I will not go into detail on my pouch experience.

It's in here on this site. Already

I was at the same place you are. Difference is it was going to kill me and I didn't care.

But I had it removed after two years of pure hell and from that day of removal everything turned around.

Now an end ileo is not for everyone. But it was for me.

It took all that pain  and suffering away. Period.

Long story short. I've had it a little ove five years now and had absolutely no regrets.

I hope you get help. Get help.  I know where you are at.  And there is a fix!

It  takes a huge toll on you body and mental state.  You cannot keep going through it.

Blockages are pure hell.

Richard.

Hi

I understand you hating pain.  I have been dealing with my pouch for 35 years and I know the pain that we can go through but yours is horrific. Please check my message below and tell me if this helps.

I will try to make a suggestion, stay away from meat.  Try bone broth for a little while.  if your pain settles down then you know it's a matter of what you are eating.

Good luck Steven!!

When it comes to trying different things to eat and such I reached a point if I didn't do the removal I'd have passed from it.

I tried alot of different things in a two year period that didn't work. I just kept going downhill.

I was also working full time during this.

I was down to 128 pounds and a walking skeleton.

My mind was mush. We (I) fight the obvious until you can't. The bag is the "obvious".  I didn't want it even being rolled in for removal surgery.

But it was the smartest and best thing I could have done. No one wants it.  But I will say that in my experience it works perfectly.  And I should have done it sooner.

Time is limited. As for trying this or that diet. Because if it doesn't work your just further down the road of no return.

I didn't have the luxery of time anymore.  I wouldn't be here had I not had my removal. It was that serious.

It sucks going through it. But it can be fixed.  You may not like my answer but an end ileo is a fix.

Richard.

Your story is very sad and horrible.  I am sorry this is happening to you.  I would set up a meeting with your surgeon and set a date (a line in the sand if you will), where you go with a permanent ileostomy.  A time frame to work with could be key

I am sorry for everything, you do not deserve this! Please do not kill yourself, do not let this beat you! You are stronger than this. If your surgeon is not giving you what you want, i would switch surgeons, they are suppose to help us.

I've heard of these contractions and people went in anti anxiety pills that cured them.look up Emily Parris on youtube a one year post takedown and she talks of them and being put on anti anxiety pills fixed it.go to the six minute mark on her one year jpouch video she talks of the same as you.goodluck.

@Former Member posted:

I've heard of these contractions and people went in anti anxiety pills that cured them.look up Emily Parris on youtube a one year post takedown and she talks of them and being put on anti anxiety pills fixed it.go to the six minute mark on her one year jpouch video she talks of the same as you.goodluck.

So true! I have told other people about that as well! Soo cool that you posted that here

As far as the depression, which is 100% understandable, I would seek help from a psychiatrist.  I did, and I went on Paxil, an antidepressant, and it helped my mental state immensely.  I became more hopeful.  I was still very physically sick when I started the Paxil, but my mental outlook just got better.  It was really remarkable.  See if your primary care doctor can recommend at psychiatrist.  I am obviously no doctor, but see if your primary care doctor thinks it makes sense.  What you are going through is absolute hell, and anyone would feel hopeless, but help is around the corner, and a few months from now you could feel great!  Let us know how things go.

thank you everyone for your kind words and support i don't even know what to say, im so tried right now haven't had any real sleep this past week , ive had a lot of sleepiness nights i feel my body has had enough, my surgeon does not want to do a take down of the j pouch, because before when i had an ilo i had so much depression, i feel stuck in a corner because either a ilo or a j pouch hasn't worked out for me,

