Hi Mandi,

Welcome to this forum, and I am sorry that you are facing numerous issues at the same time. I also have FAP and have also gone through some very distressing times. My original surgeries were at Mayo Clinic and I am surprised that they have not been able to help improve the problems you are having with your pouch. There are numerous posts concerning fissures on this forum that might be helpful to you. I did not have any fissures during the 30 years I had my j pouch, but I did have ongoing issues with frequent BM’s and anal irritation that I adjusted to the best I could to avoid getting the bag. I found that regular use of a bidet helped significantly. Ultimately, the pouch had to be removed due to recurrent high grade dysplasia in the anal cuff plus significantly weakened sphincter muscles. I opted to get a BCIR (similar to a k pouch) because I was strongly against having the bag with its quality of life issues. For me, this turned out to be an excellent choice and I now have a very good quality of life. One of these alternatives might be a good choice if you ultimately decide to have your j pouch removed.

With FAP, it is necessary to have regular scope exams (upper and lower) and you should consider having genetic testing done for yourself and your kid(s) to see it this dominant gene mutation has been passed on to them.

An alternative to Mayo Clinic is the Cleveland Clinic where they specialize in dealing with j pouch problems such as you are experiencing. My thoughts are to do everything you can to save your pouch since there is no going back once it is removed and your bottom is sewn up. It would be helpful in reducing stress if you could work fewer hours, become a part time student and get someone else to care for your father. I know what is like to burn your candle at both ends because I have done it and paid the price. Do you have some close friends who can be part of your support system and perhaps a counselor who can assist you? Please feel free to send me a PM if you have any questions or would like to talk.

Bill

Good advice to Many, Bill. Mandy - so sorry you are going through this - have had issues over the 30 years with pouch.  Yep - it was a huge part of a failed first marriage...very hard at times to work, etc. etc. - yes, isolating with not much support - however - I am surprised you are not getting more help from doctors - I know Mayo clinic is the best - but is it worth trying Cleveland Clinic?  I don't know - just throwing that out there. I know you are in a mess trying to do all these things - parenting in particular - but also the working, etc. and I honestly think you must reach out for help from some type of social services or a church or something to give you help  - you can't keep spinning these plates all at once.  If your family won't help...do not be afraid to ask for help elsewhere.  Yes, it is embarrassing, etc. - but if you are truly on your own- you really need help - practical help - now and as you work through these issues. I am so, so sorry you are going through this - there is hope...but you need some support to get through this time while you really just focus on your pouch and fixing these issues. It will never be perfect, but these are too many things at once.  Beg for help if you have to!

Thank you Bill and Angie. I really appreciate all the advice. I had a horrid experience with the Mayo and them not being very helpful. They tell me to see my PCP for any issues that it's not their problem anymore. I refuse to talk to Cleveland Clinic bc they are the ones who told me that I can't get the disease. They switched my sister's blood vial and mine around so she grew up thinking she was the one with it and she isn't. I do not trust them anymore. My doctors keep trying new meds but it doesn't work. I will have to get an appointment with them again and see if they have any new ideas.

I don't blame you if C. Clinic messed up and Mayo too.  I had this happen at a hospital in Washington D.C. - will never go back - so awful.  I am praying for you - hoping you will get some relief from doctors and some support as you have so much on your plate. I am so so sorry you are dealing with all of this - I wish I could wave a wand and make it  stop. 

You should post in the General Discussion forum regarding your pouch problems since it will get more exposure there and hopefully some helpful recommendations. I also suggest that you make a list of treatments, medications and diets that you have not tried for your condition and bring it to your next doctor’s appointment. I have found it necessary to “educate” my local doctors about my BCIR since I am their only patient with it.

I can appreciate your feelings about the bad experiences you had at Mayo and CC, having experienced them with some doctors I have seen, particularly ones who treated my late wife. However, I would not write off the entire clinic because of the actions of a few of its members. A few bad apples in the basket do not mean that all of the apples are bad. Hopefully, your local doctors will be able to successfully treat your medical problems and you will not have to seek help elsewhere. Keep us posted on how you are doing.

Great points, Bill....all of them.  Very helpful.

