ready to give up

Have you gone to see a GI doctor who is pouch knowledgable? They are often far better and far more knowledgable with pouch management issues. Also did the surgeon do a scope? As I think I mentioned to you a few weeks back, sometimes things are not normal in the recovery. And why wait longer to find that out. So if you haven't get yourself in to see a GI doc, I would advise you do that now.
best of luck

yes to both and no complications there. im just questioning my pain threshold really. i think im just spent. my buddy is at a year now and doing great but said everything im feeling he felt for almost 6 months. i swear if i could reduce or get rid of the gas id be perfect. its the reason for my pain, strain and frequency. gas-x seemed to make things worse. also read many suffer from gas early on and it gets better with time...

I can't remember, but have you tried a course of antibiotics, Flagyl or Cipro? If not, this sure could be bacterial overgrowth or pouchitis. I know for me, I got relief within hours of my first dose of Flagyl, which completely shut down my gas factory and made me sane.

Even if your pouch looks pristine, this can be bacterial overgrowth.

I would also skip the rice for now and try something even more simple, like Ensure, until this blows over. For some, carbs are like throwing gasoline on a fire.

Jan

my docs gave me a stool test for bacterial overgrowth and more so lets see. does the gas come back after youre done with the antibiotics?

I still have alot of gas....10 years post takedown.....but it isn't uncomfortable at all. So, I think it was at first but over time it stopped being so. In fact, I like gas because it helps to push the effluent out of me. That end of the B.M. explosion is very welcome and without it I don't feel "finished".

Not for me, but I periodically get pouchitis type symptoms, maybe once or twice a year, and a 10 day course of Flagyl puts me on track. I don't really worry about whether it is pouchitis or bacterial overgrowth. All I care about is that it works.

I don't do tests for it. But, this early in the game, I can see why they might want to pin it down, particularly if it might be something nasty, like C. difficile. Not to worry you about it though. When I was having pouchitis that would not go away (wound up on Flagyl for about six weeks), my doc tested me for C. difficile. It was just a stubborn case, along with too many NSAIDs...

I never heard of bleeding due to stretching your pouch?!? Typically, that is cuffitis or perhaps pouchitis, or maybe a fissure.

CeCe- I know what you are talking about. That is just the normal blast of gas at the end of a bowel movement for me. But, when I have pouchitis or bacterial overgrowth, the gas is terrible, all the time, churning and cramping. Way different than the normal stuff.

Jan

yes they are testing for cdiff too. i would assume a new pouch could bleed a bit when pushed to the limits. my original surgeon said a ting of blood is nothing to worry about this early on and my new guy seemed to concur. this gas is so so excessive. ill sit and expel gas for a full ten count then return 3 more times per hour with the same. again if not for the gas id be so happy. this is messing up my recovery...

Evening

There are good and bad days for me.Have you ever addressed avoiding dairy products?
I also see blood on occassion but I also have Endometriosis .Trust me on this if you spoke to me the other day I was in so much pain.I clamp off and must wait for the spasms to stop.No medication helps when I have a flare up of Endometriosis.I now only eat rice on occassion.

Have you ever ask how many Bowel movement you should have in a day.Both surgeon and Gastro md told me to except any where from 6 to 10 a day.Trust me I was living in the lavatory at a point.
I know that this forum has been the best medicine for me.I know I am not alone.I know many of us have not gotten the proper guidance from Doctors.No shoe fits all but when I read here I say this is all about me.
I have been adding more and more foods.Veggies I puree.I notice more and more if I dont drink enough water the next day I have woes also.
Just know you are not alone.
It is happening to all

Cassiecass

Chasingtime,

I would suggest walking as much as possible. It may help relieve some of the pent up gas. Walking wakes up the bowels and keeps things moving. If this is purely gas, it may help.

cass, i just added cheese sticks and dont notice a huge difference in gas but im up n down in that dept.

jean, i have been rather inactive so i will try to walk more to see if that helps. gas is the devil in this recovery...

