They told me it was cured?

I too have a bleeding cuff. I knew I'd have problems with it even before I had surgery but I don't have pain with it where I did have constant pain with pancolitis. It does suck they leave it in but it is my understanding they do that because that is where all the nerves are to feel if you have to go to the bathroom. I'm not sure I'd want to not have a cuff and not be able to tell if I had to "go". Is this one of those lesser of two evils? Anyway, meds don't work on my UC so I just deal with it. Not fun. I guess there's that risk of cancer in the cuff too. Not sure if you got cancer there what would happen to the j pouch? Anyway, Im glad you talked about urgent care VS ER! I always struggle with when to go, and which one to go to. It isn't clear and you don't want to take up space in ER if someone is there for more serious things... but pretty sure urgent care can't handle it either. It is frustrating. Of course, everytime I've gone to ER they tell me I shouldve come in 2 weeks earlier so I guess I wait until I'm really in trouble.... I wait because I don't want to be harrassed about wasting the ER's time! HA. So there you have it.

Ugh......have you thought about getting the cuff stripped?

Sue

I'm glad you don't have pain Jennifer! I have more pain when flaring but always have pain caused by adhesions and/or IPS and/or to be determined. That's why I think jumping back to and ileo would still leave me in pain.

I'm blowing steam, I was told to take it until it felt gone and to taper. I kept taking it as I was going back and forth so much between here and dad's. I realize it probably was gone and has flared again because of the stress. I need to pay even MORE attention to this all consuming condition. To top all things off I was dumb and ate a few mushrooms in my food last night and did not chew chew chew enough. I have a thread on here where I rant about mushrooms so I should know better!

I haven't discussed getting my cuff striped yet Sue, but it is in the back of my mind along with dumping the pouch. My first application for social security disability benefits was not only recently approved the letter more or less states they believe my disabilities are permanent. I have other health autoimmune health problems and am in counseling so I'm not surprised I was approved.

I keep trying and thinking I am going to get better. My goal this summer was to golf at least once, I've lowered my expectations to the driving range now. I set myself up for failure by not accepting reality and learning a new normal. I just won't accept what it apparently is. I am forcing myself to get out of the house more. Some days it takes everything I can muster up to get dressed and out the door and always involves a xanex. I've said it before, I use to be the life of the party and now I won't even go to the party!

Thanks for your encouragement ladies. I'm going to the Chiropractor, Walgreens and to get my hair cut the first time in 6-7 months today. I love my hairdresser, we are friends, I use to do the salon's and her personal income taxes plus I was their business consultant. She has been doing my hair for 27 years and we've been there for each other during ups and downs, like marriage, children and everyday problems. She has quit calling me as I always make excuses for not going anywhere. I should be happy to be going to my appointment and am now dreading leaving the house. I'm in too much pain,but I am going. I had a pedicure yesterday and felt better so am expecting a good afternoon and some laughs.

sorry! I didn't realize you were in pain down there. I never had pain from lower UC.. I started with proctitis and never had pain then either. That really sucks! I guess you have fibro pain too. I was DX with fibro but not sure Im ready to believe that one for myself. I think it is more arthritis. Anyway I was wondering if you could offer any words of advice re: hernia surgery. I have a consult tomorrow with a new surgeon. Any questions I should ask?

I don't have any words of wisdom Paulette. I just hope you feel better soon and can get this resolved. I guess this could happen to any of us since they have to leave that 2cm of colon? Didn't one of the members here have his cuff stripped and it was successful? Forgive my memory...I can't remember who...I just remember reading it.

I most definately am having flares with that remaining rectal cuff too toughenough, even in my situation(unused Jpouch). It doesn't impact me the same way as it is for you because of the seperate issue nature of it now. It still wastes up to an hour of my day though of sitting on the toilet emptying blood/mucous/fluid, and then there's the 'trying not to leak stuff out' moments, just like the old UC days.... which keep reminding me the Jpouch(for me at least) was never even close to a cure.

I can only hope whatever you have done gets you to a better place, so you can enjoy life again. Including getting out to golf a lot more for example if that's something you love to do.

