I can't suggest a magic fix but such a heartfelt and desperate message; all the more so at this time of the year, can't go un-answered.

I'm sure popping back online to see replies to your post, even if just the one, will hopefully stop you from feeling so low and isolated.

Hopefully, the more replies you receive, even if just to say Hi or Hang in There, may make a difference and raise your spirits.

I'm certain many forum members, due to our illness, condition, procedures and life in general have all experienced similar to yourself but when reaching out, especially on a web forum, it's difficult to know what to say or how to reply.

I suggest you share your thoughts with your Doctor.

You're not alone and someone who doesn't even know you, never even met you and is more than likely on the other side of the world has spared a moment of their time to acknowledge your post, then hopefully, it will encourage other forum members to do the same.

Hang in there.

My heart goes out to you, I am  so very sorry that you are having to deal with all these issues at once.

have you tried Ilex for the burn?  

I wish there was a magic fix for all of us, but please don't give up!  Antidepressants take time to work. Something that helps me is physical activity. I know, last thing you feel like doing.  But even  if it's 10 minutes of walking 3x a day it's mood boosting! 

My thought s and prayers are with you

Well stated Strange. We --our support group – – are a family  of sorts  that is here to help each other. I too have been depressed in the past over my health. I certainly never had the deaths that you experienced,  but depression doesn't differentiate between large tragedies  and small dramas. Having poor health can be very debilitating mentally. The best thing I ever did was volunteer to help people less fortunate than I. I went straight to the homeless shelter and started serving dinners and socializing with the guests.    It came to be my most favorite day of the week  and turned my depression around. 

 Good luck and keep us posted on your progress. Janet 

I feel so bad for you.  Have you discussed pelvic floor dysfunction with your doctors?  That is what ultimately pushed me into surgery to divert from using my j-pouch to a permanent ileostomy.  I didn't have my j-pouch removed.  I doubt this is all psychological.  Please quit blaming yourself for this. It's normal to get depressed when we have chronic illnesses and/or pain.  Plus you have been grieving as well.  

Hopefully you will be seeing your doctor (s) soon.  If you have been on the antidepressant long enough that it should be working then maybe the prescribing doctor might want to increase the dosage or try a different kind.  

One of my escapes is watching too much television.  It's a good thing that AmazonPrime and Netflix don't bill for usage.  I over use the subscriptions.  

So sorry you have such a terrible time. 

Antidepressants are definitely good in your situation, but honestly, therapy has as good a rate of helping depression as pills. Perhaps look for a good therapist in your area. Sometimes, talking to an impartial person and just airing out the dirty laundry is good and cleansing. 

And not all antidepressants work for everyone, so remember that, too, if things are not getting better. 

Chronic pain chips away at the stone.  Don't blame yourself. 

Thanks to all of you who have responded. Your thoughtfulness in getting back to me has been very comforting 

so good that you can find some comfort with the responses.  i agree with the comments and especially that an impartial person for talk therapy can be very helpful.  also, the holiday season is an especially tough time to deal with losses such as you have had.  i'm so sorry for what you are going through.  j

Mema, you have been through so much, I'm so sorry for your loses.  Depression on top of health issues is very understanding.  If you don't feel like your antidression meds are working, speak to your doctor.  They might be helping and you don't realize it, but you may need to add to it.  I take such a cocktail for major depression and anixity.  And occasionally it needs to be tweeked.  As for something to do, do you like dogs?  I'm a pet sitter and it worked out great for me.  I'm home, it's my son who is the patient, I get my dog fix and make a few dollars.  If you are a dog lover, having a dog around is the best medicine even if it's not yours.  It would give you come company and something to do, just a thought.  Private message me if you are interested in the dog thing.  I love it, it's great for my son and it's a win-win for our family.  Just a thought.  Feel better, you are not alone.  All the best wishes.

I just heard from my doctor and he thinks that an ileosomy might be the best thing for me at this time. Talk about depression and anxiety. 

i just got a k pouch to replace my j, which never worked properly.  the k isn't for everybody but so far it is working for me.  go to the k pouch korner for lots and lots of info on it.  i went to cleveland clinic, which was out of state for me but it worked out well.  just a thought.  j

do you apply a diaper rash cream of choice ( I prefer A&D ointment but many other suggestions here) after each bowel movement? that will help a tremendous amount with the butt burn.

Remicade dosing might also need tweaking. not sure how long you've been on it. for some its an immediate response, for me it took until 5 infusions and then eventually I had to shorten intervals etc.

this is a tough time of year with all the losses you've experienced in particular. keep plugging along, maybe find places you can volunteer your time that might help you occupy your mind and time.

just reread your post.  sounds like you might have a couple of problems that are treatable, and will ease some of your discomfort and frustration.  

the raw, bleeding skin might be a fungal infection.  go to a gi nurse for diagnosis and treatment.  once under control you can apply unit-fungal ointments, some are otc and others a script.  they work

the incontinence could be pouchitis, for which antibiotics help.  or it could be pelvic floor disorder, for which a pelvic floor PT can help.  or it could be a combination of both.  where do you live?  i might be able to suggest somebody.   jh

I think that the raw skin is from leakage when I'm sleeping. I always feel it when it starts to burn but have no idea when it happens, it's the burning that wakes me up.

