i cant do this anymore. please help me.

Sorry you are having trouble. All bad things pass, so just hang in there. All of us on this board have been through a lot.

Call a friend, family member, or even go to the ER to seek professional counseling. Just letting out all the frustration to someone helps.

Cipro can bind things up considerably! I know first hand. Here is some advice.

1) Take a ducolex and drink a cup of prune juice with each dose of Cipro.
2) Buy a fleet enema. Go out now if you can. Empty the solution and fill it with warm water. Lay on your side as shown on the photo on the box and hold it in for 1-2 minutes. As soon as you get the "urge", go and empty your pouch in the toilet. This provides me with so much relief when constipated from the Cipro. Don't do it too much as you do not want your body to get too used to it. Maybe 1 or 2 times a day while on Cipro.
3) Finally, I found that Augmentin is effective for pouchitis, but does not constipate me. You may want to consider that in the future.

i did the dulcolax and prune juice and im loose. i can only assume its my sphincter holding in back. i can only go in drips. im so sore and tired and feel like sleeping in the tub and just going as the urge hits. im so lost and my doc would not agree that cipro is the problem but it started 2 days after starting it with no other changes...

I say try to tap water enema. Call your on-call doctor if you are not sure.

My doc recently suggested it and it works great to clear things out temporarily. Think about it your pouch is full of very thick stool. You put fluid in the pouch via the enema and it mixes with the very thick stool to make it easy to pass. Then you go the bathroom with immediate relief.

Cipro definitely makes things very thick for me. See if they can switch you to Augmentin. For me, Augmentin does not thicken things but works for my pouchitis.

Curious to see what other people have for advice.

Try aiming for a high protien-low carb diet while constipated, it gives you nothing to bulk up and therefore runs more easily through you...Stick to chicken and fish, dairy if you can or eggs...no rice, white flour, bananas or applesauce (not carrots either)...you can eat mashed or pureed veggies like green beans but no potatoes...
Hope that this can help
Sharon

i cant do the cipro and hc suppositories anymore. how can i eliminate these problems naturally? can i starve the pouchitis bacteria out by going zero carb? in the past i could control my colitis to a degree doing this.

If you have to pick one for now please treat your cuffitis. You have to wait to get a new antibiotic for sure. Is Flagyl constipating? Cuffitis can get really nasty and didn't he/she say you had a mild case of pouchitis?

I think we all relate to how you are feeling, at least I have had many times when I don't think I can take all of my health problems any more. It helps me to think of my husband, children, grandsons and my dad. I just keep fighting for a better quality of life.

When I had cuffitis and a c-diff infection together with my fibromyalgia it was the worst - things have gotten better.

I don't know what doctor you are going to but if they are not cooperating please find one that listens and empathizes with your problems. You don't need a lecture you need help!

they called it moderate pouchitis the other day. ive noticed something today. i started drinking a protein shake that has no carbs or fats and was good til i switched to ensure which has carbs and fats. almost instantly i am struggling to get a deep breath like trying to get a yawn that wont come which has been a common thing for years. could carbs and or fats cause this symptom?

Wiggles-
Are you *certain* there's anything much in there? You may have a sensation of fullness but nothing to pass. Possible?

There's another poucher on this board, chasingtime, who had his surgery around the same time that you had yours, and coincidentally in Florida too. He also seems to be having very similar problems to yours. You might want to PM him and swap stories. You might be able to help each other.

Sue

It seems that he's from New York not Florida and I can't seem to contact him

Yes, he's from NY but had his surgery in FLA, perhaps by the same surgeon?