Take care Tough,

Ad

Thanks everybody,

Last week I took dad to his surgery follow-up appointments and back. My wonderful husband drove me the 3 hours to and from dad's home. I drove dad the 70 miles back and forth for his appointments. It took so much out of me I've been in bed or on the couch since then.

I had an anxiety/panic attack checking dad back into the skilled nursing facility Thursday. I took a xanex and laid down on the other bed in dad's room until I felt better. Now I've given him more to worry about

Every time I think I'm done with a cuffitis flare and skip a day or two of the Canasa - bam it's back again. If all I need to do is take that suppository the rest of my life I'm fine with it but I still have all of the other pain and problems.....

At least I was able to take care of my dad and to be with him for all of his medical appointments. I am grateful for that.

Thanks again for your concern and advice

toughenough,

I am so sorry you have to go through all this pain. That has to suck especically since you have so many other problems incl fibromylgia.

Yet through it all, I see a postive person who is always willing to help others and I admire you and respect you for that.

The only thing I can and will do for you is to include you in my prayers. I don't know if this will make you feel better but a couple of people from my church when I was really going through a lot of pain and suffering told me that God must really love you a lot to have you carry a Cross with His Cross. My response was; "I know Jesus loves me a lot, but I wish He didn't love me that much. Its no wonder that when life gives many more heartaches, that Jesus has so few friends."

In any event, God loves you very much, more then any person on the planet.

Rocco

Rocco,
Thank you for your kind words and your prayers. I am praying for you too.

I keep telling myself that I have not gone through all of this to quit now. I'm still here for a reason.

Thanks again,
Paulette

Dear Paulette,

I didn't know that was your name. Its such a beautiful name and to me, I look at that name as someone who is a kind and a gentle person, a complete opposite of your name of toughenough.

I suppose you have your reasons using toughenough because with our illness, we have to be strong and tough to endure all of this.

I am home sick today from work. Saw my Uriologist this past Monday and I have 7 Kidney Stones, one is 2.2 Centimeters big. I did not have any pain until yesterday and tolerated as best I could, but last evening, the pain becamse so acute, I did not sleep very well.

I am trying to make arrangements with my doctor to have Shock Wave procedure so it can be blasted out but it may be another two weeks before I can have this procedure as he only does this every other Thursday and also, I have to find a friend who would be willing to take time off to drive me to and from the doctor's office to have this taken care of as I will be sedated.

For obvious reasons, I will not ask my wife. I mean, when I had Kidney Cancer, my neighbor told me she inquired to how I was feeling after my surgery and my wife told her that "My surgery went well, but she was disappointed in the outcome." My wife wants my death in the worst way.

You know, even though I have to physically suffer like this, I feel sorry for my wife because she is so pathetic and filled with hate. She would be a good match with you know who, the person on this site that is filled with hate.

Rocket

I am glad I found this thread! I have been having nothing but problems since my takedown 4/30/2012. I, too, believe I have UC again with what is left. I finally went to my GI and she did an exam that found blood. So now, I have to go for a sigmoid to take a look at the j pouch, etc. I am in worse pain than the disease. I just got off the picc line for nutrition (last Wed. since June). I also, have pain from my waist down. It is in my hips, knees and ankles. Hard for me to walk at first and then when I get moving I am better. I told my GI that this absolutely SUC__ when sobbing to her. I am not a crier however, I seem to be having breakdowns, now. I see how people can be hooked on some type of pain management. I don't take anything but tylenol or advil.

I went for a bike ride for the first time yesterday but didn't last long maybe 15 minutes. Trying to work through the pain and build up stamina. I feel like I am 90 all the time. Use to be the energizer bunny and not any more.

I am finding it difficult to embrace this new life I lead! Tyring to keep the faith! Still waiting to be healthy!

You wonder at times if it is all in the head but they keep finding things wrong.

Roberta
UC 2007
ileostomy formed j pouch 2/29/2012
takedown 4/30/2012

RLC,

This website has been a haven for me too.

Don't hold back your emotions. I and many others have gotten to the point of crying over the pain and misery. But that is OK. If you need to cry, please do so.

