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Hi all

does anyone else ever feel like they’re pooping glass? What about battery acid? I go 20-30 times a day and most of the time it feels like I’m getting ripped up as stool exits my pouch.
Been scoped (“mild pouchitis”), done the antibiotics, steroids, etc. this feeling/horrific pain wears on ya. I am looking into a j pouch re-do as I have been dealing with nothing but problems and misery since I got this in 2013.  Nothing gives me relief.

currently sitting on the toilet crying.

Heather

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This sounds like an anal fissure. Sitz baths can help, and there are medications (nifedipine, diltiazem, and nitroglycerin) that can be used. It’s important to reduce your frequency to give the anal canal some rest. What happens if you don’t go to bathroom so often? Accidents? Pain? Have you tried psyllium fiber/Metamucil?

Hi Heather, I know how you feel when you say you are pooping glass. It feel like it is ripping through you as it is coming out. I had my takedown in June of “21” and I average going about 11 to 12 times a day. I sometimes get that glass feeling and burning when I go 15 -18 times a day occasionally. I agree with Scott that if you can reduce your bathroom visits you will get some relief. Easier said than done. I can only imagine how difficult it is for you to go so many times. I hope that you can find some relief soon.

Yes, I have had horrible pooping experiences with the crying as well as the dread of having to go again because of the awful pain.  I have found that organic powdered psyllium husk is really helpful in decreasing frequency.  The mucous-like quality also soothes the tissues of alimentary canal.  It has to be powdered and mixed with water, has to be organic, and can't be mixed with other ingredients; no metamucil for me, though others seem to find it helpful. I can't even have it in convenient capsules.  I have tried multiple forms of psyllium and have come up with this specific bunch of criteria. I eased into taking it, starting with 1 teaspoon with water before meals to slow down the guts.  I didn't want to make my stools bulk up much right away because of the sore butt.  This has not been a quick fix, nor does it fix everything, but it has really increased my quality of life by making my butthole much happier.  Extra added bonus: my guts are more toned and less likely to get kinked up around adhesions created during surgery, which can cause bowel obstructions. Those are the worst!

Thanks so much for your responses. Although I feel horribly that you all have these troubles, I take comfort in knowing I am not alone.
scott and Richard - I have tried the nitro (didn’t help and made my blood pressure drip) and diltiazem ointment (tried 4 times and each time caused an incredible itching rash).

I take oxycodone and linitial to slow down but it constipates my pouch to where o have the feeling to go (tenesmus) but I can’t go so I push and it makes it worse.
sarah - I have not tried the psyllium husk but will be internet shopping now to find exactly what you describe.

I see Dr Feza Remzi at NYU in 2 weeks. I can’t go back to an ostomy but can’t live with this pouch and the awful quality of life I have. THANK YOU for your responses and your support 💕

I'm wondering if  the organic psyllium husk product Sara mentions mixes with water as well as  flavored Metamucil does? I take the orange flavored  Metamucil twice a day - 1 tablespoon a.m., 1 tablespoon p.m. before meals.  It gives me bulk. (Don't like that it has the chemicals/synthetic flavorings in it but it helps. COSTCO's Kirkland brand used to be better, but they don't seem to have it anymore).

Taking a  psyllium product doesn't mean I still don't go to the bathroom multiple times a day and go through bouts of the "Glass", crying, pain, afraid to go to the bathroom feeling. I usually experience that when I have pouchitis; I start Cipro when that happens and things get temporarily better.

Seems like I'm on Cipro all the time though. Right now I'm on a one a day maintenance dose of Cipro. Have had my j pouch for many years.

Hi jrws- At one point, I was taking cipro and flagyl daily for a year. Still didn’t have much relief.
The tenesmus and pain like glass and battery acid is pretty much all day, but my symptoms are WAY worse towards the evening. And it doesn’t matter if I eat all day or not, or if I just consume liquids all day. This agony has no rhyme nor reason - and isn’t connected to food. I am about at my end, this pouch is worse than when I had a colon.

