Hello Avery,

My son had his 3rd and final operation Oct 20th so this is new for him also. The pain he had after surgery this time was worse than the last 2 surgeries. He was on diluadid while he was in the hospital. If you feel you need the pain medication take it why should you suffer. With each dose he got he spaced the next dose out farther each time until he didn't need it.He did have trouble urinating and was threatened with a catheter but after drinking a lot of fluids he did urinate. They say it can take 3-5 days to pass stool. You have a new plumbing system. I don't know if you feel this but after he ate he could feel the food going through his intestines and could feel it making the turns that is when he had the most pain.

As far as eating you should stay on a bland diet 4-6 weeks after surgery to give your bowel time to get used to its new job.

Good luck!!

Hello, Avery099.  Your pouch is very new so you might feel the discomfort for a short while longer. Remember it will pass, and as each day goes by the pain will lessen. After my reversal, I felt odd sharp pains inside, like things were shifting around looking for a place to settle. If I sat on the sofa, I would feel a sharp pain shoot up into my stomach. But it passed and now I feel no pain at all. You managed to get past the pain from the big surgery; the reversal pain is much less, much shorter period, you'll see. If your pain is in your abdominal area, maybe try a heating pad to encourage blood to the area?  If I felt pain at the join, it lasted a couple of weeks, approximately four weeks and then it was healed. Give it some time. Get lots of rest and sleep so your tissues can heal.

When I had problems releasing stool, I learned that leaning back slightly, or sitting very tall and straight seemed to let gravity take over and release stool. The new j pouch is curved to fit inside your body so straightening it might help you. It works for me whenever I'm stuck, so to speak. Don't strain. When my skin became irritated or raw I used Zincofax, the type for babies' diaper rash and for me it worked within a few hours to heal. Even when I developed fissures, the Zincofax healed the external cuts. The cuts on the inside I did my best to help them by eating soft foods. 

My diet the first few weeks (after both surgeries) was white rice with a poached egg on top. This gave me the B12 we need, and protein from the egg to heal tissues. Lots of fresh steamed fish with olive oil and herbs. Tofu. Baked chicken with olive oil, grated fresh garlic, dried oregano and a whisper of lemon juice made it chicken souvlaki to keep it from being plain. I miss leafy green veg and citrus fruits, but I'm looking forward to it next year when my pouch is more grown up. No spicy foods for me because it burns on the way out. For protein, try smoothies with soy or almond milk, Greek yogurt or half an avocado, frozen banana. When I wanted a snack or when hungry between meals I would microwave a potato or a sweet potato, split it open and drizzle a bit of olive oil and salt, or grated some hard cheese for salt. Easy for the pouch to digest. It will get better as your intestine learns its new job. Go gently and patiently now that your pouch has started its life work. I hope you will feel better as each day goes by!

If I were you, I'd be tapering down from the oxycodone now. Every 4 hours is pretty frequent at this point. Especially if you have had opiate problems in the past. This much opiate can be slowing your gut too much and making things more difficult. Take-down is very minor surgery compared to the pouch formation. By now, hydrocodone should be adequate. As you know, the longer you stay on it, the harder it will be to come off.

Jan

I was able to come off of the oxycodon so yesterday was a horrible day of withdrawal. I have been so surprised on how hard this surgery has been. Most people I had talked to/read said this would be much easier but this has actually been the worst for me so far. I am constantly running to the bathroom and not being able to go so just sitting there crying in pain. 

It will get better!  Your body is going to take a while to heal.  I was lucky, as I only had "soreness," which I could handle, versus pain.  I hardly needed any pain meds after my "last" takedown.  But nowadays doctors are a bit more careful with pain meds, and rightly so.  I had six major surgeries in four years and I recall lots of my hospital roommates that were all into the pain meds.  They'd be talking to me casually one minute, then the nurse came in, asked what the pain level was and they'd say, "10," then right back to talking to me.  I know everyone is different, but please be careful.  I also have had family member with drug addictions that ruined their lives, so I'm extra militant about the dangers.  Hang in there, you have a great life ahead of you!

Interesting... You guys got pain meds for reversal?  I got nothing at all, not even in hospital (paracetamol on request but i knew that would do nothing so i didn't bother)  i was told that only opiate based pain killers would help, but they would slow the bowel and generally be counter productive!  (Which could be why Avery is struggling now).  Pain was manageable (just) but cramping fairly severe for the first 3weeks or so, especially trying to walk to activate a sleeping bowel.

In my 4th week now and pain had eased, actually planning on driving later today.  Dunno if I'm angry or happy at not being provided pain relief, but guess it worked out for me.  

