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After almost three years after surgery still having problems,have to go to the bathroom all the time some times 6-7 time a day talked to my dotor and he gave this medacation called ic cholestyramine that use to slow it down , but it make me consapated. I try to take less or more to try to control it but I can't seem to get it right . I feel worst now then when I had crohn's I wish I never had the surgery. is anyone having this same problem I can't be the only one

 Reply posted for mc440.

I know how you feel.  I have had my j-pouch for 8 1/2 years and now for the past two years I have been miserable.  I have cronic diarriah that I can't get rid of and my Doctor has ran out of options for me.  I have tried several different antibodies and it works for a short period of time and then stops working.  Lomitol makes me too tired and sleepy so I can't funtion during the day.  Alot of days I feel like I have UC again.  It feels like I always need to have a BM , I could be in the bathroom all day and night.  But I hold it and go about 10 times a day.  I've been taking VSL#3DS for a while which is suppose to help and immodium I drink Citcucil twice a day .  I'm always hungry but everything I eat goes through me right away. I'm on a very low fiber diet and try to eat small meals.  So Im out of options, I just get depressed and wish I never had the surgery.  Sorry to be such a downer, I just dont have anything good to say about the j-pouch surgery at this time.  I was OK for about 4 years and felt normal and then I moved and my entire life changed and my marriage is falling apart so I'm stressed out, which all of you know does not help our condition.   Any other suggestions of how to get diarriarh to slow down?

 Reply posted for ZooZooB.

Amazing!!  You and I are in the same boat, although we both feel like

we are sinking. Maybe between the two of us we can come up with some

answers.  I have been doing some research of my own because of my

discomfort, and believe that part of the problem was solved by realizing

that with such a small  part of illiem left that bile acids were not getting

absorbed in the same way that B-12 can not be absorbed. I  asked

my Doctor to put me on the sme thing you are on and it did help soak

up some acids that were not absorbed.  The only other thing

I can think of that also helped is stay with lowfat foods which create less

bile and for me no dairy products especially cheese.  I am still researching

to figure out the rest gas & bloating are a big problem for me along with

fatique.  Thanks for listening please share with me anything you

think may be helpful and never say never try to stay positive I

promise things will get better.  I am unable to have any more surgeries

because of the little bit I have left and I am determined to figure this

out, like you said it's mechanical, it can be worked with. Take

care and hopefully I will here from you soon. I ve been praying for

answers and maybe God has led me here. Maybe he will send us

a life raft (ya never know)

 Reply posted for princess.

A valid question. You should know that i do not believe that my doctors should always have the answers,  they are simply better qualified to assist me in making my decisions regarding my health. When i was diagnosed and had my first of many surgeries i was advised NOT to have children.  Too much disease and scar tissue ...etc.  After vehimantly informing my doctors that i was going to have children (God willing) no matter what and that i intended to begin as soon as i was  healed one of the reasons given to deter me was that i may not be realistically thinking of the children i wanted....my life expectancy was brought up so i turned this  around on my physicians and demanded that in the future i will be able to make better informed decisions if i am given realistic expectations. If they told me i had only a few years to live i probably would NOT have had children....but 45 years sounded like just enuf and i was very optimistic as to developing treatments.  I am an extremely practical woman and i am not very dependant on my doctors for anything more than the job i pay them to do....diagnose, advise treatments and aid in the administration of those treatments. A WARNING TO ALL WHO READ THIS......most physicians are NOT willing to be so frank with thier patients as it can be dangerous to the patient.  I was very close and comfortable with my caregivers and they were confident of my mental status.  If these two things are not in sync then you cannot expect your doctors to advise you on such matters.  BTW..they happen to have been very accurate so far even with so very many advancements in treatments over the past decades.  This does not discourage me.. I have 4 healthy and brilliant children, a strong marriage of 22 going on 23 yrs and as i look back to reflect....i still look forward. My life hasnt been perfect......but i have made the most of what i could.  

 Reply posted for Lauriejean.

Hi  I also unerwent  (9) surgerys crazy. I have had most of my ilium removed so the water diarea is a side effect  and loseing so much bowel.