Thank you. I contacted my PCP yesterday and they said to speak with my mayo doctors because they don't have anything they can do.

Sorry I'm so late in replying. I see a great Doctor at Mayo in Jacksonville...........Dr. Riegert Johnson...........I find it hard to believe about bad care at Mayo, they are top notch. If you'd like message me and I'll find you an FAP Specialist at Mayo in MN via my doctor here...............he's a GURU and has saved my life more than 3 times..........

Thank you all. I am finally getting to see some doctors who know the issues at hand. I am letting go of the stress of my job and going to try to find something I can do from home that will be easier on my body. I am giving up the stress of dating and focusing on me and my daughter. In general I am just giving up.

Mandi, never, NEVER give up.  While it’s wise to adjust down on some of your activities based on your physical condition, it is so important to have some physical activities, to eat well and spend quality time with your daughter and close friends.  You can get back into dating when you feel up to it.  I speak from experience and found that it takes time and lots of patience to get through those rough times.

Mandi  - I am glad you are finally finding some doctors who know about all you have been dealing with.  I know about giving up - I had sort of a breakdown at age 45.  I quit my job, etc. - I didn't think of it as giving up - I just could not carry the load I was carrying anymore.  I know it's hard to believe - but things can get better...have been through really awful years and really good ones with the pouch.  Focus on healing physically and emotionally - get whatever resources are out there - beg if you have to!  I should have advocated for myself more- but as you know - they system does wear you down.  I agree that sometimes adjusting expectations is a good thing - it's part of letting go of "all or nothing" thinking.  I could say tons more - but know you are not alone in your suffering and that what things are like right now can change for the better.  It feels like nothing will ever get better when you are in the place you are now - but please don't give up...you can date again etc. ..later....focus on healing and your daughter and make that your # 1 priority.  If you have a bad day where you lay around and don't do much - so what?  Get out some the next day...don't beat yourself up if you can't do all the things you used to do. I've been thru times where I could not take walks or go anywhere due to similar issues ...I got through them.  I also lowered my expectations - I eat as well as I can and I try to exercise, but I don't beat myself up if I only walk a couple times a week.  Something is better than nothing.  etc.  When you are going 15 times a day, at night, in pain, etc. - how can you be expected to maintain a regular walking routine?  You can't.  So, maybe try for a couple times around the block a couple times a day....we are here for ya.  Please let us know how you are doing.  Don't give up - but do go easy on yourself  - you are not "done for" yet...it can feel that way, but you are here and doctors can help you if you beg enough!  ("advocate" enough).

Thank you for your kind words and caring thoughts. I am taking things one day at a time. Today I managed to be a chaperone for my daughter's class field trip.  I went the whole day without stopping constantly for bathroom breaks or pain. I got home and dealt with it all coming at once but I had a day with my child and her friends free from all the issues that have been plaguing me. Tonight I rest in front of the television, thinking I should do school work but knowing that if I start that stress my night will be unbearable.  

I feel free today not just because of how well the day went but also because I finally feel as if my pain may help another. I have found a person recently diagnosed with the same disease that I have. I have someone I can discuss my concerns and my own experiences with. This website and forum may be very helpful to my mind. 

This weekend I must find the motivation to do some school work since I have made the decision to skip out on work and to stay home and take care of my own health. Thank you all for your support and being on this site to give advice to the rest of us. 

