ive probably spent the last 6000 nights watching family and friends consume delicious meals while i endure white rice product time after time. im now closing in on 3 months post takedown and i continue to be tortured with zero flavor and texture. i truly dont know how much longer i can do this but its zapping my will to live. my body is so weak an worn, everything hurts and i am in the middle of what i believe is a nervous breakdown again. as much as i love this site words from members my family and friends are little consolation while reaching for my low fat rice crisps. im nearing the end of my sanity my friends. just cant do this anymore...
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Tom, I am so sorry you are going through this. My heart goes out to you. You sound like you are at a very low point. I think many of us do suffer some degree of PTSD from this illness and you are most definitely NOT alone in that regard. I went through a very low point a few months after my colectomy as well, I guess when the realization all sunk in. But I think the support you are looking for now goes far beyond the advice, reassurance and encouragment people on this site can give you. Is there are crisis center in your area that you can call? It might help, just to bounce some of your feelings off somebody. I really hope you can find some peace of mind. We are all rooting for you.
heres the thing, i paid my dues 6000 times and ive asked god for some mercy so so many times and every day gets darker and darker. i can take the discomfort to a degree but this selective starvation is beyond my limits. it is a form of torture and i am as of recent starting to lose my temper on myself. the other night i repeatedly punched my leg til i bruised myself then i fell apart and sobbed until the next messy yucky gross painful bm. i may be one of the lowest j-pouchers of all times. sometimes i feel like god is punishing me and will for an eternity...
Tom,
At age 10, as I was being wheeled into O.R for about the 20th time in my little life for what turned out to be a major life threatening surgery, I started to cry...a 10 year old's tears of fear...and my dad slapped me across the face. He told me not to cry, never let 'them' see my tears or my fear...that this was just the begining of a very long and painful ride and that if I gave up then...I would never make it up the hill...granted...I would have prefered hugs and consolation but he was right...in the long run I learned to face my pain and fear and go beyond it...it does not mean that I do not cry in terror when things fall apart or that I don't pray to God for help and resolution...But it does mean that I have learned to 'take it' and move forward...I spent my teens on a very restrictive diet and half of my adult life too...(in my chase Chicken and fish) and although I would have loved to eat what everyone else was and do whatever they were doing I learned that that is the price that I have to pay for moderate heath (not even good health)...but there you have it...you are going through a very rough patch and I understand it but constatnly giving in to the frustration and pain and anger is getting you nowhere fast...you are deteriorating and falling apart...and now you have started hurting yourself to boot...NOT good. You are not being tortured. You are not being punished for anything. You are not paying for some past sin or action in a karmetic world...You are just suffering because that is what happens to some of us. Period. It is random and unfair and it sucks but there you have it. So Stop it...stop hurting yourself. It will not make the rest of the pain go away. You are only 3 months post op...yes, maybe you have one of the few pouches that it uncooperative from the start and does not want to be trained but your frustration and anger at your situation is hurting you more and not helping your pouch. If you need your doctor to put you on more or different anti-depressants then now would be the time to make that call...if you need help then tell him...but you are in so much pain that you are starting to head down a road towards self destruction and that is even worse. My pain and experience will not lessen yours one iota and all of our suffering will not help you at 3am when you are in tears and sitting on the throne in pain but please know that we are all with you and that this is not the end...just a very unhappy passage that you have to go through to get to where you need to go.
Sharon
At age 10, as I was being wheeled into O.R for about the 20th time in my little life for what turned out to be a major life threatening surgery, I started to cry...a 10 year old's tears of fear...and my dad slapped me across the face. He told me not to cry, never let 'them' see my tears or my fear...that this was just the begining of a very long and painful ride and that if I gave up then...I would never make it up the hill...granted...I would have prefered hugs and consolation but he was right...in the long run I learned to face my pain and fear and go beyond it...it does not mean that I do not cry in terror when things fall apart or that I don't pray to God for help and resolution...But it does mean that I have learned to 'take it' and move forward...I spent my teens on a very restrictive diet and half of my adult life too...(in my chase Chicken and fish) and although I would have loved to eat what everyone else was and do whatever they were doing I learned that that is the price that I have to pay for moderate heath (not even good health)...but there you have it...you are going through a very rough patch and I understand it but constatnly giving in to the frustration and pain and anger is getting you nowhere fast...you are deteriorating and falling apart...and now you have started hurting yourself to boot...NOT good. You are not being tortured. You are not being punished for anything. You are not paying for some past sin or action in a karmetic world...You are just suffering because that is what happens to some of us. Period. It is random and unfair and it sucks but there you have it. So Stop it...stop hurting yourself. It will not make the rest of the pain go away. You are only 3 months post op...yes, maybe you have one of the few pouches that it uncooperative from the start and does not want to be trained but your frustration and anger at your situation is hurting you more and not helping your pouch. If you need your doctor to put you on more or different anti-depressants then now would be the time to make that call...if you need help then tell him...but you are in so much pain that you are starting to head down a road towards self destruction and that is even worse. My pain and experience will not lessen yours one iota and all of our suffering will not help you at 3am when you are in tears and sitting on the throne in pain but please know that we are all with you and that this is not the end...just a very unhappy passage that you have to go through to get to where you need to go.
Sharon
I am so sorry you are going through this. Some people just have a tougher time with this j-pouch life. I am one of those too. Taking the colon out( or any major organ I can imagine) also makes us very emotional and can really reak havoc on our mind body and soul. I am going for a pouch scope in about 2weeks to see what is going on. For now I am back on cipro which really makes me feel so much better. Maybe your doc can prescribe that till you get over this hump. Hang in there, I understand!!