I'm so sorry you're suffering! I've suffered also with this pouch, but never enough that I wished I had ulcerative colitis (or an illeostomy) again. I had UC for 20 years. I ended up with colon cancer! (My UC wasn't under control at all -I only recall using a Azulfadine as my medication then ... And maybe some prednisone from time to time… ) I think they have better medications today, but at that time, if you had ulcerative colitis for 20 years, cancer was a given. Not sure if that's the case anymore?)

If you're not getting any relief or help from your present doctor for your symptoms, you need to check with him or with a new Dr .

Has anyone told you your  pouch is in good shape: Construction wise and pouchitis -wise?
Did you have ulcerative colitis, Crohn's or something else that led to your Jpouch??

Mycousin's son decided to take his pouch out because of his awful situation; he went to someone back east (Who is also very well known for revisions as well. It might be the doctor that I saw listed above may have been his Dr. as the name sounds familiar -the one that starts with an  F). If you want I can check to see who that was. I'm not sure where you are.

One thing that has helped me was the purchase of a bidet for my toilet. It's really helpful when you get all the loose burning, multiple x a day "stuff". Everything is so sensitive then so it's really hard to wipe.You wipe less when you have a bidet plus the warm water is very soothing.

I seem to be going through a remission in terms of those symptoms you describe right now. It might be because I'm taking Cipro daily. I know you said it doesn't help you. Were you taking two a day? Are you taking Metamucil before breakfast and before dinner. I mentioned above I take one full tablespoon in the morning and one full T. at night of the regular Metamucil flavored product.

I do better on things like oatmeal, bread, applesauce sometimes and  protein like chicken. Things that stuff you up!

I tried a Biologic call Stelara but it didn't help me. My doctor is talking about entivyo next. I am waiting because I'm having what I call a slight remission for now,  as I mentioned above. Rather not be taking anything unless I really have to. Take enough already!

I truly hope you find some relief. I empathize with you because I entirely understand those awful painful, fire burning, crying,  screaming out  toilet events!! I think we all have very individual experiences with this, but those of us who have similar experiences to yours can totally relate to what you're saying... you are not alone. I hope you find some relief soon!

P.S. Heather - I also use lomotil  as many times as I need during the day: If I'm going out, I take two (And deal with dry mouth! Sometimes it's hard to talk without sounding like you're drunk! But, it helps) and I take one lomotil before bed. That slows things down.

Because I also suffer from some osteoarthritic pain and neurologic leg pain, I will use tramadol at times . (I don't want to get addicted to it so I don't use it very often) Because it's an opiate, it does constipate and it really helps!

I know some people use tincture of opiate. You need to ask your doctor about that. I bought some, but I really haven't used it much.

I used tincture of opium that was prescribed by my doctor while I was going through cancer treatment after 15 years of well-controlled UC with good old sulfasalazine, that made my pee like sunshine.  It was well controlled for most of that time, but not at first, and I think the scar tissue that formed when I was first sick became the cancer, but who knows?  Maybe it was the long term use of the sulfa drugs that caused the cancer?  Or just random chance.  At any rate, I would NOT recommend tincture of opium to slow down the guts.  There are too many side effects to use it regularly enough for what is most likely needed.  I was an emotional basket case because of the constant rollercoaster ride of being blissed out right after taking my tincture and then the come down before the next dose.  In my opinion, recreational use of opium on occasion is A-OK, but for any sort of consistent therapy, it's not the road to healing.  Also, I'd say it's totally OK if death is imminent. 

Hi, I have had a few fissures and found that a bidet coupled along with calmoseptine or triple paste works wonders. Initially I purchased a handheld bidet which is essentially a squeeze bottle with a long spout. This helped my skin heal greatly and the warm water is very soothing. https://www.amazon.com/2PCS-Pa...ps%2C334&sr=8-14

Eventually I bit the bullet and purchased a bidet from Tushy and installed it myself, which was very easy. It was fairly inexpensive and over the past month of having it, I've definitely gotten my money's worth. https://hellotushy.com/product...ater-bidet-tushy-spa. Now whenever I have to use the restroom while I'm out, I miss the bidet so much! Wet wipes work well, just make sure you pat rather than wipe and also make sure you pat yourself dry after.