So glad to hear from you - getting through a day without much pain and bathroom with your child - priceless...yes, you hold it in and then make it home.  So glad your pain issues are improving.  So glad you found someone with same illness who you can talk to in person and who "gets it" - that is priceless, too. Take it slow, keep on going - don't beat yourself into a pulp if you don't get it all done at once...I felt such URGENCY to get things all fixed at your age - post divorce, dealing with pouch, getting a masters degree, and thought I would never find a good man again who I could love and who would love me back...I wanted it to be fixed fast...and it just wasn't - but all the above did get "fixed" over time...now I'm 53 and I am struggling some with my pouch again - but I've been lazy about going to doc to try to fix it - going in next week to start all that process - dread it as I'm always afraid they will be something horribly wrong.  So far, it's always been "fixable" - that fear that things won't get better is what is hard to deal with...for any of us.  But, I have learned to accept that better now - that comes with age.  The terror of illness and suffering is not pleasant - but it is also understood that something is gonna get cha eventually (this is how it is later...when you are old)...what I am so thankful for is there were spots in time throughout life with pouch where I was in such misery I wanted it to just end....well, now my life is really good - in terms of how I get to spend my time - and I want to stay alive so I can paint, knit, read, and be with my wonderful husband.  So, I am thankful that I have come to now and WANT to be here.  Life is so mysterious.  Thanks for listening to me a bit - just needed to vent.  I so hope your situation continues to improve - knowing that would make me so happy for you - you were having an awful time of it and if things slowly improve....that is just so, so wonderful for you, your daughter, and whoever out there will one day be lucky enough to be your new mate ...that'll happen...in time. BTW - I was single 4 years in between first husband and second - maybe 5?  I didn't even date much for the first 2 years - the couple dates I went on were so awful, I just stopped....that turned out to be a good thing...I just focused on trying to be as happy on my own as I could - and of course, that's when Mr. Right finally came along.  I chose someone totally different from my first - who was a successful surgeon and anesthesiologist and cute to boot - so you can guess what was going on in that marriage!  So cliché!  Second husband is more handsome, but is also very humble, not particularly full of ambition, and teaches high school science and used to coach.  He has been the best thing ever - 20 years...loyal, loves me, and I am so, so thankful.

Angie I am so happy that you have been able to turn your life around. This morning I started feeling down on myself again. Sitting next to my sisters and their husbands who are happy together they own businesses together make my parents proud. I feel like such a disgrace with four failed marriages, health issues,  no job, and no financial stability. 

Your second marriage sounds filled with happiness. Thank you for listening to me too.

Just an awful feeling when the siblings are all doing well and you feel like the "failure" - I have learned (with aging) not to compare myself to my sister or really, anyone.  It's a futile thing to compare your life to other peoples....if they are more successful, you feel like a failure...if they are less so and suffering, you feel guilty..etc.  - my advice is to get some counseling if you can and as you heal yourself....you will find your ability to choose a suitable mate gets much better.  I went to a psychologist for a year post divorce - could I afford it - NO - but I found a way.  It really helped me with my divorce and with my health issues.  She was wonderful - truly helped me and probably was partly why I went back to school and got a Masters in counseling.  It is normal to feel blue when so many things seem "wrong" - it really is.  I've been there a couple times - wrapped up in depression so deep nothing helped.  Each time, once it got bad enough, I reached out for help and each time, I was able to finally reorder my thinking, adjust anti depressant meds, etc. and then move on and find pleasure in life again..it did not make all my "problems" go away - it made me see there was so little control I had over so many aspects of life - and it helped me to pursue things I enjoyed doing...which leads to meeting similar people - having friends, etc. Now that I am older, I enjoy doing much more things alone - I am an introvert at heart - so I read, paint, knit, etc. - but when I was young, I got out there after awhile and did all kinds of things- ran, played tennis, went to plays, etc. etc. and just forced myself to be very social.  I realize with a child this is not something that you can do with any ease...but perhaps single parents groups, etc. would be good.  I did sort of have to make myself do it - but it worked!  Over time, it worked!  That and good old Prozac back in the day.  Hang in there - you are you, you are worthy to be here...you are worthy of being loved - but as the old cliché goes, you have to really love yourself first - you may not like things about yourself, but loving yourself means you set up this "aura" that you are able to give and receive love - stable love- not the romantic love that wears off pretty fast...long term love has some romance, but it's more about finding a person with good character who wants to be in the journey of life as a partner.  That's my relationship advice for the day....hang in there.  It DID turn around and it can for you too.  Lower your expectations of some "perfect" life you thing your siblings have - and just go about doing baby steps- you'll have down days and up days....etc. etc. (all cliché - but that's why - because these notions are pretty tried and true). 

