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Hope everyone is well. I've read so many posts but I never came across a post that had my very unusual symptoms. I'm hoping that I'll get some advise/ help. I had UC and my colon removed.  Just had my take down surgery in May. I've had complications ever since. My 2 most issues are the reasons I'm here today asking for advice.

1> My gas pain is very intense.  The only way I can describe it is that it feels like contractions.  It's like a wave of sharp pressure and pain.  It's loud enough that people around me can hear it.  The only way it will stop is if I lay on my side and release it.  But of course thats not the only thing that comes out. Doctors just prescribe me simethicone but it doesn't help AT ALL. Nothing works.  The pain and pressure is unbearable. I can't sit for long periods of time nor can I walk. As soon as I lay down the intense pain starts,  slowly building,  coming in waves. I hardly eat.  I'm down to 2 meals a day. I keep myself hydrated. My diet is mostly brown rice and baked potatoes. No processed foods.  Whole wheat and plant based diet only.

2> This may sound weird and tbh, I'm embarrassed to even talk about it but nobody can give me any answers. I'm hoping someone here can help me.  I'm unable to sit on the toilet and have a proper bm. The only way I can have a bm is to lay on my side and that's when everything comes out.  So I literally have to wear a diaper all day long.  No matter how long I sit on the toilet and no matter how strong the pressure is.  Nothing is coming out until I lay down. This also means I have incontinence, especially at night.  It's so exhausting and frustrating to have to wake up and clean myself all night long.

Please help me with some info or any guidance.

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This sounds very hard, @SadieM1210. Do you think you are producing an unusually large amount of gas, or just having lots of pain with a fairly normal amount of gas? My gas used to be very noisy, too (once during a job interview!), but that has been much quieter for many years now.

It’s important to work out a way for you to poop on the toilet, and there’s nothing to be embarrassed about. It’s essential that your doctors know exactly what’s going on. One possibility is pelvic floor dysfunction, which could be relieved with pelvic floor physical therapy and/or biofeedback. It’s also possible that exploring more positions on the toilet, especially bending forward, may help. Another possibility is that there’s something structurally wrong with your J-pouch, and that would need time and attention to work out. Until you are pooping without difficulty it will be hard to keep things from backing up and causing pain.

That sounds really weird, you should contact the hospital where they did the surgery. I don't know if a floppy pouch syndrome can have the effect, that you can only poop when lying on the side. But if there is a prolaps that shuts the anus except when lying on the side that would make sense.

Another possibility would be a kink in the small intestine when you sit / stand. Maybe caused by adhesions. But then at least the content of the pouch should come out on the toilet.

Anyway your doctors should find out what it is. An MRI is done in lying position, but on the back, and it has a good resolution for soft tissue like the bowel / pouch. I just read that there is a MRI dynamic defecography imaging. Floppy pouch can also be examined by a careful pouchoscopy.

Regarding pain from gas, I know that simethicone is sometimes not a big help. For some people here antibiotics are very helpful (for pouchitis, like metronidazone and ciprofloxacine) to reduce bacteria, that can grow very well when there are obstructions. Ask your doctor if he / she agrees. That may give you some relief. But in my eyes that gas is only the secondary problem.

@Scott F  I've never heard of pelvic floor dysfunction. I'm going to research it and ask my Dr if that's something that relates to me.  Thank you.

@SteveG I usually have CT scans done but no Dr has ever thought to do an MRI. I have an appointment coming up on Friday with a new specialist so I'm going to discuss my issues and ask her about what you mentioned with the MRI and also the possible bound blockage with getting my dilation done.

I had to find a different specialist because I feel like I wasn't getting any answers or any relief.  They would just prescribe me antibiotics and send me in my way. Thank you for your help.

I have the best success on the toilet leaning forward, hands on the ground. Also stand up, bend over for 15 seconds or so and sit back down. When I do that I can literally feel stuff shift down and then it will release. I did pelvic floor therapy. Taught me some good exercises to strengthen my core, learned a lot on how everything works and also got some good breathing techniques to relax me and my body. It was once a week for 12 weeks.

SadieM1210, there's one thing I didn't quite understand. You said the pain starts when you lay down. Isn't it there when you sit or stand? When you lay down, there is less pressure in the abdomen. I sometimes experience more bloatings when going to bed, so I often lay down before to get rid of them.

I know that kind of pain when the small intestine wants to move things on and gets blocked at the pouch, especially when there are bloatings. That also gave me a rumbling noise that could be heard when there was silence in the room. But usually you get relief as soon as you go to the toilet and poo, what seems to be a problem for you.

