thanks jan. if its anything like the past ten years it will relax and i will pay closer attention to keep it as rare as its been. ive noticed something however. other than ridding myself of that vile fiber supplement reducing my fluid intake and changing from water to broth has brought about a calming affect. much less frequency, gas and pain. gonna stick with it and see if it works...
Whatever works is the correct thing to do.
That is why you keep hearing us say that there is no rule book, no recipe, no plan, that works for all, or even the same person all the time.
Jan
That is why you keep hearing us say that there is no rule book, no recipe, no plan, that works for all, or even the same person all the time.
Jan
Just to throw out one more thing to worry about. I've had a C-diff bacterial infection with my colon and have had it with my j-pouch. One of the causes is certain antibiotics, such as Cipro. I don't want to scare you but antibiotics can be dangerous. Plus you can get a yeast infection in your j-pouch.
Are you taking probiotics? I know this is a lot I'm just phobic about antibiotics as I've had yeast problems several times since my surgeries.
Are you taking probiotics? I know this is a lot I'm just phobic about antibiotics as I've had yeast problems several times since my surgeries.
im not on a probiotic because at this stage they make me gassy and thats going in the wrong direction. i will probably start making my yogurt again soon. yesterday i cut the fiber supplement, reduced my fluid intake and changed my water to broth. its the first time since i lost my colon ive actually craved fluids and the first time my pee is not totally clear. from this my hemorrhoid has shrunk significantly and the stabbing pains that had me running to the can have all but gone away. oh yeah, its the first night i slept well in months.
Tom, I'm happy to hear the good news about the hemmie getting a little better. It's great that you got a bit of relief for at least a night. I hope you're not risking too much with the dehydration. (Just keep tabs on that.) I really hope things continue getting better for you. Keep us posted.
It sounds like you are doing better and I hope it continues!!
YAY Tom!!
Often times, I think half of our ability to cope is just knowing what we are dealing with. When we are struggling blind, it is like being up a creek without a paddle, without a boat, and without a life jacket!
Even knowing something is terrible, as long as you know what your enemy is, somehow he is less fierce and invincible.
Hope things just keep getting better Tom.
Jan
Even knowing something is terrible, as long as you know what your enemy is, somehow he is less fierce and invincible.
Hope things just keep getting better Tom.
Jan
thank you so much guys. im watching dehydration and had another good day. maybe ill sleep again the hemi pain comes and goes but its a bit better each day. sometimes i forget its there then it aches but i think im on the upswing. youre right jan and also knowing others have been there and recovered helps a lot. you guys are the best!!!
the hemi pain comes and goes but its a bit better each day. sometimes i forget its there then it aches but i think im on the upswing. youre right jan and also knowing others have been there and recovered helps a lot. you guys are the best!!!
I know every hour seems like an eternity when you have chronic pain. You feel like you are in a trench and the hole keeps getting deeper. There is just no joy in your life and you miss your old self. Hopefully you are turning a corner and if you still have rough spots stay strong. This surgery tests our courage, faith, tolerance, pain threshold and also our loved ones patience at times.
Tom, I'm so glad to hear you are doing a bit better. When I had my thrombosed hemmie, it was incredibly painful. I had to take pain meds it was so bad. Once they went away (it took several weeks to feel all better) it was so much better. I hope that all this pain and trouble is from the hemmnie and in a week you will be doing great! A good night's sleep also helps so much!
disney, did yours go down slowly like mine. mine has done this about once a year for years but i never had one with a j-pouch. tonight i had a bit of trouble after such a goon night last night. i felt more like i needed to strain tonight but didnt. i guess i will reluctantly add a tiny bit of fiber back in but it made me so active and gassy before.