Pain relief can cause issues,would be best to get off it as early as you can!  Of course if the pain is beyond the realms of what you can handle you may need to phase it down, perhaps take a dosage at night so you get some sleep?  If it really hurts maybe a chat with the doc!  

Pain mostly caused by gas and food, so stay soft and on the ileo allowed list for now!  I started with the vegetables yesterday and got a bit of belly ache and cramping, so i know that was too much too soon.   Fish and chips, pizza, rice and quiche were safe for me.   I really craved the chips with lagging of salt and vinegar

I think doctors differ with pain meds, but anyway I came off mine within a week of the surgery.  Unfortunately, I found out the root of my problems is probably pouchitis as I identify with most of the symptoms. I saw my surgeon yesterday and am starting antibiotics (and going to keep up on my probiotics). I think it is helping but there is a lot of cramping pain, discomfort, and still many loose stools . It feels like C-diff from my UC days!

Avery, like you say different doctors seem to vary tremendously, im in a similar place to you, just here for the advice as only 4 weeks out myself.   I can relate to your symptoms, only this last week the pain has eased but I still get painful spasms, especially after eating (although some foods are safer than others).  The incomplete emptying thing is annoying too, and a bit of a feature among J-pouchers from what ive read.  The pleasure than can be derived from having a painful spasm whilst in the bathroom (so you can release) should not be underestimated :-)

Don't want to draw any conclusions at all, but It does seem a little strange that a doctor would diagnose pouchitis and prescribe antibiotics this early?   Its going to take time to settle down and you are only 1.5 weeks from your op, everything is still going to be very inflamed and wont have found it rhythm yet.   Was your doc confident in the diagnosis?  What tests did he do?  Taking antibiotics (as im sure you know) can do more harm than good, but your definitely doing the right thing take probitoics at the same time to mitigate.  Course you and your doc are the experts in your health, just wanted to mention that.

Im guessing your not in the UK (you wouldn't even get a doctors appointment that quickly over here, let alone a diagnosis haha).  What probiotics are you on?  Im currently on the symprove and seems to be going well.

Congratulations on the takedown surgery! I had mine earlier this year (in February) and can share a few bits of knowledge from my recent experience. 

1. I despise taking opioid based meds. Every time I would have any surgery or procedure they'd write another script for tylenol-3 or stronger, which basically means if I wanted to kill pain I had to not drive, and be a zombie for the day. When I'd stop taking it, I could feel my mood just sitting in the dumps for a long time, over a week or two sometimes depending on how much I had been taking.

After takedown, one of the biggest issues I was having was the feeling of having to go. It was not just a nonchalant "hey you should go use the bathroom." It was a very urgent and painful feeling. I actually scheduled an appointment with my surgeon to be examined because I thought it might be inflammation or pouchitis. He found nothing of the sort and chocked it up to needing to adjust to my new body. Which never happened on its own. 

My solution? This is gonna sound wacky but I found a high strength turmeric extract with bioperine. There are a few formulations, but veer towards those for body (meaning avoid ones that are complexed with phospholipids like Curcubrain, for example) and stick to stuff that's intended for full body absorption. As far as how to dose it, I found the best result by taking a full gram all at once in the morning, with some fat if possible. The fat helps it to absorb (as does the bioperine in the actual pills - don't get one without this ingredient). People look at me like I'm a loon when I tell them I use turmeric for pain but it has been magical for me personally. Bowel movements that previously would have been prefaced with pain and urgency now just come when I get the sense that it's time to go. 

All that in mind, remember that you just underwent a procedure where they mess with your intestines which means the whole thing sort of falls asleep to some degree. I remember when mine woke up, I had some SERIOUS cramping for the first week or two as it started to get that peristaltic action going again. It's a big muscle after all, right?

2. Urine for me was similar. I had a lot of success simply standing. This is how I avoided getting re-cathetered multiple times throughout the process (I wasn't so lucky after the first surgery... I decided then and there I'd learn how to never get something shoved in me like that again). Basically just standing up and walking around, rather than sitting, when you know you've got some urine in your bladder, helps to increase the urgency and agency with which you can feel the right muscles. After they hit you with all the strong drugs and play with your insides, your nerves seem to lose that mind-brain thing that lets you say "push when I say push." Let gravity help you out and push things down for you. As your nerves reboot it gets a lot easier, as with the bowels. Things might still be waking back up for you!