Chassing...
Yes, milk products are real gas producers especially if you have lactose intollerance and most colonless people are to some point...I was warned preop and didn't touch milk products for 2yrs (introduced them slowly afterwards and now eat yoghurt, ice cream, hard cheese & creamed soups but Never strait milk)...You sound like me after a pizza (rare event)...my stool is so gassy it litterally comes out in bubbles (TMI?)...Cut out the lactose, go onto boiled potatoes instead of rice, use olive oil or a touch of butter (not much lactose in butter) and salt (you can mash them) and see how you do.
That was may dad's go to recipe when I was a mess...cut out all sugars and eat chicken, fish, chicken soup, tomato soup (full of potassium), bananas and apple sauce...avoid the bread for 24hrs and see what happens..
Not sure but this may help you. Drink tons of hot tea too (green or herbal)
Sharon

great advice! my cheese is lactose free so ill keep that in. its def bread though. every time i add it the gas is unbearable. pepto helped a lot!!! last night. sticking with it to see how it goes. its a mild broad spectrum antibiotic so makes sense.

I had to avoid wheat for six weeks post surgery because of gas. It helped a lot. Be sure to read labels as wheat is in a lot of processed products, even bouillon!

Sue

CT -- It's not at all true that there "is no beating gas". You will find foods that are not gas producing. Take some of the great advice given to you here and experiment. We've all had moments where we wanted to give up -- however, for me they passed quickly. Hang in there, bud and give it some time.

Along with the Ensure I'd suggest plain ole Campbells Chicken noodle soup in addition to skn69's suggestions above, baked or boiled chicken is great. Also please don't strain, it just makes things worse. Gas rises, so besides walking around try to do these physical things. Get on all fours then lower your head to the floor leaving your butt up higher - gas rises. If you can lay on your stomach, it might be too early for that. I also push in my abdomen with my arms while sitting on the loo. You can sit there for a while and all of a sudden the gas releases without straining. Also it helped me to go without straining and then walk around a bit and 5 minutes or so later I'd be back to the loo and more, not always with gas, will come out without straining.

I'm glad you don't have C-diff. I had it with a colon and have had it with my j-pouch. Believe me when I tell you things can be worse. Hopefully you have pain medication for the pain plus it helps to slow things down.

I lost all of the weight I gained from taking prednisone after my surgeries, 65 pounds. If you don't have weight to loose please use the Ensure. Things will get better but slowly. It helps to look back to a month ago and compare how you are feeling now. That's a good way to measure your recovery.

Good Luck and God Bless. (Red Skelton)

guys, im actually trying to get off the pain meds. in my case diaudid 2mgs every 6 hours. i believe it has me on an emotional roller coaster. my wife just texted me from work asking if i wanted to grab a bite with friends but there is no way i can. im currently in a pain med cold sweat and its freezing out so i need to stay home but i feel like my life is STILL passing me by. i dont understand how some of you are so functional 6 weeks out. im a mess and maybe its my attitude but it isnt changing any time soon. im miserable and so so uncomfy i just cant see the light. id prob feel good if i got out and made it home in one piece but i fear it so much. im not trying to be a whiner but im just so freakin sick of being uncomfortable...

Just like everyone has their own learning curve we all have our healing curves too...some of us take longer or suffer harder than others...I heal very slowly and with many complications but I don't take much in pain meds after the 1st week...I must have a high thershold. That does not make be better or stronger or more of anything other than lucky or used to it (???) but that's me...(also it was impossible to wine alone...noone to listen or care)...here is about the only place on earth where you can cry, complain, let it all out and you will have 1000 sympathetic and empathetic shoulders to lean on to listen to you and cyberhug you...we have all been through it and have all lost hope somewhere along the way so if it takes you a little longer than the next guy...fine. Just be patient with your pouch and yourself.
Sharon

i made the mistake of starting my pain med again to drive from florida to ny 2 weeks out n stuck with it. so stupid but now its time. another thought though. i was given celexa to lift me up but it gave me massive diarrhea. i now have welbutrin that i havent filled yet. any advice on a happy pill that wont give the runs? should i give celexa another try?