Yes, it took a long time,although the first week was the worst. I did go to a hemmie specialist and he gave me some wonderful cream that really helped. Then I went to my surgeon and she said very sternly, throw that out!! It had stuff that numbs things down there so it can cause incontinence. It also helped bring the swelling down, so it healed a lot quicker than it would have. It was a cream that had lots of different ingredients that did lots of different things to help it go down. Can you at least use prep H?
yes and thats helping along with warm baths. i added oatmeal in the morning to make sure i dont get stopped up like last night but the konsyl psyllium powder was way to much. more than doubled my output and got me so bloated plus i bulked up so much it seemed i couldnt get the gas to get by it so never got my grand finally woosh of air afterwards...
I know my rear end has really been the worst part of the j-pouch problems. I wish us all happy and healthy tushes
holly, do you have hemorrhoids or other issues in the butt region?
since j-pouch surgery the hemmroids are back. On the antibiotics it gives me a break from going to the bathroom so much and aggravating them. I have to be careful what I eat too so I don't get the dreaded butt burn. I have a bidet and it has really helped alot. I have taken the advice of others on this site and stopped using the creams and all and started using baby powder only. So far so good. But worried after the cipro is over with things will start back up again. I can deal with the frequent BM's just not the butt pain.
i thought hemorrhoids subside after a bit with proper care. are you saying they are chronic? will i suffer like this forever? id be crushed if that were the case...
Most people don't, things settle down. I am not sure exactly what is going on with me but hopefully this round of antibiotics will clear me up. I am sure you will be fine. Things are still so new with you.
ok so i had a couple good nights since i dumped all traces of fiber but then started feeling stopped up a bit so as not to start straining again this morning i had a small cup of baby food oatmeal cereal like the gerber single grain http://www.gerber.com/AllStage..._cereal_oatmeal.aspx tonight i am in hell with non stop trips to the can with increase stool gas and pain on the hemorrhoid side. this is ridiculous. 8 weeks out and i cant handle even a trace of fiber. i would blame the thrombosed hemorrhoid but fiber was actually prescribed for it by my doc. what gives people? do i continue with a strict fiber free diet indefinitely as it seems to be the only thing that gives me peace except for feeling a bit stopped up which i will take any day over cramping racing and going all night with a throbbing butt. please continue to give me hope because i keep thinking failure and i dont want to go there just 8 weeks out. im so so tired of all of this and cannot continue to hear the same whining words come out of my mouth night after night. i can only imagine the torture my wife is going through. god bless her. the hemorrhoid thrombosed 6 days ago and is shrinking daily. please tell me its normal for it to still hurt from this increase stool and gas pressure. im wishing now that she lanced it...
I would say go with whatever seems to work for now. You can always reintroduce foods later, after your new digestive tract has had a chance to settle down. It sounds like it's been through quite a bit of trauma, so I would try to keep it calm/mellow for a month or two before you start bringing troublesome foods back in.
What kind of diet does that leave you with?
Also - have you already experimented with the difference between soluble and insoluble fibers? Soluble is supposed soothing while insoluble is considered roughage. Oatmeal has both in it.
(Did you already say that Metamucil didn't do you any good?)
What kind of diet does that leave you with?
Also - have you already experimented with the difference between soluble and insoluble fibers? Soluble is supposed soothing while insoluble is considered roughage. Oatmeal has both in it.
(Did you already say that Metamucil didn't do you any good?)
it leaves me with white rice products and hard cheeses because my pouch doesnt like sugar either so pudding and ice creams are out. i went so long without and i was so looking forward to eating food again. there doesnt seem to be too many foods with just soluble fiber but ill keep searching but come to think of it even the 100% soluble fiber supplements still give me hell. im starting to fear im just allergic to most foods and thats why my uc was never under control even while in remission. docs kept saying drink boost eat this or that. it was a big fat no to all of that. i believe i may have been put here as an experiment in human suffering 
btw, im still not giving up but dear god have mercy on me...
btw, im still not giving up but dear god have mercy on me...