I take lomotal and codien to slow things down plus started cimzia I use to be in the powder room (sounds nicer) all morniing could not leave the house, then when i ate it was going through me with in 45 min i found small meals through out the day work better for me like a baby every 2-3 hours. I too lost my job and have been on ssd. I have one question why would the doc tell you your life will be shorted due to the chrons no one ever told me that. write soon.

Best wishes.

princess

 Reply posted for ZooZooB.

I agree with you on the not waiting on the Lord to swoop down to help my flare-ups dear.  Thats what my meds, surgeries and dietary restrictions are for.  You mentioned "normal".  I hate to be the one to break it to you but you are comparing your normal to those who dont have the disease i think.  This IS normal.  For me its not just 6-7 a day..its 12-20.  Working on my 9th surgery next week to give me just a few more years(i'm 39).  But i have gradually worked my way to these "goals" if you will......in the meantime i have given birth to and raised 4 extordinary children....assisted(its a partnership) in a 22 year marriage...still looking forward to 23 years, had a short but driven career and looked to God only for the "peaceful" meditative stress removing tranquility for my life.  If you dont want to pray for your tranquility you can always relax to eddy murphy's RAW.....a good laugh never caused a flare-up to MY knowlege. A short life but a good one ....i'm quite saticefied here...so far. Good things can be accomplished in even the darkest of long-standing hardships.  As for difficulty after surgery?.......i'm afraid your doctor may not have comunicated to you properly the reality of why surgery is always the LAST option for anyone.  Please trust me when i say a positive outlook will help...combined with acurate knowlege of your illness and strict adherence to the best medical options you have available to you.  Wishing you well.

 Reply posted for joybarr.

I had the the same problem you have thats why I had surgery it took me 4 mouths to be back to normal you do have some pain and are very uncomfortable but you do get better .I have never heard of cimzia I just stayed  on my same meds

 Reply posted for wayneowens.

Well, if believing in the lord helps you, then fine. Yet, that's not the answer for most of us. I truly believe I will just never, ever feel "normal," and that "normal," for me is having diarrhea six or seven times a day, and that a good day is when I have diarrhea three times in the morning. I think that facing the illness head on, rather than hoping the "lord" is going to swoop down and intervene will probably do more good in the long run.

 Reply posted for mc440.

I totally identify w/ you. I was going to come on and post the same thing. I had surgery in February 08, April 04 and way back in 1980s. I have very little of my ileum left, almost all gone. So my doc thinks it's the bile salt diarrhea. I take two packets of cholestyramine a day, and I still go to the bathroom up to 10 times on a bad day. Haven't had a solid crap since surgery, though the surgery did solve the internal bleeding I had. Now my bloodwork shows no active crohn's, so my doc and I assume this is just a mechanical problem. I also take symax (beladonna type drug) to slow things down and I've been on codeine for three years now for diarrhea. It used to work, but doesn't anymore. So, I feel for you, but wish there was some kind of solution...

 Reply posted for mc440.

I was diagnosed with severe Crohn's Disease in August of 2008.  Unfortunately, it has gone undetected for a year or more.  Since August, I have been on Asacol and Prednisone.  For which neither medications helped.  I have an obstruction, stricture, and a fisstula.  I am scheduled for my first surgery next week.  After surgery I will be on "Cimzia" an new medication which is the "grandchild drug of remicade".  What can I expect after surgery?  Will the pain and some of the symptoms go away?  How long will it take to recover from surgery? Have you had Cimzia? I appreciate your assistance.  JB

 Reply posted for mc440.

I had surgery in '86, small bowel resection, and experienced what you are. Then I developed another stricture in '92. I am scheduled for surgery in 2 weeks to remove it. One thing that is different now compared to the first time is I am taking medication and it REALLY helps with the crohns disease symptoms.  If you are not taking meds to control the disease it WILL come back. Good luck and keep praying!

 Reply posted for mc440.

I had my first surgrey  in nov. 05   then in dec. 07  an then april 08  an yes its been rough since the first one. I thought it would get better but I  dont know now. Its so hard to work when i spend alot of time in the restroom. My boss really understands and care about me. He told me he would rather have 20% of me than a 100% of someone else. I dont know if things will ever get better, I know they want be like normal again. All we can do now is pray an put our trust in the hands of the Lord. I believe hes going to come thru for us all one day.