i knew the j pouch wasn't going to be  perfect but i had no idea it was this extreme I wish the Lord would have mercy on me for I am sinner i used to have a drug problem im now 2 years clean and for that i am very proud of my last relapsed was when  my wife passed away in 2018 she was there for me with everything, if she was here she would takeb care of me ive been locked up in my room for over 2 years i cant even leave my room  because of the pain, my poor son James has lost years of time with his father, he is always worried for me, he has seen me being taken off to the hospital so many times, i know life isn't fair i get it and I understand but these problems are getting old, if its not fire in my rectum it is painful contractions i fee like the burning pain is fighting over the pain from contractions as if its a sport , who is going win causing the most pain.  and a lot of times ill have both at the same time that when i really start thinking ive got to stop this pain ive got to do something, the feeling of emergency to get back on the toilet is horrible ive been on the toilet about 20 times within 8 hours. i wouldn't wish this on my worst enemy. I just don't know  anymore my hopium has run dry

Thanks again everyone for the support it is a relief knowing there are voices who want to help and may god bless your hearts and souls.

Have you tried teaming up with a psychiatrist, who could maybe support you through this horrible time?  Is this something you wish to do.  When you suffered from depression before did you treat it?

i had a psychiatrist before and it did not help put me on a bunch of meds that just made me sleepy and unstable, thankful today i woke up and i havent had one contraction I feel really good today, i did watch the Emily Parris video and what it sounds like is exactly my problem so I took down the medication she took to cure the issue I see my surgeon tomorrow, these contractions come and go, when they did a scope they found no problems with my pouch, these contraction started after my j pouch filled up and i couldn't empty i had to go to the ER and they dilated me and emptied my pouch ever since then I've got these contractions every 2 or 3 times a month and last over a week its so weird because i didn't have contraction in the beginning just the blockages at my stoma site

  When I have no problems my pouch works good and i feel no pain when i use the bathroom I can stop and go, i normally spend 10/15 mins on the toilet.

Thanks again for all your help so far so god today this is such a loving community and i am so thankful and feel blessed.

Promise that you will NOT kill yourself - that is a permanent solution to a temporary problem. A lot of us have been where you are (maybe not in every exact way), but a lot of us have been through hell and back (or stayed in hell for a while) with this disease and subsequent surgery, so as much as you want to, you can't give up. Is there another surgeon you could go to? Yours sounds awful. If there isn't one in your network, could you afford at least one visit, out-of-pocket, to one of the well-known colorectal surgeons? It seems that you may need a permanent ileostomy, but there might be other options if you're able to hook up with a good med GI, as well as surgeon. Another suggestion is (again, if you have the funds, or your family can help you out,) to travel to the Mayo Clinic in Rochester, MN. They're known for they're excellent diagnosticians - they almost always get to the bottom of something, esp if you haven't had luck with other doctors or medical centers.

Hang in there and good luck!!

yeah I kind of spoke to soon today, a few hours after I wrote my reply, the burning discharge came back on top of the evil mean contractions so instead of just the one problem I ended up with both of them, i see my surgeon tomorrow, and my Surgeon is awesome i love her so much, its the NP who let me suffer for almost a year, while i was in phoenix(i live in NY now) every ER visit due to UC they provided me something for pain at least 2 weeks and im telling ya, that pain was nothing compared to this pain but every pain is different, i have message after message explaining to the NP that I am SUFERING and have severe TRAMA from being in so much pain all she did was say keep me updated or played message tag, the NP  works for my surgeon so when I called I asked them to have my surgeon call me NOT the NP, I explained what's going and she right away sent over a pain med script and as much as I HATE taking them, right now for me its the only way to get passed just one more day, I really think Doctors and Nurse under-rate the pain we feel its so bad it is torture, I've seen people with way less pain they have no issues getting help, I really hope the medication from Emily Parris works because to be honest i just don't wanna be on any pills at all

As for killing myself the only time i wanna kill myself is when i feel backed in to a corner and the pain feels like its killing anyways, before I got the J pouch i did watch Emily Parris channel and a few others i was aware of the challenge's but not on this level im dealing with now, i enjoy feeling normal when my pouch isnt acting up but when it is i want it out as I said I get 1 week per month and the remaining 3 weeks of hell, and also to answer your question about finding a new surgeon it wont happen because im so far in to this with my surgeon no one would want to take me, my surgeon made the j pouch she knows how it was installed, i do trust her, these problems do happen she is just the sweetest lady i gave her a hug my last operation and i can just feel how much she cares about me. shes just as disappointed as I am she wants to see the pouch work once and for all.