Thank you again for helping me to feel better. I have been so busy with work and school that I have been unable to make my counseling sessions and I keep forgetting to take my anti-depressants. I actually ran out and have not had an opportunity to go back and fill them. I will do that tomorrow. I have a hard time with the concept of taking a step back and focusing on my own healing. I am a very impatient person and trying so very hard to learn a bit of patience. I have been exhausted for days now and tomorrow I have to prep for a sigmoidoscopy so I will have tons of fun. I hope you all are having a wonderful weekend and enjoy the beginning of the week. Goodnight all and thank you so much for your kind thoughts and words of encouragement.

Tonight I am starting the prep for a flex sigmoidoscopy. I am starving and watching my family eat. LOL while I get to drink a nasty mixture yum yum. The prep has not started to hit me just yet but I am certainly not looking forward to the minute that it starts here soon. I am wondering if I need to get my bowels as clean for a sigmoidoscopy as I needed for the colonoscopies. 

Tomorrow I have a friend driving me and staying with me after and taking care of my child while I sleep the day away. I find myself hoping that they find cancer just so I know what I am feeling is not in my head. I do not know if these wishes are simply because I have been off my anti-depressants and mood stabilizers for a few days now and if it is effecting me or if this is something I would wish for even if I were on my meds and not feeling a complete failure. 

I spent another day passed out and unable to wake up today. I dreamt of my most recent ex-bf and when I woke I was missing him dearly. I messaged him just to see how he is doing as he was the person who was supposed to be bringing me to the doctor tomorrow. He backed out because he thinks that I was talking to other males to keep my options open when I was only talking to people who I have been talking to longer than I have talked to him and I was not interested in hurting their feelings by ditching them. I told them I was unavailable but that doesn't matter to him now. Some how even when I do what I think is right for everyone involved I am very very wrong apparently. I can not do anything right for anyone and it really hurts to keep loosing people. I am sorry I think I just need to vent a bit about so much so thank you for listening. 

Has anyone ever had issues with exhaustion to the point that even in your sleep you are too tired to fulfill the dreams? It seems weird and hard to understand but for over a week now I have been sleeping throughout the day due to inability to keep my eyes open. In my dreams I am going through the dream sequence and yet my dream self can not stay awake either. I wake up even more exhausted and fall into another sleep soon after. I am awake for only around 6 hours a day. 

So many things to speak with the doctors about. I keep trying to do research myself about these things but it seems that there is not very much information on the internet.

On the bright side even with taking these laxatives I still have not needed to go to the bathroom the entire time I have been writing this post. I have been writing for well over an hour because I keep getting distracted by the television. I do hope it cleans out nicely still. I would like the scope images to be clean and clear so there is no question about the findings.

Goodnight all and hope you all have a beautiful night!

Yes to the exhaustion..yes to thinking I tried so hard to get it right and nothing seemed to work....it took lots of therapy and learning new skills, new ways to cope, really - a new mindset about myself, men, life, etc. - it was worth it.  I did this at around age 28?  I think....and it made my life dramatically different and much better had I continued thinking in old patterns.  Your emotional/physical health have to be top priority - even if it means going to a low cost counselor once a week or something....drag yourself there if you can.  Drag yourself to doctors regarding the exhaustion - also - are you on any meds for depression?  This is an area to consider - if you already are---perhaps a new dose or a change is in order?  Those can make you sleepy - I finally accepted that they did and learned to take a nap after work every single day - an hour.  Then, I'd get back up, wash up and sort of have a second part of the day starting at about 6....making dinner, doing any work I had as a teacher, etc. etc. - as you know, in many countries this siesta is built in to the culture - there is nothing wrong with it.  The American work ethic is crazed and it works great for people in great health who are young and highly energetic - it does not work for people with chronic illness....you have to have breaks.  I hope you find friends who can take your child for an afternoon so you can nap and then you take the friend's child ...etc. - you need a community - easier said than done, I know.  Hang in there...as for the sadness about the men - been there, done that....it's a process to not make men the center of your life...or expecting one to make you happy.  It is hard work - and as I said earlier - once I got to this point...then I attracted a good guy.  Hang in there - there is hope for you - you are young and things can and do get better.

Nothing worst than butt burn

hygine is so important, I use wet ones everytime, dry with tissue and always apply Calmoseptine.

you can get it at any medical supply place. Cvs will order it for you

i could not live without this.