flsgyl and am using low dose oxy to slow everything and offer some pain relief even though the pain has mostly subsided in the past two weeks if I'm careful.

The part I don't understand is that the pain is/was fully localized to the exact area where the fissure and hemorrhoid are located and only occur during BMs. I hope the stelara somehow prevents this process from recurring.  

Jmoons. 

Pmease report back w new meds.  I too mainly have pain w bowel movements and sometimes for a bit after. I'm just questioning this pouch advancement recommendation if I'm truly dealing w disease that keeps creating the stricture and fissures. 

I will. Might be a couple le months. 

Good luck. Was the fistula from the fissures?  

No the fistula was immediate following my J pouch formation and took 13 months of drains to close. 

Mike, I don't know how you've treated the fissures, and I'm not sure why you're asking for a home remedy. Perhaps you've tried this, but one approach would be to *aggressively* treat the fissures at the very first sign of trouble. Over time you can figure out if nitroglycerin, nifedipine, or diltiazem work for you, along with sitz baths. If all three meds failed then you'd have to take a different approach.

Scott, 

The above are all good suggestions for Mike if he has not tried. I've tried all but diltazem and the only thing that works to calm my fissures is cipro. It's very odd. I cannot tolerate the headaches and rapid heartbratcw tectiv. Nifedipine does relax the anal canal to help pass stool when fissures are roaring, but it never heals them for me.  It's very frustrating.  

Is there a difference between a sitz bath and soaking in a bathtub?

Hello, Mikejc. 

Try a sitz bath to relieve your pain. Sitting in very warm water (or as hot as your bottom can tolerate) will bring blood flow to that area and that will help heal the fissure cuts and raw areas. It is very soothing. Sitz bath basins are available at health equipment stores, or through Amazon. They should be less than $20. Worth every penny because it will soothe your pain and it is less work than filling a bathtub and sitting in it. A bathtub is so big the water cools quickly. The little sitz bath basin fits right over the toilet bowl (it is shaped exactly like the toilet!) and you fill it with hot water and lower yourself onto it. Any overflow water will flow out through the small opening in the back and into the toilet. No water on the floor! I used mine to heal my fissures and external cuts and general Pain during the first months after takedown. Just use plain warm water, no salts or oils. Now I never need to use it.

Eat high protein food. Wounds need protein to heal. After surgery I was told to eat high protein foods, and I believe I did heal faster. My first meal at home after takedown was steamed fish on rice, with a poached egg on top, and salt. Heaven. If you have smoothies because you want to give your insides a break, make sure there is plenty of protein in your smoothie. Add plain Greek yoghurt. Plain flavour, not the sugary stuff. Check the label. Or add half an avocado for protein and good fat. Silken tofu is protein and good for smoothies. Add Ceylon cinnamon, or a drop of pure vanilla extract for natural sweetness. Try to get your protein from whole food, not a protein powder. Eat eggs or tofu. Steamed fish. Broiled chicken. Canned salmon or tuna. All soft, easy foods that will be good and kind to your sore pouch area. You can cook vegetables in canned stock until soft (poke through with a fork) and pour the cooled veg and broth into a blender and purée, or use a stick blender and purée so you can get some vitamins and minerals through this smooth soup. A spoonful of Greek yoghurt on top, drizzle of olive oil, and you have a nourishing lunch, or dinner if you want to add sourdough bread or broiled chicken.

A barrier cream that helped me is Zincofax, the brand used on babies. Sometimes taking it back to the simplest thing can work. My home care nurse who helped me when I had an ostomy bag taught me to keep it simple, especially when I thought that using a skin wipe, powder, and spray at the same time on my poor bleeding stoma was helping. It wasn't. We stripped it back to one skin protector and applied the wafer. It worked. I think it can also work with other difficulties. Keep it simple, let your body try to heal while you help it by taking in protein, vitamins, and good nourishment. It is very hard, I know. I wish you good luck.

Hi all, thanks for getting back to me with some great feedback and I hope this is of benefit to all as the feedback is great. I know these three things fissures, strictures and hemorrhoids are so common amongst pouchitis / cuffitis sufferers and I expect that we have to deal with these things on a regular basis. Its amazing how something so 'small' can be so disruptive to our daily lives so management is key but it would be great for me to be able to execute an 'autopilot' approach to managing these things as I literally have to stop what I am doing sometimes (even when working / meetings) and completely focus on management of the pain / symptoms / route cause in order top resolve the problem and then maintain this discipline for up to 1-2 weeks to get ahead of the symptoms and return to normality. I haven't yet reached the ninja-like discipline with managing these things because as we all know there are many individual activities which trigger a flare up and these can be situational. I have had some success in intense journal /Tracking symptoms allbeit very time-consuming it has shown me some 'trends' to improve symptoms rapidly:

1.) Sitz baths twice a day (morning and before bed) absolutely helps all three of these issues but can be time consuming and impractical (evening is better to help you relax before bed)

2.) Not eating late and last fluids by about 8.30pm. I have noticed something with this as well as easing night toilet visits it reduces the possibility of overnight pouch is full and can increase cuffitis and perianal issues. I do find that one of the keys to managing better is developing a diet which allows for minimal sleep disruption. I always feel better with uninterrupted sleep (this is a very rare event for me as usually I am up at least once a night). This helps in general but I have noticed a correlation with speeding up fissure, stricture and hemorrhoid healing. Any tips in times of day eating food? Pyramid diet structure? Or foods to avoid after a certain time in the day?