Sue

I was to the point of not wanting to live anymore. I went to an end ileo and had my j-pouch disconnected. I got my life back and am healthier then I have been in 25 years. an end ileo is a very small price to pay to get rid of the constant pain I was in...give it some thought... :-)

I was thinking the same thing Sue -- Wiggles and Tom/Chasingtime sound very similar, in fact almost exact. I just hope Wiggles takes some of the great advice given to him.

quote:

Wiggles-
Are you *certain* there's anything much in there? You may have a sensation of fullness but nothing to pass. Possible?

i think this is very likely at least part of my problem. when im keeping things liquid i still have problems straining every now and then and an hour later easy as can be. i get the urge to go and struggle and end up regretting it. i have to try and work this angle and see what happens.

wiggles, pouchitis can give you a sensation of having to empty even if there is nothing in your pouch. This could be what you are experiencing and therefore you need to try to stick with the meds to take care of the symptoms. I know cipro can cause really bad constipation. I suggested before to try sipping prune juice - just a few sips every half hour or so; you can try drinking a shot glass full. That is a good way to measure.

quote:

wiggles, pouchitis can give you a sensation of having to empty even if there is nothing in your pouch.

Yes, it is sort of like the dry heaves, except you have the dry craps and either dribbles or nothing come out despite a sensation of heavy urgency. I am all too familiar with this sensation which fortunately I have not experienced lately.

It's very dangerous to overreact to this situation by taking bowel slowers......will make the problem worse.

Cipro is somewhat binding but as suggested by spooky natural laxatives will counteract this situation - prune juice being a good one. Most antibiotics are constipating (I find xifaxin less so than the others), but these effects can be counteracted. It is a lot of experimentation and trial and error to find the combination that works best.

thank you guys. i did try the prune juice but i ended up with a raw sore tongue. im going to try grape juice for a while and maybe some foods that move things through.

ct, i agree about the bowel slowers. i know its tempting when things get rough but i never want to be on them again. i just wish the antibiotics didnt bind us up because otherwise i feel very good. ive been keeping it liquid by basically living on ensure til my cipro is done. i hope the pouchitis is not chronic after my first round but we shall see...

I thought the protein shakes were better for you than the ensure so why are you one the ensure? I must have missed something.

the protein shakes had very little calories and im down 35 lbs. are the ensure bad for us?

Ensure is fine. I think she was inquiring about your prior statement that you had difficulty breathing when you drank Ensure, making it not so so good for YOU, not people in general. Typically, Ensure is very well tolerated and I've never heard of reactions like you mentioned.

Protein drinks are usually consumed by people trying to lose weight or as an added supplement to a regular diet, NOT as a complete meal replacement. That is because they are nutritionally unbalanced.

Jan

I suggest drinking the Boost VHC drinks. they have 530 calories in an 8 oz box. you can get them as a medicl supply through Edgepark

im not sure i could handle the 30 grams of fat in the vhc though. does it bother your gut?

I also suggest Boost. I never really did like the texture of Ensure. Boost is definitely more palatable, like a chocolate shake. You can get it with extra calories and/or extra protein, too.

wiggles,
You need to either try someones suggestions from here or not. Everything someone suggests you shoot down. It's a waste of everyone's time who is trying to help you. It will either help or it won't. If it doesn't it will not kill you.

We are here to support you. Take our support or not but quit wining about every suggestion. It's not like we are telling you to drink bleach or something.

wiggles,

Remember everyone is different in so far as diet goes so you are going to need a chart or a daily log of what you eat and what the reactions are.

Many on this site can drink milk. I can't, so ensure will not work for me. However, I use Rice Milk. There is also Soy Milk but I can't have that either because I develop Kindney Stones.

I cannot have a lot of fiber to help bind me up and my GI has me on a low residue diet. So a lot of things I have are Gluten Free.

You need to just stop for a second and slow down. Its going to take work on your part and when you shop or go to a restaurant be sure you look at the ingrediants in the grocery store and ask the waiter how is the food made as in what ingrediants are in it.

As bad as our situation is at times, and it is tough to deal with, I know because I have many moments too, there are many great suggestions that have come through for you. Jan Dollar should be taken seriously because she knows what she is talking about and has given countless advice to many people on this board.