I'm on Cipro but then again, I quite frequently have leaking and it's when I don't have pouchitis....I just went on a tranquilizer to try to calm myself down.

I live in Massachusetts.

leaking stool can irritate the skin.  happened to me and the nurse helped me treat it.  eventually i could treat on my own by using anti-fungal meds, as i mentioned.

pelvic floor PTs at B&W are excellent and one who is on her own is patricia jenkins, north of boston--she's excellent.  might be something for you to look into.  helped me immensely   will need script from your gi doc.  good luck, jh

As Megan has already suggested, I too find ilex Protectant Paste really effective to treat and protect damaged skin; I can't recommend it enough.

Free sample sachets are availbke from manufacturers and distributers and in the UK, it's available on NHS Prescription.

During the time when I had my temp ileostomy, the skin around my Stoma was red raw, oozing and excruciatingly painful; I was in so much pain and discomfort I was beginning to believe I'd made a huge mistake by opting for a J pouch.

I tried every product, paste, powder and concoction that was available, I was desperate and nothing would ease my pain and discomfort, that is, until I applied the ilex paste, which was recommended by a member from this very forum.

Once I applied the ilex there was instant relief and within 3 to 4 days my skin had healed.

I continued to apply the paste around my stoma to protect the skin until takedown.

I still use ilex now to treat butt burn, although I rarely suffer from such an ailment now.  I apply it more as a preventative measure, only for a few days should I feel a slight itch or burning sensation.

If the skin of the affected area is broken, bleeding or oozing, the ilex paste will require smearing over quite heavily, which, once applied can feel quite sticky and messy.

Although, technically for EXTERNAL USE, by applying a little ilex paste just to the inside of the anal sphincter, using the tip of your finger, the paste can also act as plug, which helps prevent leakage; dont'l worry, you'll still be able to empty your pouch.

It's worth the sticky messy discomfort for a few days while the skin heals under the paste; eventually you can apply less and less, either until it's no longer required or continue to use it as and when required or like myself, as a preventative measure.

I hope you're feeling a little better.

My husband uses pads to help with the leakage at night (like the ultrathin pads for periods..with wings /overnight).  Hang in there Mema.  

Mema

I am so sorry you have had so many horrible things happened to you.  You have had so much to deal with on top of your J Pouch issues.   

I can only offer my condolence and a few tips.  Have you tried sits baths with the water as warm as you can stand it?  They helped immensely for me.  Be careful and don't get the water too hot.  Also, warm baths with Epsom salts work well for me. 

Everyone has different options for creams and ointments.  A&D ointment worked the best for me, and it is more reasonably priced than some of the other alternatives.  The purchase of a bidet is also something that really helps very much.  I purchased one at home depot for around $80.00 and it was very easy to install.  I also have a portable bidet I take with me when I am away from home.  It's little more than a spray bottle with a curved nozzle.  I also purchased that at home depot.

Praying for you, and hoping you get better soon. 

I'm so sorry for all you been thru.

I also had a bad year, in a different way, and I was depressed and the anxiety was the worse. For a while I went on klopion to help me relax and regroup. By far that was the best thing that helped get me thru. 

Sorry for you as well but so happy that you are doing better. I really believe that depression and anxiety is my problem as well. I think that it's me that's making me feel worse and hope that I will  be able to overcome all of this with a little help. 

Mema 1 posted:

I just heard from my doctor and he thinks that an ileosomy might be the best thing for me at this time. Talk about depression and anxiety. 

Hello. I hope you are doing better by the time you read this. 

Don't be afraid of the illeostmy. 

Don't let the anxiety get to you! 

I was afraid and full of anxiety.   I put it off for a long time. 

But I had my pouch removed two and a half months ago. 

I thought it was the end of the world. 

I didn't have the things happen like you did which is terrible.  My problems were all surrounding my pouch. 

I too was at a point where I couldn't even touch it to wipe... Or even go empty it.  It was like lava coming out and I feel I could have screamed at the top of my lungs. 

The last two weeks before my removal I was resorting to wearing a diaper because I knew I wouldn't make it through the night.  Before that I could get away with wearing a pad. 

Now that I have had mine removed and have my illeostmy all that has gone away.  No pain.. No urgency... No worries about where a bathroom is.  

Now I am not saying this is right for you.  But it was the right thing to do for me.  

I have to get used to wearing a bag and changing it and all that.  But it by far better than what I was dealing with. 

So what I am saying is if this is where you are headed don't be afraid.  I was scared to death of it. 

But it turned out to be the best thing I did for myself. 

I wish you the best.  You are in good company.  

Keep us updated.  And I really do hope things improve for you. 

It's tough... But you are strong.  Be strong.  We are all here for you. 

Richard. 

