I’m sick & tired of being sick & tired. This disease is exhausting. Family & friends think they know, but they have know idea what a struggle our daily lives are. I’m not usually a complainer, but after 40yrs it’s just taking its toll.
Hope everyone has a Happy New Year! 🎊
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So sorry you're having a hard time. I'm only at 10 months, but yes it's hard. I wish every day for more energy.
I am so sorry you are having a rough time. I think you have to look at the big picture. You have made it 40 years battling this disease. You have survived many difficult periods up to this latest and probably many as bad as now or worse! If you have overcome all this previously, you no doubt can overcome this. (That is sort of the internal chat I have with myself during difficult periods). Hopeful that it might prove helpful for you as well. Plus, there is always hope for new and improved treatments coming our way which is another reason to battle through the difficult periods.
Ive had my pouch half of the duration you have had so far @ycrockpot,
19 years now, surgery was october 15, 2001. And, I understand your feeling of family not grasping/understanding every thing about our issues that come a long with not having the colon and the issues that are associated with having an ileal reseviour/j-pouch.
imparticular, neither of my brothers, both older, are versed in any medical issues at all. My mother, the only parent I have had for nearly 8 years now, is in her early 80's and with everything i have dealt with health wise pouch related and not pouch related, equally/alike i worry what will my life will be like after her.
I dont mean anything bad but some times i just wish my own mother could be like a good 20 years younger than her actual age so that i could have her around. Instead i was in my early twenties when i had to have j-pouch surgery and she was early 60's in age. It feels like those years just crept up and also flew on by.
With my oldest brother, late 50's, he not only doesnt comprehend any medical problems, but mentally he cant handle health issues and problems and finds everything "depressing"
While my mother always listens, i know she doesnt not always no how intense and upsetting things can be for me. I eat and have to go to the toilet immeditaley most of the time. My gastro has me on the mesalamine am and pm but that was for ibs-d issues and microscopic colitis and he said i had mild pouchitis upon last flex sig done october 7th 2020. Even with the ant inflammatory drug with a jpouch most of my life of having it the 19 years now alli really know as "my normal" is that i will have to go defacate immediately after eating. Most people on the outside, family or not dont comprehend what it is like to be in someone of our shoes. Others have no sympathy.
I have found over the years with my operation its hard to socialize in public. When times were good, no corona virus pandemic about and such. You just dont want to go to gatherings at restaurants or establishments and if you do you know their bathroom at said location will be your room for the night or day depending on the time of that outing. I completely understand and get you ycrockpot. It sucks, but i still consider myself a survior & also a fighter regardless of how crappy the cards i'd been dealt with really are.
I certainly get you and know how you feel and why. Our illnesses to an extent robbed us of years of our lives because they did not allow us to live in good health.
Best Wishes & A Happy New Year as difficult it might be and less than ideal due to the pandemic and such.
-Len
Yes, sometimes this whole thing gets me down, but it is a far cry better than pre pouch for me. It helps to remember what brought us here.
40 years - well that gives me hope that I'll still be cranky about my crappy life in the bathroom when my jpouch turns 40, I sure hope it does. Agree totally with kta that it is loads better than when I had the constant bloody diarrhea. And with you that it's a daily struggle. We can have both those things at once.
I never had pre-pouch, I was diagnosed with UC at the time of surgery. Instead of HS graduation I was having surgery to save my life. For the most part life has been good, this past year got to me, not because of covid but a bad case of Cdiff & pouchitis which I never really had before until 2020. It just gets very tiring sometimes, with lack & cost of medicines.
Stay positive & stay safe!
Wow, that's both really sad (so sick as a teen) and really great (you made it!!)
I haven't had pouchitis yet myself, but imagine it's like when I had the painful colitis flare ups. Hopefully you have kicked the CDiff and won't have it ever again.
For me the 'lockdowns' had a silver lining, since I'm working from home. It's ever so much easier for me not to have to deal with fasting to get through the day at work and having to use a public bathroom all the time.
ytcrockpot,
Glad I decided to visit the "J-pouch Group" again. I've been a member since 2011 I believe and haven't posted or commented in a few years. I find that I become a little more depressed when I see all of those like me going through difficult times. I guess the positive, is knowing that I'm not alone and I do believe having this forum is extremely beneficial. I would love to hear from "medical professionals" that aren't trying to sell me a drug or miracle formula, but I understand this website probably operates on a minimal budget and is managed by an individual. (BTW, who ever you are...Thank you!)