You mentioned CT scans. Were that live motion scans with little radiation and a contrast agent? And where are they doing that dilatation, at the pouch inlet? It must have started almost at the same time as your takedown in May.

Btw. have you tried an inverted position like half a shoulder stand to release gas? For me that's safer than lying on the side, gas always goes upward.

@SteveG my gas pain is constant no matter I'm standing or laying down.  But when I do lay down the pressure increases and also I end up having stool come out because remember that's the only way I can poop. My CT scans have been of both still and live motion. Non of the Drs have said anything about blockage or a fistula or if the j pouch shape is messed up.  My dilation is at the pouch inlet. When I had an ostomy this gas pain did not exist.  I did have gas but it was normal amount.  After my takedown surgery my body is producing a large amount of gas and for some reason its extremely painful. I've started doing some yoga positions which have helped but it's not the relief I'm looking for. Hopefully this new Dr will have some answers for me on Friday.

Just another thought. If your scans showed no obvious blockage, may your sphincter be cramping because you have to tense it often to hold the pressure from gas inside the bowel? Then you would have to work in the opposite direction, i.e. try to relax your pelvic floor by breathing deeply into your stomach when lying (when you put your hand on your stomach it should move up when breating in). Or you can try to tense the sphincter / pelvic floor really strong for 10 seconds on the toilet, like trying to hold your stool back. That helps to relax that muscles completely afterwards when you release them (the principle of progressive muscle relaxation).

A warm sitz bath may also help for relaxing.

You wrote that you have a very strict and healthy diet. Especially brown rice is said to have a stuffing effect. How many BM do you have per day (approx., I know it's difficult to tell when you can't have regular BM on the toilet) and is your output more solid or liquid? Have you tried psyllium husk for regulating stool consistency?

I wonder whether brown rice could be contributing to your problems. Brown rice is high in insoluble fibre, and that’s something you need to minimise in your diet, especially when your j-pouch is new. Also, with a new pouch, even potato skin could be too hard on your digestion at this early stage.

Have you tried eating a low-residue diet? If this helps, once you are feeling better, you can gradually introduce a wider range of foods.

Along with the low-residue diet, you could try having smooth Metamucil just before eating. This creates a kind of gel that could help your bowel movements when you are sitting on the toilet. (Please be very cautious trying it.)

I’m sorry you are having such a tough time. Your surgeon or continence nurse should be able to order testing to see why you are having so much trouble with BMs.

By the way, I just remembered reading about someone with a j-pouch who was having problems. It turned out that their pouch was flopping over. Of course you would need to get scans done sitting and lying down to check this, but maybe your pouch is flopping over when you are vertical, causing a fold that won’t let fecal matter past. Then when you lie down, it unfolds and the pressure of the backlog of fecal matter is getting pushed out overnight.

I am so sorry to hear you are having so much trouble. This entire process seems so different for everyone, so it is scary thinking "Is this normal!??!" several times a day! The best position I have found to pass a BM is leaning way forward while on the toilet (like some have replied already). I received many helpful, different tips on how to position, but I think it really just comes down to each individual.

Also, I would 100% recommend pelvic floor physical therapy as well. I started in between surgeries this year, so have been attending for over 4 months now, and it has made an immense difference! There are things involved with muscles down there that I had no clue about!!!! My therapist has taught me proper ways to activate my pelvic floor muscles, what not to do when going to the bathroom and has helped me find so much relief when it comes to pain from straining/going incorrectly.

Hopefully you get everything figured out soon and you find the things that work best for you and your journey. All the best!

@SteveG @Kushami @Li__ thank you so much for the feedback and advice.  I really need to get a floor pelvic therapist. Can my Dr send a referral or is this something I find outside of the hospital?

To your questions about my diet.  When I first had my surgery back in May, I was on a low fiber diet. I still had the same symptoms as I do now.  I slowly started adding more fiber to get more nutrients, energy and to change my watery stool to a more thicker consistency. I've tried a bunch of different diets but the whole wheat one suits me better.

I had a talk with my nurse practitioner today because my Dr was unavailable.  She went over some of my results and they are going to prescribe me a steroid to help with my inflammation and that should also help with my painful gas. They,  unfortunately have not figured out my weird situation of only being able to have a bm when I lay down.  She's nor the Dr have ever heard of this.