I agree with people above who suggest klonopin an trying to find a good anti depressant that works for you.  I take both and they do help.  You have been through too much all at once - which is oddly in life how it always seems to be.  I will pray for you and know you are not alone.  I hope you have other family or support system.  Reach out and ask for help.  My neighbor lost her son at age 25 this year - and she has health issues.  I did not know her well - but she reached out and I've been helping ever since.  It's healing to help someone when I feel physically bad a lot of the time and she says I've helped her a lot - nothing can fix her situation - it's so tragic.  But, she got thru Christmas.  I truly hope you get some meds and are not afraid to ask for help - during one period of my life, I checked myself in to the hospital - thought I was losing my mind.  I wasn't - but losses all at once combined with the pouch issues just overwhelmed me.  I stayed 4 days - I don't know that it helped me that much - but that is not really the point.  The point was, I said, "Uncle" - I can't do this.  I was in a safe place and with others who were hurting.  I was really glad to get out of there. I went to a night group of women after that for about a month or so - then, I was able to carry on and while life was still a mess, I could cope - one day at a time.  Get help if you need it - it's nothing to be ashamed of.  We are all connected and must ask for help and when we can, give help.  To me, that's pretty much why we are here - we're all in the same boat - facing loss, physical illness, money problems, whatever - eventually something gets you if you live long enough.  We need each other and we are told constantly to "pull ourselves up by our bootstraps" and "back in the day, we didn't ask for help - we just carried on" - well, that's fine.  I would bet back in the day they did ask their neighbors for help. after my last health crisis,  I quit trying to think my life was going to be like it was  - and after a grieving process over many things, I came to accept it as it is. It took me a LONG time....but I got here and I truly do have happy or content days now.  I also agree with the person above who said - glad for Netflix.  I stay home a lot, and I love to knit, read, paint, and watch TV.  I am no longer ashamed of Netflix - I used to not tell anyone I had it!  To heck with what anyone thinks - people out there will understand.  Those who don't just haven't been through anything yet or just don't have the capacity for empathy.

Mema, I understand what you are saying about anxiety and depression. We can't just will ourselves out of being depressed and anxious. If I  could I would have done so a long time ago. It isn't our fault we got an life-threatening disease. It isn't our fault the treatments failed and we needed to get rid of our colons.  It isn't our fault our j-pouches are failing us. We tried every diet we thought might help plus medications, naturalpaths, chiropractors, exercise, acupuncture so on. None of it worked. It wasn't our fault. 

We can't do it all alone. My elderly father didn't understand why a year after I started therapy that I wasn't depression and anxiety free. He understands now. All I can do is the best that I can do. I am not a failure. My body is riddled by health problems. There isn't magic formula to "fix" me. But I  am going to keep striving for improvement.

The older I get the bigger my problems are. That's my life..

Thank you all for your heartfelt responses. I still haven't made any decisions as to what I'm planning to do but will try to keep you updated as to what's happening. There is really no words to express my gratitude to all of you. 

 My thoughts and prayers are with you. I feel really low at the moment and unable to cope with my symptoms. You try to explain to your loved ones how these affect you but end up feeling like you are whining. Reading other people's posts and knowing there are others going through the same hard time you are going through and understand you, really does help. 

Hey Dudge -

Yes, lots of lows through the years - lots of highs and good times. I agree that one of the hardest things is that you really can't talk about it much - it does come off as complaining.  I've had mine 30 years.  It's gotten harder the last 7 or so years.  More low times these past years - ya know - just a general tiredness of it all.  I do not want to give up on living - but I'd by lying if I didn't at times think - this is not much of a life.  I then beat myself up for feeling down about it...as in, "you think you've got it bad - try being in a wheelchair" or whatever is worse and there are so many worse things.  I think the holidays are sort of a low time for many people anyway.

I was just thinking, "what is it you want?"  - and I realized what it is:  I want my vitality and youth back.  I can't have it back.  So, I sort of compare this to getting old at a younger age - I imagine many people with chronic health issues go through this feeling.  So, we are not alone.  And, there is a measure of "get after it" that comes into play.  If I really want to feel better, I have to take more action to do so - more exercise (even if leakage), eating more carefully, getting involved in other things so I don't dwell on this, etc. etc. - I've done it before - pulled myself out of the depths; but so many times...I hope I can do it again!  I'm sorry for all you and others are going through. I truly does help me to be on this forum...because only you guys can understand what this is like.  And, because people can't see it - we look "normal" - and because it's not something you can talk about (friends with back pain for ex. - much easier to talk about than I poop 10 times a day)...although I know those with back pain are also suffering.  It's just so hard to feel alone with the constant pooping.  I will say, when I was younger, I did much better with this.  Really well overall for about 23 years. I wish all of you peace and pray we will find a way to feel better. If we were all in one neighborhood, we could go on the walks or runs, exercise, etc. together - and motivate each other.  I really have thought about that.  I don't think a local sewer system could handle a neighborhood full of pouchers, though  Ya gotta laugh.  My husband uses one TP roll a week max, I use 8 or so.  Thanks for listening and I hope you feel better mentally soon. 

(((hugs)))