Chasingtime-
I have been in your shoes. There is still hope. I took forever to recover from my takedown. Everyone who was in my "takedown class" seemed to be doing so much better than me while I was still going 20-30x/day at the two month mark. I felt very frustrated. I had a few set backs like cuffitis and two stints with abscesses. I have also been diagnosed now with chronic pouchitis. I just want to tell you with trial and error and a little time things will get better. I didn't see any improvement at all until 3 months out. Then I saw another improvement at 6 months. I didn't feel like a normal person until 2 years out. Every person is different, and some of us recover slower than others.
I have been in your shoes. There is still hope. I took forever to recover from my takedown. Everyone who was in my "takedown class" seemed to be doing so much better than me while I was still going 20-30x/day at the two month mark. I felt very frustrated. I had a few set backs like cuffitis and two stints with abscesses. I have also been diagnosed now with chronic pouchitis. I just want to tell you with trial and error and a little time things will get better. I didn't see any improvement at all until 3 months out. Then I saw another improvement at 6 months. I didn't feel like a normal person until 2 years out. Every person is different, and some of us recover slower than others.
quote:it leaves me with white rice products and hard cheeses
That's not much to go on. No meats or proteins? Soy? I know some people can't handle soy at all, but I've always been able to digest it just fine.
Here is something I came across that sounds like it *might* be helpful to you at this stage if you haven't looked into it already: Absorb Plus. It supposedly contains a ton of nutrients, but most of it is absorbed before it would hit your J-pouch, so it produces hardly any stool. Don't know how it would do on your gas issues, but it seems like it's worth a try? Most of them are sweetened with Fructose, but they have an unsweetened version if you're worried about the sugar. There are a lot of different types of these drinks geared toward IBD patients out there; this is just one example. It might help you get some of the nutrition you'd be missing in such a limited diet.
quote:i went so long without and i was so looking forward to eating food again.
Were you able to eat what you wanted before your takedown, when you had a loop ileostomy? I'm eating pretty much everything I want with my loop ileo (except whole veggies & whole grains to avoid blockages) and gaining a lot of weight because of it. I know I'll be restricted again after takedown, but I'm at least appreciative of this short period where I've been able to eat freely and without fear.
chasing time
sorry about your problems,i had my takedown in july 2012,not thrilled with lack of info by both my colon and rectal surgeon and gastroenterologist,presently i have been placed on quest ran packets of powder to try and slow done b/ms which are around 18-22,i will be seekg dr shen at the see in vela clinic in 03/2013.Has anyone used questern and did it work hope all get better and Happy THANKSGIVING PAULN
sorry about your problems,i had my takedown in july 2012,not thrilled with lack of info by both my colon and rectal surgeon and gastroenterologist,presently i have been placed on quest ran packets of powder to try and slow done b/ms which are around 18-22,i will be seekg dr shen at the see in vela clinic in 03/2013.Has anyone used questern and did it work hope all get better and Happy THANKSGIVING PAULN
quote:That's not much to go on. No meats or proteins? Soy? I know some people can't handle soy at all, but I've always been able to digest it just fine.
cheese is protein.
yes i was able to eat more foods. thanks for the absorb plus tip. ill look into it.quote:Were you able to eat what you wanted before your takedown, when you had a loop ileostomy? I'm eating pretty much everything I want with my loop ileo (except whole veggies & whole grains to avoid blockages) and gaining a lot of weight because of it. I know I'll be restricted again after takedown, but I'm at least appreciative of this short period where I've been able to eat freely and without fear.
when im eating almost zero fiber or sugar im only going about 6-8 time a day which usually is from early evening to 2am but that is better than going til 4am last month. the last few nights when i limit my fiber im sleeping from 1 or 2am to 5 or 6am so that improvement. it seems obvious to me that my new system is just not ready for fiber or sugar...quote:chasing time
sorry about your problems,i had my takedown in july 2012,not thrilled with lack of info by both my colon and rectal surgeon and gastroenterologist,presently i have been placed on quest ran packets of powder to try and slow done b/ms which are around 18-22,i will be seekg dr shen at the see in vela clinic in 03/2013.Has anyone used questern and did it work hope all get better and Happy THANKSGIVING PAULN
I was thinking of you last night. I ate a big dinner and my hemmie was bothering me. I forgot to tell you to get those cosmetic rounds (right by the cotton balls--your wife should know). Soak them in witch hazel and store them in a baggie. After wiping, put it on the hemmie. It will sooth, help with itching and help with swelling. It really helps a lot. I can actually tell it has gone down after using. Hope your Thanksgiving was okay.