Sitz baths are also great. If you don't have a bathtub you can purchase a small basin that sits on your toilet seat. Just fill it with warm water (as hot as you can tolerate!) and mineral salt if you like. https://www.amazon.com/Foldabl...TG9nQ2xpY2s9dHJ1ZQ==

Another idea is installing a shower head with a removable wand, it makes showering hard to reach/sensitive areas much easier.

I would echo what jrws is saying about getting your pouched checked out. 3 months after my takedown I was diagnosed with chronic pouchitis. I've done Cipro/Flagyl and prednisone courses as well as Entyvio. The steroids, cirpo and flagyl only worked short term, the Entyvio did nothing. Life was terrible for a good 1.5 years, I was severely underweight and developed fistulas. My urgency was terrible and I was restless. At that point my diagnosis was changed from indeterminate IBD to Crohn's. At my surgeon and GI's suggestion, I met with Dr. Shen. He has put me on Tinidazole, which is the "next generation" flagyl for long term. I've been on it for 4 months now and have no side effects like I did with regular flagyl. I'm even able to enjoy a few alcoholic drinks while on it, something I couldn't do with flagyl. Dr. Shen also had me do a 30 day course of hyperbaric oxygen therapy to help with the pouchitis and fistulas. This was a big time commitment, luckily my work was fine with me taking off 2 hours/day for six weeks straight. I was also lucky that my insurance covered the whole therapy. Finally, my GI put me on Humira. I've been on it about the same length as the Tinidazole. I went from having 10 - 12 BMs/day and 4 overnight to 4 - 5/day and 1 - 2 overnight. It's worth asking your doctor about Tinidazole and Humira in my opinion. It's improved my quality of life significantly.

I had my j-pouch placed due to FAP. Been ileostomy free since 6/2021. However it has not been a smooth ride for me either. I have horrific hot shards of glass sensations with spams and sharp pain with bowel movements and incontinence with severe spasms. Have had  chronic pouchitis  which I have been on cipro, flagyl, prednisone, cefdinir ( that work on first cycle but not when repeated). I have a bidet, I use fiber capsules, I did pelvic floor PT for tight sphincter and still use vibrating wand at home every other day. I got put on a compound suppository (181.5 mg gabapentin, 91 mg diclofenac, 60.5 mg baclofen and 60.5 mg cyclobenzaprine) twice a day and it helped greatly initially. I use vibrating device and or ice pack between buttocks to help break pain cycle of the burn. I shouldn’t have to grip the door jam and the toilet seat just to have a BM.  Nights and early am are my worst. I also take lomotil 2 tabs 2x/day, lyrica 100 mg 2x/day, nortriptyline 2 at bedtime, a lidocaine ointment 2x a day, Bentyl 2xday. I even tried GABA.  Maybe some of  this will help you Heather. I feel your pain- literally.Looking for a new GI doctor that thinks out of the box & specializes in pouchitis/tenesmus/ proctalgia fugax). I live near Wilmington NC, but will travel anywhere at this point. My original surgery was done in Florida at Cleveland Clinic- not a great experience so don’t want to go back there.  

In my early days of j pouch I had the same feeling of pooping razor blades and glass. It was excruciating and I dreaded having to use the toilet, which was often. It turned out to be anal fissures inside the anal canal and around the outside. I still had a community nurse in those early days and she gave me the best piece of free advice. Get a “sitz” basin and use it as often as possible. As other members have noted, it’s a small plastic basin, much like the kind you use for washing dishes.  But a sitz basin has small holes at the back to allow water to safely overflow into your toilet. Place the sitz basin on your toilet rim (the lid must be up!) and lower yourself, slowly, into the basin allowing the displaced water to overflow until you are comfortable settled, and just sit in it until the water cools. I used to sit 10 minutes, two or three times every day. Try to use it after a bowel movement to soothe the area.

The idea is when you sit in very, very warm water, blood circulation is increased to the anal region and this helps heal your tissues on the inside. It won’t make you bleed or anything, it’s just a nice, soothing soak for your bum if you don’t want to fill a big bathtub. Besides, sitting in a hard tub might hurt your sore bum even more. Sitz basins can be found in major drugstores, and always in medical equipment stores. Even on Amazon straight to your door. I got mine for around $12 a few years ago. I kept it, just in case, but I’ve never needed it again, thank heaven.