3.) I do use nitroglycerin based but when you have all three issues occuring simultaneously (Sounds terrible !) or 2 out of 3 issues (e.g. Hemorrhoids and Fissures) then you may need multiple creams (one for pain and one for healing) and its literally gets messy and im sure does not help the skin health also. Its the pain from the fissure or hemorrhoid which creates an anal stenosis scenario and a tight sphincter muscle so this is the nasty thing to try and avoid in a bad spiral. Witch Hazel, Aloe Vera and HorseChestnut are all supposed to help with hemorrhoids if you have poor circulation (e.g. if you suffer from Varicose Veins as well) so has anyone gone down the system natural remedy path for improving general circulation (as well as hot bathing) ?

4.) Getting out of the habit of straining - This can be very hard if you have time pressures (e.g. toilet break in a meeting is a classic) or you are trying to minimise bowel frequency due to perianal soreness or its the middle of the night and you need sleep. I usually have preferred positions to speed up evacuation but in some cases if done to quickly can re-open fissures and re-create weakened hemorrhoids. This is a nightmare quite frankly, just when you are getting on top of things a fissure or hemorrhoid recurrs and you then know it will add an extra few days to a week + to recover in one short toilet vist. Any tips here? I know we are getting a little personal but does anyone use the 'elevate the legs' on a child stool or leaning forward or leaning back ? I think with cuffitis and scar tissue, because inflammation changes the dynamics of the bowel motions its difficult to remember what worked and what didn't work sometimes, especially when you are in the heat of the moment and in pain ! Any advice here?! (Extreme time management or rather food management (i.e. liquid diets on busy days etc?)

As ever, your feedback is much appreciated and valued.

Best

Mike

One small trick for avoiding bathroom trips at night is a small, fatty meal at bedtime, like a spoonful of peanut butter, preferably without added sugar. It doesn't work for everyone, but some report excellent results. 

I know the feeling of "needing" to get finished in the bathroom quickly, so a useful discipline if you're in this cycle is to simply treat straining as absolutely unacceptable. It can be hard to remember when people are waiting for you, or noticing your absence, but it really is more important than the impatience of others.

Can someone please tell me what pouchitis feels like. What I have feels like pure raw nerves. I can't wipe and hardly anything helps. 

Pouchitis commonly feels like urgency, greater frequency, nighttime (or even daytime) leakage and accidents, and perhaps some cramping. Anal pain isn't usually a sign of pouchitis, though increased frequency and leakage can contribute to anal pain.

Hi, DBailey. 

Wiping hurts, and not getting the area absolutely clean leads to more raw skin. It's a vicious cycle with toilet paper. Have you got a plastic bidet bottle?  Use that after every BM, then use toilet paper to gently pat dry. This will keep the area clean and free of stool which toilet paper alone just cannot do (and toilet paper is like sandpaper when you're hurting). These plastic bidet squeeze bottles are least expensive on Amazon. I've seen some in specialty health equipment stores for twice the cost. 

thank you so much.  

I have a mild case of pouchitis right now just from eating too many pickles and cole saw! Sometimes I crave salt and acid so bad I could eat a jar of the little devils! My bottom is on fire this morning but the triple cream and the preparation h medicated wipes help a lot so hopeful a diet of mild boring food for a couple of days will settle it back down 

To answer D Bailey pouchitis makes me nauseous cramps slight fever just sick all over and it feels like my pouch is going to fall out ��

It feels to me like someone sliced my insides with a razor, shoved a golf ball up my anus coated in hot sauce!  I know this probabaly sounds crude but it's the only way I know to describe my pain. I have been to the ER and another Dr visit this week and no relief. I have taken cipro and flagyl already now for three days with very little relief.  I have used lidocaine cream. I don't know what else to do but stop eating of which my doctor told me I need to eat. I guess I don't understand why it feels like raw nerves when I wipe. My whole body trembles when I touch the area. Pain meds do not work. I can't stay in the tub 24/7. I need some relief!!!!!

I usually take hydrocodone and just go to bed when it gets so bad for a few days hope u feel better soon 

Thank you. Hydrocodone is like eating candy to me. I guess I've had so many surgeries and such it just doesn't work 