We all have different pain thresholds. My hubby teases me all the time because I have such a high pain tolerance. I once dropped a 100 pound cement filled cinder block on my toe once and walked around for a day before I thought it might be a good idea to get it checked out. Gave birth to my two sons naturally with no drugs involved at all. I don't know, I just don't feel a lot of pain. I guess that helped me breeze thru these surgeries. My husband on the other hand would have litterally died I think if he had to go through these surgeries because he has ZERO tolerance for pain.

It sounds like the gas is causing you the most discomfort. And gas can be so painful. Have you tried Beano? It works differently than Gasx. It's a digestive enzyme that works on stopping the gas before it develops. I hope you can get some relief soon. Sorry I don't have any advice on the happy pills.

quote:

im not trying to be a whiner but im just so freakin sick of being

You're not a "whiner." Believe me J Pouch surgery is the roughest surgery I've ever gone through on my long list.

Can you try making a pact to yourself for your own good? Mark the 4 or 5 month mark on your calendar. And until then, try to stop freaking out too much (especially since under exam things look A-OK)!

I am at the 5 month mark and wish I had done that in the early days. Woulda saved me a lotta headache and heartache. Now that I know what I know.... Ya know?

thank you so much fq. i love what you said

Maybe you should try the antidepressant again. I don't know how many days you tried to use it but know it takes at least 2 weeks before it starts working. At 2 weeks most everything made me have diarrhea. If you try it again while eating the same you should be able to tell if it is the medication. I take citalapram, which is generic celexa and bupropion. I took the bupropion, generic welbutrin, before the surgeries and afterwards the Internist also put me on the celexa. As I understand it celexa is stronger than welbutrin and there are different doses of each. My 81 year old dad takes an antidepressant and calls it his happy pill. He is grateful they prescribed it as he had serious surgeries that he will never fully recover from.

I also think you should quit giving yourself grief about taking pain medication. If you are not in pain then wean yourself off of it but if in pain take it. We are all different and have different healing rates and pain.

I'm not saying taking pills will solve all of your problems but they may help. You might not need them very long but probably need them now. You titled this topic "ready to give up" which says to me you need help. Maybe you also need to see a mental therapist as well.

I too do not see how people go back to work 6 weeks after surgery. They are super stars IMO. Please don't compare yourself to them.

I hope you are feeling better soon.

Good support in this thread for you Tom. I can only add I have blood when the gas smacks my butt lips together like a whoppie coushin and when my BM are bigger than my butt. I told my doctor about it, he didn't seem concerned. Try Almond Milk products, they are not known to cause gas. I like Silk Almond Milk personally.

i went to see my surgeon for a flared hemorrhoid and she seemed very encouraged. i followed her advise to the t adding konsyl fiber once a day and gas-x with every meal among other things. the very first evening i was thrilled to see soft formed stool but then in never ended the entire night passing large amounts of formed stool 10 to 15 times within 3 hours. i stuck with it and had a repeat again also noticing with the formed stool i dont get the heavenly woosh of gas after a bm so now im going non stop all night rarely relieving gas. 2 months out and i feel no improvement. i know im still new but seriously people. a gas pain that doesnt expel and continues stabbing at a flared hemorrhoid is truly hell and no way to live. what is it going to take for me to get even a tiny amount of relief. ive been checked and tested for everything and have been told by virtually everyone that everything appears to be right on track and i simply have to ride it out. if i dont get relief soon i have to make a change or start taking huge doses of pain meds. i cannot cope with this discomfort and i find it hard to believe others have tolerated this because i believe there would be more desperate cries for help like mine. for those that are in my shoes and either stronger than me or tighter lipped forgive me for thinking im unique. i think jan mentioned this hemorrhoid may have been my prob all along and i agree because as it flared so did the insane discomfort and primarily on the right side where the hemorrhoid is. maybe i could endure the gas pains if not for the angry tissue it causes. i had this hemorrhoid through my uc years and would flare once in a great while. can anyone give me hope because i still believe i can have a full recovery and a bright future if i knew others have been there and made it to a happy healthy life. i still think i made the right decision but i do miss my bag on occasion. i hope someone can help me make sense of this all.