Remember, your disease does not define who you are. People who do not have this kind of illness cannot possibly understand what we are going through. But most of us realize that we are strong and tough to endure this.

Your line of "Tryiing to Keep the Faith" struck home with me and you are absolutely correct. Our faith is something that no one can take from us unless we choose to give it away. God loves you very much and ask HIM to help you carry your cross. Give it all to HIM.

All humans have to go through some tough times. I have a J-Pouch since 1984, had Kidney Cancer in 2009, and in about 1/2 hour, I have to go an have a procedure done because one of my Kidney Stones (I currently have 7) is 2.2 centimeters big and it has to be blasted out. No way a man like me can pass that through.

But my attitiude is I will give this all up to Jesus because He loves me that much.

Pease to you.

Rocco

RLC,

I was a type A+ person before and energizer bunny was used to describe me too.

No we are not making any of this up in our heads. Or heads might be perceiving pain the wrong way which makes our pain worse than it is.

Good for you and getting on your bike so soon. 15 minutes is not a failure it is a start. Keep listening to your body and rest when it tells you to. Maybe tomorrow you can ride 20 minutes. Just stay close to home. Your neighbors might gt sick of seeing you go around the block but that's their problem.

Please take pain medication. It was explained to me if you take it only for pain and not to get high as well you will not get addicted. (My former now retired doctor told me that when I was afraid I was going to get addicted. She said I was not on a large dose and she had patients that were on similar "short term" drugs long term.)

You might be having a fibro flair concurrently with your pouch problems. If you take pain medication it will not take away the fibro pain but it will cut your abdominal pain. I always have dull abdominal pain that is manageable. If I didn't take the medication I couldn't function.

I'm over beating myself up for being "weak". I need mental and physical health medications, therapy and many medical appointments and tests. I could not tough this out on my own.

We have not gone through all we have for no purpose.

Take care,

pms (yes my initials are PMS rocket, lol)

Roco,

I hope your procedure was successful and you are feeling better. It's like you are saying, I've been through cancer and this stone is not going to defeat me!

Please post how you are doing.

God Bess you and your Doctor!

toughenough,

I am fine, thank you for asking. I have to monitor for the next 24 hrs and drink to make sure the plumbing works. Have to go back for another X-Ray and two weeks and follow up with the doctor.

Also, I will have to do the same thing on my left Kidney because there are large stones there too. For me, as often as I get sick, my attitude is "Whatever."

It took awhile for me to wake up, but this is the norm for me. The recovery nurse asked if I would like some pretzals, water or juice and I said find but please also bring me a glass of Chianti, I love red wine. Shucks, they had none to give me. But I made her laugh.

She also said I would be loopy and I had to tell her that I am loopy and goofy anyway so no one will no the difference.

Rocco

I said I am find when I meant fine. Even with no alcohol, I still can't spell right.
Rocket

Roco,
I'm glad it went well. Your kidneys seem to enjoy acting up like their neighbor, colon.

thoughenough,

Thanks. I think my colon and my kidney are best friends.

Hello Rocket and toughenough - Well, I had a sigmoidoscopy on Monday and found I am in a UC flair...go figure! I thought it might be a fissure but no a UC flare. I am doing two suppositories a day, right now and was told I need to go Oct. 9th for a barium enema, again. This is coming from my GI doctor. I have not been in touch with my surgeon as of yet. Thanks for encouraging words.

Rocket I hope you are healing and your plumbing is working. Do they know why you are producing so many kidney stones?

toughenough my surgeon originally put me on Canasa back a few months ago for the fissure. Got off of that after a week or so. Now, it is a UC flare...I am wondering if that is what it's been all along. I am on steroidal suppositories, now.

All I can say for now is stay tune...to all of us!

Roberta

My doctor told me that I produce so many because I cannot absorb water and consequently every thing goes right through me. My Nutrionist wants me on a high-protein diet while my Urilogist told me I need to be on a low-protien diet.

I guess I am in a catch 22 and in all honesty, I would rather have stones then go through pouchiits. It is what it is and these are the cards God dealt me so I have to just do the best I can. I refuse to let kidney stones get in my head so I just make jokes about it.

Rocket