Hi all, I do liquid only days sometimes when things get really bad. You know when you are recovering in hospital from some kind of surgery they start with nil by mouth and drip to let things settle down. Obviously we cannot do that and go on a drip but if you can do it move to clear liquids first, then solid liquids then low residue, low volume for a week or so (and bland of course!) avoiding sugar, fat and dairy ( and wheat if you want to go really extreme). Effectively your on a low fiber paleo diet which actually is supposed to be healthy for people with out IBD. (Basically its like SCD but with more vegetable and fruit based Carbs). Bloody tough if your not used to it but needs must if your in trouble ! I have never managed to control cravings myself and I think thats half the battle to be honest. I binge eat as well stuff I shouldn't because psychologically you know you are being constrained from it. This is the trick. If your a big foodie, then of course IBD seems like punishment or something...but if you can think that YOU have the control by controlling what goes in. (I know, like hundreds of people and medical professionals, dieticians have told you the same), but in desperate times I know I can always control my diet. So I move to liquids sometimes weekly ( 1-2 days a week) to detox or 'empty' and I do feel better fast (in 1 day actually). This also allows for pouch, rectal and anal healing through reduced bowel frequency. I actually find this easier to do when I am working as I am more focused on work rather than snacking and my occupied mind then takes me away from cravings. I suffer from cravings more at weekends when there is less of a busy schedule to stop you from raiding the cupboards for snacks you shouldn't eat. But then I can relax the diet a little on Saturdays knowing if I get a reaction I have Sunday to recover. Simple method. The one issue I had with this was I had my gallbladder removed in 2013 due to build up of gallstones as my terminal ileum was removed in my total colectomy and J-Pouch in 2002/3. So basically 10 years of poor fats absorption can cause the gallstones. So now if I have a very fatty meal or dont eat much, sometimes whats left of my gallbladder (not much) and my Liver doesn't like it and it over produces bile which isn't pleasant on top of all the other little bits we have to deal with ! Take care all, Remember that you control diet, exercise, sleep, rest (to a certain extent) so these are the 'tools' to get things under control in the short term if you can. 

Best 

Mike

Loved your post Mike! I am currently having a devil of a time with pouchitis right now it is hard to do just liquids but I'm going to try for the next couple of days losing weight is starting to become an issue . How do you keep weight on? The thought of having to go to the bathroom right now gives me chills I refuse to get on antibiotics and just going to tough it out last time I had this it lasted a week hopeful this is short lived would welcome any suggestions from anyone on how you cope

Carey,

Try adding fiber and or powdered flax seed (I know this can increase output, but it thickens mine). When I get in agaonizing pain, I will do alot of smoothies with almond milk, blueberries (my pouch loves them), mixed raw greens, bananas, kiwis. strawberries or any other kind of fruit. I add ptotien powder and keratin to my smoothies and sometimes chia seeds, as well as my VSL3 DS.

I often drink the juice of cooked vegetables (my grandmother always said that is where most the vitamins are) when I cannot tolerate cooked greens or heavy meals due to too much gas and pouch output (think stinging back end) and I am a vitamin junkie. 

I agree that if you really slow down your food input for a few days, it really can give the pouch time to recover. I have found over time, small meals work best. Any time I overeat, I pay the price with pouch issues. I also despise being on antibiotics and have to really be suffering to resort to them.

Thanks so much good advise !

Hi Carey, My view on antibiotics is this. If you need to take them to get you out of a slump. Take them. Again you can control the dosage. Lower dosage daily over a longer period is better than high dosage for short periods and then off them quickly as you can get a reaction to this. Easing off medication is always better as the concentration of the medicine in the blood can balance gently back with a priobiotic, gentle exercise and gradually more varied diet. In a major flare up if I am completely dysfunctional in my daily duties and glued to the toilet then I'll take a slightly higher dosage initially to get me more functional quickly. I think that question people ask themselves about long term medication is individual, do I suffer now for maybe a longer life ( assuming the worst that medication shortens life by an unknown amount e.g. 5 yrs. I think the answer changes depending on how long you've been on medication and maybe your life stage. Tricky one but if I'm trying to be functional and it's affecting me put food on the table right now. I'll live for today and take the medication now but it needs to work for you and with minimal bad side effects. CIPRO is not to bad for me at low dosages. Great advice from Jeane on diet tips!

Stay healthy, 

Mike

Going on day 4 of pouchitis misery feel bad all over I'm staying on a liquid diet the best I can trying not to feel sorry for myself and not take pain meds or antibiotics I don't even have a gastro doctor any longer hmmm what to do ? Stick it out like always I suppose 

 CArey, 

Don't suffer take the antibiotics. Within a couple days you should feel better. You prob need a good gastro to help manage your symptoms. Sorry you are not feeling well. 

Yes, Agree with Jeane. Take antibiotics Carey and don't suffer! I respond well to CIPRO. Some do to FLAGYL. And some take both for the maximum impact as these two actually tackle AEROBIC and NON-AEROBIC Bacteria differently. ( Please consult you're Gastroenterologist for this)  Ease off the dairy aswell and any trigger foods for you for faster results. If you are stuck in a bad spiral as well, consider taking a course monthly (e.g)  1 week a month for 3 months so there's some support built in for each month for 3 months. Sometimes I find this strategy gets me out of cyclical pouchitis attacks if I've become a little antibiotic dependent which is possible sometimes depending on lifestyle, stress levels, diet etc. 3 months also gives you time to try out a new diet plan and learn what works over a longer period as pouchitis symptoms may also  change a lot between attacks

Ok thanks all I will find a gastro and make an appt I didn't always have this much trouble and pain (I have had my pouch for 20 yrs ) maybe because I'm getting older and things just don't work as well as they used to sadly enough.