Tom,
I was going 20 times, 4 weeks out. Surgeon gave me lomidal, flagyl and florajen 3 (probiotics) and I am seeing a huge difference. I also started the Metamucil wafers. Doctor said to not drink as much water( was drinking 8 glasses a day) and start with Gatorade and cranberry juice. I hope this helps. Don't give up, it's still early! As for the gas, I read on this website to lay on stomach and it does help. Also, walk walk walk!

ive done all that but the antibiotic. maybe thats what i need???

i have some here. whats the regimen for cipro?

I am on cipro right now for 14 days , I take 1 pill (500 mg) every 12 hours. I was on it for 10 days but must not have been quite long enough, so trying it again. GOOD LUCK!!

Tom,
Don't start an antibiotic without first discussing with your GI. You do not want to take these meds if not necessary and if they are not really needed for the issues you are having.

it just seems like so many docs prescribe over the phone as a just in case and so many people get relief...

Antibiotics are normally reserved for pouch inflammation. That does not sound like your issue if everything has checked out ok with your pouch/cuff.

If your pain is hemorrhoid related why hasn't your doctor suggested prep H suppositories or calmol suppositories? Are you sure you do not have a fissure? When I did the gas would kill me when passing it, very much like you are describing.

no fissure and hem is external...

My doctor gave me antibiotics 4 weeks out because he said flagyl decreases bowl activity. It's related to the bacteria in our pouch. He didnt give it to me for inflammation. He said at this early stage, it's highly unlikely to have pouchitis. He gave me 250 mg 3 times a day for 10 days.

You should always ask your doctor before you take antibiotics. Call and ask if he agrees.

My Internist is handling my pain medication and I think that is what you need. It might not be gas pain. She understands IBD and all related issues. My surgeon gave a prescription of 30 pills, that's it and my GI has never prescribed anything but an antispasmodic. The awful pain before my surgeries was managed by Tramadol. Afterwards Norco, like Vicodin except less tylenol.

The last time I saw my surgeon he asked who was managing my pain and I told him my Internist was. Please go see your primary care doctor if your specialists don't prescribe you pain meds.

Also if you go on pain meds you might not need antibiotics. Pain meds also slow your system down so you probably won't have to take as many things to firm your stool.

P.S.
When they say it takes a year to recover they mean it. I never expected recovery to be so bad. You need to think back to a month a go and you will probably see some improvement.

When I got on this site some say it sometimes takes over a year, maybe 2-3 even. All I can say is your j-pouch is learning it's job and that takes a long time. The operation moved everything around you inside and it is all settling down into a new permanent position. I had a bad time with my bladder until it settled down again.

Do not take antibiotics without talking to your doctor. It seems that you may actually being doing a disservice to yourself because you don't wait to see how something will work long-term. A lot of medications or supplements can take a while to settle in. If you stop them before they can go through the settling in process you'll continually go back to step one and have to start over.

Given that your doctor(s?) have prescribed certain things for you, you should always ask them about adding something to the mix. You might end up creating a bigger mess if you don't.

Yes, some doctors do prescribe antibiotics over the phone but that's because they know their patient and have seen them. I can't emphasize how important it is NOT to start taking antibiotics without talking to your doctor(s). And you must tell each one what other medications or supplements you're taking as well. With antibiotic resistant infections running rampant, taking antibiotics if they're not needed will just set you up for problems.

kathy

quote:

You need to think back to a month a go and you will probably see some improvement.

actually i dont. i felt better 2 weeks out and im now 8 weeks out. i think its the hemorrhoid progressing and now thrombosing but i often question food intolerance because even when i had uc under control i could eat very few items. i do not plan on taking the antibiotics but i can tell you fiber does not appear to be my friend. things got so much worse since the doc prescribed them. i also think im hydrating wrong. i would guzzle a bottle of water to make a bm pass easy. prob 6 bottles a day. im now drinking half that in the form of broth. i think you can over hydrate as i was peeing totally clear and i think it was rushing things through regardless of imodium, fiber etc. when i had uc i always seemed worse off than everyone else so maybe my recovery will be more difficult than most but i sure hope not. im at the end of my rope people...

I think you are correct that the thrombosed hemorrhoid puts this into another category, so you really cannot compare yourself to others. Even without fresh j-pouch surgery, hemorrhoids are utter misery. So,do what you need to do to cope with that.

Jan