Stress also plays a key factor and the more you stress out about this, the worse off it will be. Just as a warning, a couple of people give negative comments so please ignore those as they help no one.

But you need to take some kind of action. Health Food stores have many protein shakes that put on weight so you may want to look at those in your area.

Rocket

te marie, can you digest 30 grams of fat? i wish i could but its not even and option for me because i have pancreatitis. can you guys be nicer to me? im struggling post takedown physically and emotionally and were all different. what works for you doesnt mean its going to work for me and it doesnt mean i havent already tried it knowing it wont work. ive learned so much from this site and ive used lots of advice like imodium early on grape juice, probiotics etc. ive used advice on what foods to eat and avoid. if im not wanted here just say so and ill leave but this constant scolding is really hard to take. you can reply with your well meant intentions but im telling you it hurts me so let me know and ill go elsewhere...

wiggles,

I think I can speak for everyone on this, but none of us what you to leave or go elsewhere.

I'm sorry if I offended you that was not my intent. I don't know a lot about your history so I don't have a lot of background in what you have tried, what worked or what hasn't worked.

We've all been where you are and have had many struggles. I have had bouts of depression just from the illness but I have other major things in my life that puts an enormous amount of stress that I won't get into.

I have cried many times because a major surgery like this plays havoc on your emotional well being. And its all right to cry. That stupid thing where men don't or are not supposed to cry is not even normal. Where not machines.

In regards to Probioctics, if your on meds like Cipro and/or Flagyl, then they do not work as well. I have yearly bouts of pouchitis so I don't take probioctics if I'm on meds.

But it will take time so be patient with yourself. I have had my pouch since 1994 which is considered a long time, and wish I did it sooner.

On the outside world, people who have not had to experience such major surgery, have no empathy either, at least in my life, other then my parents and siblings.

Rocket

no rocket. i wasnt offended by you at all in fact i liked your post. im on cipro now. should i stop taking my pb 8 and boulardii? i thought i read to take them during cipro etc...

I think you really need to try antidepressants again. If you're already taking them, then perhaps you should see about increasing the dosage. If you're not taking them, I'd think they would really help, especially if you have IPS.

You seem to be over-thinking and dwelling a little too much and I believe that's what you need help with. I think people here have been nice to you. If you look at your post(s) statistics you'll see a lot of activity. But I also think it gets frustrating for people when they offer advice after you've asked for it and then you dismiss it. Because your plumbing is new, it may take a while for each new introduction of food/beverage/medication to settle in. For many of us, new introductions don't feel perfect when we first try them and giving them a chance before dismissing is advisable. For example - just because Rocket mentioned that probiotics don't work as well when taking antibiotics is no reason to stop taking the probiotics. As has been mentioned many times, taking probiotics and antibiotics together can work if one spaces the two apart by several hours. I recall that people have mentioned this to you previously.

Please remember, this is only a support board and not a medical board. People here can give you advise on what has worked for THEM but you're going to have to figure out what works best for you.

But again, I think the thing that will be the very most helpful for you is to get your anxiety and/or depression under control.

kathy

wiggles,

Thanks. I wasn't sure, so thanks for clarifying that up for me. I assumed that since I was the last post, I thought I said something wrong.

Check with your doctor. I just know that the probioctics are not as effective if you are on those kinds of meds. Some take probioctics anyway, but they wait a few hours before they take it.

A lot of the stuff you can google too. Some probioctics give you lots of gas, but again, it does not affect everyone the same way.

That is the most frustrating part of this damn disease is there is no set diet of what works for ore person works for all. Or what foods to eat and what not to eat.

I will add that you need to stay away from soda and not drink through a straw because it creats more gas.

Rocket

thanks you guys...

Regarding Ensure, it is fine if you only have lactose intolerance, as it is lactose free. But, if you have a milk allergy, it is a no go, because it does contain milk protein.