3. First few weeks of recovery, just try to stay mentally positive. Don't beat yourself up for not being at some certain stage of recovery where you think you should be. Just take it by the moment, and do what you can, and what you feel safe doing. Your body just underwent some serious changes and will do some adjusting. Eating will not be as much fun at first because of the pain you will inevitably feel (but I hope you try the turmeric - if you do let me know how it goes!). That was probably the biggest weird thing for me: I had gotten used to eating things and watching it come out of the bag hours later and didn't really feel discomfort from that. When I was feeling the pain just from eating and having to poop I started to think "what have I done? was this a mistake? oh no!"

Ditch the doubt. Just stay positive. Know that there is light at the end of this tunnel for you. 

(p.s. I HIGHLY advise installing a bidet lid on your toilet. This is probably one of the best investments I've made with regards to my hygiene and my disease/J-Pouch. Pooping will be much more often than before, particularly as you adjust your diet. Staying clean helps tremendously not only with preventing further problems, but also with your own confidence and comfort. I sprung for one with a few extra features, but you can pick one up for much cheaper and it's WORTH it. )

Just a warning about antibiotics. If you have a history of C. diff, be very cautious with the antibiotics. Flagyl is the safest.

Pouchitis is uncommon early in the take-down period, but it does happen.

Jan

Hello Avery, I had my reversal 6 weeks ago. I also experience a lot of pain post-op, more so than the original larger resection operation in February this year. Actually, I found it the worst part of my journey after the rectal cancer diagnosis, major resection and chemotherapy treatment. I still require an almost daily paracetemol/codeine tablet to ease painful spasms in my jpouch. These were really bad after the resection and have now eased quite a lot but have not disappeared yet. My surgeon assures me they will eventually settle..... I hope soon!

The awful initial uncontrolable diarrhoea has stopped and I've found drinking kefir for b'fast (a probiotic yogurt drink) really helped put a good lining back on my bowel and firm up my bm's. It's also delicious as well as being good for you! I'm still having frequent bm's but hope this will eventually settle into a more manageable routine where I don't have to worry about where a toilet is. I'm still sticking with a bland diet and not ready to try a curry just yet!

It's early days for you so perhaps give the kefir a go, you can usually pick it up at health food shop.

Good luck!

New question. Does anybody take any kind of medications after their surgery to prevent the break down of their pouch?

Dee, can you explain what you are talking about? I don't know what you are referring to.

Jan

I recently heard if you do not take a biologic your pouch will not last. Also does anybody have any anemia problems? I am very low and want to give me IV iron.

Dee, unsure what you mean by Biologic?  Do you mean Probiotic?  I don't think there is any research that shows there is anything 'mandatory' you need to do for your pouch, but it makes sense to go as easy as possible on it (this also makes sense for the rest of the body too).

There is some evidence that probiotics are beneficial to the J-pouch, although any doctors in the UK say the link is tenuous and wont prescribe unless you have chronic pouchitis, even then they are reluctant.

Eating simple healthy foods is probably the best thing you can do to help your pouch.  But don't forget to have fun occasionally too.   I had a couple of rum a gingers last night, first time in 3 months.....AMAZING, and I am partial to pizza lol

Dee, pouches sometimes fail, but what you've been told about them not lasting and requiring biologics is, I believe, nonsense. Plenty of folks have anemia problems, and some get iron infusions. You can do a search on this site for their many posts to learn more.

Hello, Dee. Also do a search on this site to read posts from members with longest serving pouches. Some pouches are 20, 30 and more years old. Be good to your pouch and it will take care of you. Eat whole foods, unprocessed foods, as often as you can and enjoy the odd splurge and you will learn what is good for your pouch and what isn't. I learned that my pouch does not like lemons in a glass of water (my colon did....) but it welcomes a good steak or vegetables roasted very, very soft and carmelized. You will learn as you go along. 

DEE2015 posted:

I recently heard if you do not take a biologic your pouch will not last. Also does anybody have any anemia problems? I am very low and want to give me IV iron.

 

As far as probiotics, start light with regular eating of GOOD yogurt (read:not Danon) and make sure you vary your diet. Diverse diet helps to ensure that bacteria stay in balance. Staying about from large amounts of simple carbohydrates is also a good idea (simple sugars feed bacteria and can jack up inflammation) Don't do too much food that's acidifies your system, and you'll probably want to steer clear of spicy food as a general rule. Capsaicin has caused me some serious grief!

As for the iron/anemia issue, the only thing I've found that increased my hemoglobin counts reliably was drinking juiced greens (kale spinach and broccoli) and scheduled exercise (5+ times a week). I had been under average for a while but once I added those in (with doctor approval, post surgeries) my blood tests came back higher than usual for hemoglobin. I also feel less lethargic and I'm getting better sleep as a result of the exercise. Only anecdotal I know but it's the best I can do!