FYI - Witch Hazel is inexpensive and good idea. I discovered it has many other uses, like on your face so you know it will be good for your skin. I know Walgreens has it and it is one of the main ingredients in Prep H wipes that cost a fortune. It's like $5-6 for a big bottle.
I know, and those Tucks wipes are insanely expensive and that's what they are...basically just witch hazel.
Hi Chasingtime
I had my take down in July and like you the gas is incredible. Who knew that it could cause so much pain. When I was first diagnosed with UC 4 years ago I met a wonderful ER nurse who told me about a book called Breaking the Vicious cycle by Elaine Gottshall(I think I spelled that right!). When I read this book it made sense to me. It talks about how certain foods, especially carbs react and effect our digestive system. At that point in time I was at my wits end and figured I would try anything. I can honestly say it changed my life. My UC symptoms were drastically reduced. Unfortunately I was bleeding so profusely that surgery was the only option for me and I am very happy with the decision to have it. When I had the initial surgery for the ileostomy I had lost so much weight and was so sick that I started to eat my old foods to gain some weight so that I would be healthy for my takedown. Now 5 months after my take down and still eating the wrong foods and the gas pain , like you, just brutal I am going to go back on the diet that is suggested in the book. Even tonight I had eggs with cheese and no gas! I have the added disadvantage of having celiac disease so it is hard to find food that I can eat now but I do notice a difference when I am on this diet. I hope this helps. If you want more info, there is a website Breaking the vicious cycle that will give you all the info you need.
Hang in there, there are others in the same boat. Thank goodness for this site and all the support.
I had my take down in July and like you the gas is incredible. Who knew that it could cause so much pain. When I was first diagnosed with UC 4 years ago I met a wonderful ER nurse who told me about a book called Breaking the Vicious cycle by Elaine Gottshall(I think I spelled that right!). When I read this book it made sense to me. It talks about how certain foods, especially carbs react and effect our digestive system. At that point in time I was at my wits end and figured I would try anything. I can honestly say it changed my life. My UC symptoms were drastically reduced. Unfortunately I was bleeding so profusely that surgery was the only option for me and I am very happy with the decision to have it. When I had the initial surgery for the ileostomy I had lost so much weight and was so sick that I started to eat my old foods to gain some weight so that I would be healthy for my takedown. Now 5 months after my take down and still eating the wrong foods and the gas pain , like you, just brutal I am going to go back on the diet that is suggested in the book. Even tonight I had eggs with cheese and no gas! I have the added disadvantage of having celiac disease so it is hard to find food that I can eat now but I do notice a difference when I am on this diet. I hope this helps. If you want more info, there is a website Breaking the vicious cycle that will give you all the info you need.
Hang in there, there are others in the same boat. Thank goodness for this site and all the support.
FYI,
Dr. Oz did 2 exercises, with 3 ladies, for getting the gas out on his TV show Tuesday 11/27/12. I bet it is on the show's website. One was almost exactly what was recommended to me on this site. I'd suggest anyone with gas pains to look the show up as they were demonstrating the exercises.
Dr. Oz did 2 exercises, with 3 ladies, for getting the gas out on his TV show Tuesday 11/27/12. I bet it is on the show's website. One was almost exactly what was recommended to me on this site. I'd suggest anyone with gas pains to look the show up as they were demonstrating the exercises.