Anyways thank you Kath for your enlightening words makes me feel better that I'm not in this fight alone. I just ask the question all the time who came up with the j pouch and why have it if there is so many problems with it

Hope you feel better hon! Keep us updated

This can be a very difficult journey, for sure.  You have definitely been through a lot and I hope things begin to improve for you soon.  I can relate to being on TPN.  I was on it for a little over 2 1/2 months, most of it during the summer.  I had my infusions at night eventually so that I didn’t have to carry the bag around in a suitcase when we spent a week at a cottage.  I just had a sleeve to cover the tubes hanging out of my arm, but on a hot day that can be annoying.  It’s good that you have a surgeon that you are happy with.  If things don’t get better, you can choose what is best for you.  Good luck!

So here's the good news.. my Surgeon prescribed a month worth of nortripyline within 20 mins the contractions started fading away thank you guys so much,  all the pressure is gone, i don't feel like i have to go to the bathroom all the time, no more accidents , its been 8 hours and no contractions no bowling ball feeling, it worked quickly. I was able to lay down and sleep without discomfort, thank you for all the support with you guys id still be in pain, my surgeon didnt think it was going to work she believes my pouch is just filled up but I told her i can empty my pouch just fine.

   I'm going to wait a few days to let my surgeon know just in case,  but I know its working. I'm so much better. Now I can spend time with my son!!

  Thanks again!

@StevenChar78 posted:

So here's the good news.. my Surgeon prescribed a month worth of nortripyline within 20 mins the contractions started fading away thank you guys so much,  all the pressure is gone, i don't feel like i have to go to the bathroom all the time, no more accidents , its been 8 hours and no contractions no bowling ball feeling, it worked quickly. I was able to lay down and sleep without discomfort, thank you for all the support with you guys id still be in pain, my surgeon didnt think it was going to work she believes my pouch is just filled up but I told her i can empty my pouch just fine.

   I'm going to wait a few days to let my surgeon know just in case,  but I know its working. I'm so much better. Now I can spend time with my son!!

  Thanks again!

   

Your welcome, keep us updated

That is awesome news mate,I don't know how people went through this without the internet and not being able to hear other people's tips and stories.Emily has helped so many.hope it continues to get better.🤞🌞

just an update.. still no contractions I am so happy now!! i cant believe this little pill is that strong it can stop the most horrible pain. May god bless all of you!!

You are so welcome! Do you think you want to stay on it permanently?

So happy to hear Steven.  I used to take codeine for pain but my doctor won't give it to me anymore because of all the blockages that I continue to get. Does the medication that you take slow your bowels?

My son started Cymbalta but it did not help with the painful contractions.  He is been suffering for almost a year, right after connection surgery. Contractions are constant.  Do you think the other one you are taking might be better.  Please let us know.

Thanks!

@Anais posted:

My son started Cymbalta but it did not help with the painful contractions.  He is been suffering for almost a year, right after connection surgery. Contractions are constant.  Do you think the other one you are taking might be better.  Please let us know.

Thanks!

I am sorry that did not work honey, I would reach out to the gastro/surgeon at this point.

sorry Anais to hear that, my contractions started a year after the first j pouch surgery the nortriptyline does work but I found out after over taking it it will completely stop working,  my contractions started back up on Saturday and have been suffering since i stopped taking the  nortriptyline  for about 30 hours and i started taking it again and my contractions are gone i would try this medication it helped me a lot just make sure he takes as directed, because i had a small contraction i freaked out and i took another one on top of the already 2 doses and it just completely stopped working.