Try not to be too sensitive, as it is frustrating for us too. We cannot read your mind and do not know all your problems. This is the first we've heard about pancreatitis, and fat digestion is as individual as anything else. Plus, you did seem to contradict yourself about your ability to tolerate Ensure. We are not trying to hurt your feelings or chase you away. Most of us are not medical professionals, just regular people with regular shortcomings, so best to cut us some slack.

Like Kathy said, we can only tell you what was useful for us. We can't guarantee it will be useful for you.

Jan

i am overly sensitive i agree and i will work on it but i promise i would never dismiss any advice you guys have to offer. if it seems i am its because ive already been there and i will do better at explaining that in the future. i like most of you guys and if you are all saying it i believe you. i do have to ask though. isnt 30 grams of fat in a meal rough on any pouch?

also, i think i misspoke about the ensure. ive tried so many shakes but the ensure is working well for me.

Sure, 30gms of fat in one meal is a lot, but I don't think you can generalize that it is too much for a pouch. It is less than what is in a egg, sausage, and cheese biscuit, and I can say that I have eaten one on more than one occasion since I got my pouch, and it caused me no particular problems other than adding to my waistline. Unfortunately, for me at least, I tolerate fat just fine.

A suggestion to perhaps avoid frustration for you and us, when you ask for suggestions, it might help to preface it with, "This is what I've tried so far that does not work." And, maybe tell us in advance what your limitations are. That way, we won't waste our time and yours with useless suggestions.

But, when it comes right down to it, we all pretty much come to our happy place through trial and error. Unfortunately, it seems that you have more unusual, if not bizarre, reactions than anyone else (a raw tongue from prune juice and breathing difficulty from supplement drinks, for example). It doesn't mean they didn't happen to you, just that it is not possible for us to anticipate them. Again, it just reinforces the notion of trial and error.

The main thing is to find what gets you through this hump until enough healing has occurred for you to move on.

Good luck!

Jan

sorry for frustrating you guys. it wasnt my intention...

No need to apologize. Misunderstandings are common even among people who know each other well. Online communication is an imperfect method, but it brings a lot of potential sources of support together. One of these days the tables will turn and you will be trying to help someone new to the process.

Jan

wiggles,

I don't get on much anymore, but tried to catch up on your posts. The beginning of my recovery from takedown was very slow with lots of bumps along the way. I had cuffitis, abscesses, fissures and pouchitis. Still today I suffer from chronic pouchitis and frequent abscesses. I can say it does get better, it just takes time.

I noticed for me the hc suppositories constipated me. I also had a lot of problems passing stool with both pouchitis and cuffitis because of the inflammation. With cuffitis my cuff was so inflammed and swollen nothing would pass through. With pouchitis I get awful spasms which will tighten things up and not allow stool to pass through. Hot baths help along with getting up and walking around, then head back to the bathroom. When I get the spasms I know now not to continue to try to push. It's futile.

I've had lots of trial and error with different foods & medications. Some things work sometimes, some things not at all, and sometimes you will find the key. I know now when the pouchitis is bad I cannot eat gluten or anything with lactose. Once the flare has subsided I can go back to eating all the pizza I want.

You are still a newbie to the j-pouch. It took me over a year to figure everything out. I saw a therapist who specialized in chronic disease to help me through the tough times, and rejoice with me in the good times. It may help to add this as well.

Good luck!

thank you karbear. i want to be happy and start feeling better so badly but clearly i have a hard time communicating properly on here but i need you guys and im willing to do what it takes.

I can still remember those hopeless days and nights. It's very hard when day after day you are experiencing discomfort and pain. It's hard to look just one day ahead let alone weeks, months, or even a year.

My only suggestion is just because you have tried something once doesn't mean it isn't going to work for you in a couple of weeks. Keep revisiting some of the great tips you find on this site. Some may start to work after some time. Maybe, maybe not.

My best tip is to take hot baths. It helps reduce the pain and relax the muscles. I still need to take a hot bath once a day to keep myself from getting butt burn and spasms.