It healed my fiery fissures within a week. It was the best advice I ever got during my recovery days. Try it. It’s an inexpensive, safe, non invasive way to try and heal your fissures. Just make sure the water is as warm (NOT hot) as you can tolerate, to encourage blood circulation. Some sitz basins even come with a plastic bag and hose for refilling the basin without getting up! Who thought of this? Thank goodness they did. Good luck to you.

I never got past the glass stage

Or what I called putting a lit match down there.

I had the urge to go 24/7 the last 6 to eight months in top of it.

I'd get home from work. Yes. I put in eight hours every day. But I'd get home and fall face first on the bed for 20 minutes before cleaning up. It was too much.

Never had fissures. Or any explainable physical reason.

Two years if it with no resolution and none in sight.

A person can only do that so long before they give up.

Two years was my point. Done.

I hope you figure it out and get past it. It's no way to live.

Richard.

Richard-What a mystery!

It reinforces my feeling that we should try harder to refrain from removing parts of our bodies, especially the internal parts.  Probably the UC was really bad when you had a colon?  Mine wasn't bad at all.  I just got the colectomy due to colon cancer.  Probably shouldn't have done that, but I kind of freaked out.  The C word.

Last edited by Sara Marie

I had my J pouch surgery in 1988 - yes I am old . For many years I had no problems. In about 2008 things went down hill slowly. BM frequency increased, and as a result I had severe burning around my anus. I was told to try Colestyramine sold as Questran Lite powder. My problem - may be yours? - was the acids produced in the gut/digestive tract are no longer absorbed/diluted because of the removal of large intestine. The Questran (somehow) neutralises/prevents this acid reaching the anus and burning as it gets out.

Also Questran lowers you cholesterol .

@Sara Marie posted:

Richard-What a mystery!

It reinforces my feeling that we should try harder to refrain from removing parts of our bodies, especially the internal parts.  Probably the UC was really bad when you had a colon?  Mine wasn't bad at all.  I just got the colectomy due to colon cancer.  Probably shouldn't have done that, but I kind of freaked out.  The C word.

Trust me. I was miserable before.

It had to go.

Richard.

P. S.

Cancer was part of the equation. I had had uc so long and was miserable.

Chances of cancer?  No one gave me odds. But it could happen the longer I kept it.

(the colon).

It was part of the discussion.

I'll never know.

Many other points were involved too.

Quality of my life was first. I could not live the rest of my life in a bathroom. Or by one.



No one should take having their colon removed lightly.

That in itself is serious surgery.  And it will change you for the rest of your life.

There is no going back.

What we end up with we alone have to deal with it.

Whether it's a j pouch. K pouch. Or end ileo. We all have to adjust.

Last edited by Mysticobra

Any hints on making Matcha tea easily? Just had a conversation yesterday with a friend who uses it all the time. She says the best one is from Pete's coffee,  if available to you. I have not tried it yet, but she says it has some delicious spices in it; she's a pretty healthy "eater" in whatever she chooses. Also wondering. what kind of equipment you need to make it correctly & easily?

Glad to know there are other people out there who seem to tolerate the tea and don't find themselves in the bathroom more from using it.

I wonder why so many of us have a lactose intolerance? Also wonder what the connection is to inflammatory bowel disease/ ulcerative colitis?

I make matcha with a tiny whisk. I put a little hot water in the cup, then the matcha, then whisk it, then poor more water in and add the stuff I like: I usually add turmeric tincture (homemade) and ginger powder to make it spicy.  Then I add a teaspoon of honey and oat milk.  I love the full fat Oatley brand and if that's not available, their original.  It doesn't have sugar.  I have found natural sugars are much more tolerable.  Also green tea doesn't seem to bother my guts but black tea can be a little rough if I have it strong and daily, so I don't do that any more.  I don't have a frother or any special gear.  Just a teapot and a whisk, though sometimes I just use a fork.  I also add collagen and l-glutamine to my drink to help strengthen connective tissue and repair the gut lining, respectively.  The spices help disguise the taste of those things, plus turmeric/black pepper tincture and ginger are good for joint pain!  So my morning matcha is basically a big cup of yummy medicine.

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