So I'm back to being disappointed and depressed. They didn't even try to see if they could figure it out or reach out to other Drs. I mean they could at least reach out to a specialist in a bigger city who may have more experience, like the Mayo clinic?

What do you guys think I should do next?

@SteveG @Scott F I feel so frustrated because for the past 3 years I've been passed from one Dr to another.  When they can't answer my questions or help me I'm referred to a specialist. I guess I should look elsewhere.  For 4 years I've been with the same hospital and I was scared to go anywhere else because they were with me from day 1. But now I've lost my patience.

I feel like maybe I need to travel to a bigger city,  outside of Kansas City. Maybe St. Louis?

I lived in Kansas City when I had my J-pouch surgery, but I flew to Los Angeles for the surgery. I was happy with my gastroenterologist in KC, though. That was almost 20 years ago.

If you can’t get a good referral from your primary care doc then you could start with the university hospital’s digestive diseases department. They *might* have somebody on the team with a strong background in J-pouches. I’d suggest starting with a gastroenterologist, and only moving on to a colo-rectal surgeon if it turns out that there’s a structural problem with your pouch.

@SadieM1210, sorry my diet advice was a bit out of sync with where you are now. Sounds like Scott F has given you some good leads.

I too am always amazed when a medical person just sort of blanks you and lets you walk out with ongoing serious and debilitating symptoms and no follow-up plan.

For ten years I’ve been trying to get help with a fainting/blood flow disorder, and this is what happened every time until I started pushing back and demanding to be sent to certain specialists.

I have read many people with many illnesses saying the same thing. Of course, afterwards, you want to say that “You can’t leave me up the creek with no paddle”, but at the time it is so dispiriting that you sort of stare at them in disbelief.

I am practising now how to speak up for myself on the spot, although whether I can do it is another matter.

Last edited by Kushami

@Kushami you are so right about speaking up.  I'm in the same boat.  I feel like everytime I've complained about a problem I've felt like I was always being backed into a corner and had to accept whatever I was being told even though it was not helping. In the past few weeks I've being trying to speak up about my gas pain and asking for medication but my Dr will not give me any and instead backing me into a corner about taking steroids they an IV since the oral meds did not work. Right now I'm feeling very depressed and helpless/ lost even.

@Lauren Of Emerald City I have 2 meals a day.  Breakfast and dinner around 6 or 7 PM. I have a few snacks in between. I mostly have teas to help with inflammation, gas and pain. But no matter what or how much I eat,  I am always having BMs especially at night.  I have gas pain regardless of what I eat or don't eat.  What I'm most stressed out about is my Dr will not even address my gas. She is only focused on giving me steroids even though the oral pills made me feel worse.

@SadieM1210 what kind of antibiotics did you take in the past? Have you tried the combination of Cipro and Flagyl? It seems to be very effective for pouchitis and dysbiosis, as aerobic and anaerobic bacteria are adressed by that combination.

I was treated for 4 weeks with Flagyl only (as a preparation for a probiotics treatment with VSL#3) during my first years with the pouch, but it got me nowhere.

@SadieM1210 posted:

@Lauren Of Emerald City I have 2 meals a day.  Breakfast and dinner around 6 or 7 PM. I have a few snacks in between. I mostly have teas to help with inflammation, gas and pain. But no matter what or how much I eat,  I am always having BMs especially at night.  I have gas pain regardless of what I eat or don't eat.  What I'm most stressed out about is my Dr will not even address my gas. She is only focused on giving me steroids even though the oral pills made me feel worse.

I eat 3 meals a day and 3 snacks a day, thag has helped me with gas a lot along with water drinking. And especially exercising.

Since you have an appointment with a specialist coming up, definitely bring up everything and let me know how it goes.

Hope you feel better hon

@SadieM1210 strictures are typical for a Crohn's. Perhaps that's why she thinks so. Your stricture is treated with endoscopic balloon dilatation for several months now. So there must be quite a bottleneck at your pouch inlet. Your CT scans should tell how much diameter is left and how long the stricture is. Do you know? Has dilatation been successful so far?

If that stricture is the root cause for your problem with having regular BM then I would agree to Kushami that a low residue diet would be better, anything that does not bulk up your stool and lead to a near obstruction in upright position. Unsoluble fiber produces bacterial fermentation processes at the end of the digestive tract. That promotes gas problems.

You may try and prove that your stricture is causing those problems if you stay on a fluid diet for several days. Get yourself full caloric fluid nutrition for replacing food, drink enough additionally and see if things clear up and you can have BM on the toilet.

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