Tom-
I'm sorry you're having such a rough time. This is not a punishment, of course, and it's certainly not your fault. I've sometimes gotten to the point when any food seems too risky. I would suggest you're guiding your diet by more than fear, though. Try some things (in moderation) in moderation that folks have recommended here, give them a proper trial, and see how they work for you. Metamucil may help, as may lomotil. Make sure you didn't stop prednisone suddenly, and ask your doc for some ideas. There is likely to be a formula that works better for you, but the search may be challenging. Good luck!
I'm sorry you're having such a rough time. This is not a punishment, of course, and it's certainly not your fault. I've sometimes gotten to the point when any food seems too risky. I would suggest you're guiding your diet by more than fear, though. Try some things (in moderation) in moderation that folks have recommended here, give them a proper trial, and see how they work for you. Metamucil may help, as may lomotil. Make sure you didn't stop prednisone suddenly, and ask your doc for some ideas. There is likely to be a formula that works better for you, but the search may be challenging. Good luck!
Tom - I am so sorry for what you are going through. God is not punishing you. You will come out of this a stronger person and someday you will understand why God sent you down this path. As I sit here writing this to you, I cannot help but cry. I am thankful, yes thankful for what happened to me. I am a better person because of it. I am a very stubborn person and I REFUSE to let it defeat me.
OK - I'm gonna' stop blubbering. I would think you could be adding some things to your diet by now. Your surgeon should have given you some kind of guidelines about foods to eat after your surgery. Also, ask your doctor about an antidepressant. I have taken a mild anti depressant ever since my surgery and have no plans to stop (8 years). Try to remember that this is a slow process. And keep posting on this forum. Everyone here understands what you are going through. But I am telling you, it will get better. Good luck.
OK - I'm gonna' stop blubbering. I would think you could be adding some things to your diet by now. Your surgeon should have given you some kind of guidelines about foods to eat after your surgery. Also, ask your doctor about an antidepressant. I have taken a mild anti depressant ever since my surgery and have no plans to stop (8 years). Try to remember that this is a slow process. And keep posting on this forum. Everyone here understands what you are going through. But I am telling you, it will get better. Good luck.
Please print out this thread and show your doctors. They need to understand how much you are being affected. Is there anyone in your family who can take charge of the situation for you? Someone to help with the dr visits and explaining the situation? Sometimes it is easier to have someone do the fighting for us when we are so worn out. I would push to get some therapy to help you deal with the emotions of it all. I saw a therapist for 3 years post surgeries and it really did help.
i tried all those things and got scoped last week and was put on hydrocortisone suppositories for cuffitis but the pain i have on one side of my anus is if anything worse than last week. i would think if it was healing pain 3 months out the whole anus would ache but its one specific area and that frustrates me fearing a chronic problem. obviously my sergeon that did my pre takedown pouchogram and my new surgeon who did a flex sig last week did not see anything but its been hurting in that one spot since j-pouch creation. it is the single root cause of my problems. it aches like a broken bone or a tooth aches and radiates making life miserable. when gas builds up the pain is paralyzing. i have a recently subdued hemorrhoid right at that spot but ive had it for years and its never hurt like this before. its impossible to even consider sitting down so most of my life is on the can tilted to the other side as to not hurt it further or in bed. i might start making more noise and ask for a scan, mri etc. any thoughts?
The only thing that I can think of is a naisant fissure...the one thing post op that hurt so bad that I actually snaped a tooth from the pain...excruciating every time that I intubated my k pouch...it is usually in a very isolated spot, hurts like hell and only gets worse with time unless it is treated and heals...sometimes they are so small at first that they aren't really visible and if you have a hemmoroid on the exact same spot it could be camoflaging it...just a thought...
Sharon
Sharon
what can i do to heal it? because i was just closing in on this very thought before you replied...
the one thing that concerns me is i dont have the symptoms ive read. only aching that increases throughout the day. no burning itching and no pain during a bm but definitely for hours after...
the one thing that concerns me is i dont have the symptoms ive read. only aching that increases throughout the day. no burning itching and no pain during a bm but definitely for hours after...
First off I would have someone take a pee with a magnafying glass...(yes, potentially embarassing but...) and see what they can see...it can look as small as a papercut...(and hurts a 1000xs more!)...then there a quite a few pomades and creams to be used but for me the most effective contained a local anesthetic that calmed thing down immediately...my surgeon even gave me a tube of extra strong local to use regularly and liberally to control the pain until healed....I used a polysporin type cream with built in local and added and other local anesthetic in between...it took a while but it did heal...
Either way I would look into it and try the local anesthetic to see if it gives you any relief...that in itself will tell you if it is 'topical' or deeper.
Sharon
Either way I would look into it and try the local anesthetic to see if it gives you any relief...that in itself will tell you if it is 'topical' or deeper.
Sharon
but i have no stinging itching or burning and no pain during a bm. only what feels like a deep ache progressing throughout the day at the anus/rectum area that resembles a broken bone ache or a toothache. that doesnt sound like a fissure does it? all i know is im coming up on a week on the hc suppositories for my cuffitis and i feel no different than before i started. added a tiny amount of lean ground turkey yesterday and passed pure acid over my healing hemorrhoid only to have it start swelling back up again. back to single grain baby food rice cereal...
Then it's not likely a fissure.
kathy
kathy