Anyway, kudos to you "YT" for making it 40 years post J-pouch, it's a testimony to your grit and determination. I hope it provides you with some comfort knowing you are not alone in how you are feeling. Although I am just going on my 11th year with a J-pouch, and dealt with pretty severe UC for about 10 years, I certainly can relate to some degree.
About a year after my final J-pouch surgery I decided I could no longer continue working. I had a good paying job with SSA. The down side is that it was so stressful I believe it's what helped push my body into a flare-up from which I could not recover. Anyway, the biggest reason for deciding to stop working and apply for disability was due to extreme fatigue. I would get so tired during the work day that I was falling asleep while trying to complete face-to-face interviews with customers! (A large part of this fatigue was that I would essentially fast all day long to get through the day without multiple BM's and then eat too much after work that would cause me to be up several times through the night using the bathroom.)
Just realized I'm giving too much info! Sorry, just know you are not alone. I especially get frustrated feeling like no one, especially family, really understands the daily struggles our situation imposes. I have a very loving and understanding spouse, but even she sometimes says and acts like I'm being over dramatic or complaining for no reason. It hurts, but how could she ever really know, right?
Please hang in there, you give hope to many knowing it can be done!!
Blessings, Lewis
Agree it’s difficult at times and it does get you down , trying too keep positive is all we can do .
I still think we are here for a reason.We will probably never know what that reason is but even if it's to help surgeons and nurses learn to help future patients or find a cure.or help others going through the same thing.
I used to say that this is not a disease for sissies or cry babies...we go through hell and a half and do not even get the 'sympathy' that other diseases get.
We have hidden diseases in very 'unpopular' places that, at best, no one wants to talk about and 'at worst' they make fun of!
We get the, 'but you look so good' or 'you must be faking it' or 'I don't understand, you should be healthy now that they took out your colon' or 1000 other comments.
We gain weight from meds, lose weight from disease and hide in our rooms out of fear or in pain, cancel dates, meetings and appointments at the last minute or just don't show up...But we, as a lot, are not complainers...for most of us, no one will listen anyway.
You are strong, intelligent and courageous (and you are allowed to be sick and tired, you deserve to be able to rant a bit) and that is more than most people can say, so hats off to you.
No advice, just admiration
Sharon
@skn69 WoW, what a reply to my post. You hit the nail on the head, exactly. Thank you so much for those words 😊
@lewis posted:ytcrockpot,
Glad I decided to visit the "J-pouch Group" again. I've been a member since 2011 I believe and haven't posted or commented in a few years. I find that I become a little more depressed when I see all of those like me going through difficult times. I guess the positive, is knowing that I'm not alone and I do believe having this forum is extremely beneficial. I would love to hear from "medical professionals" that aren't trying to sell me a drug or miracle formula, but I understand this website probably operates on a minimal budget and is managed by an individual. (BTW, who ever you are...Thank you!)
Anyway, kudos to you "YT" for making it 40 years post J-pouch, it's a testimony to your grit and determination. I hope it provides you with some comfort knowing you are not alone in how you are feeling. Although I am just going on my 11th year with a J-pouch, and dealt with pretty severe UC for about 10 years, I certainly can relate to some degree.
About a year after my final J-pouch surgery I decided I could no longer continue working. I had a good paying job with SSA. The down side is that it was so stressful I believe it's what helped push my body into a flare-up from which I could not recover. Anyway, the biggest reason for deciding to stop working and apply for disability was due to extreme fatigue. I would get so tired during the work day that I was falling asleep while trying to complete face-to-face interviews with customers! (A large part of this fatigue was that I would essentially fast all day long to get through the day without multiple BM's and then eat too much after work that would cause me to be up several times through the night using the bathroom.)
Just realized I'm giving too much info! Sorry, just know you are not alone. I especially get frustrated feeling like no one, especially family, really understands the daily struggles our situation imposes. I have a very loving and understanding spouse, but even she sometimes says and acts like I'm being over dramatic or complaining for no reason. It hurts, but how could she ever really know, right?
Please hang in there, you give hope to many knowing it can be done!!
Blessings, Lewis
This is what I’m going thru at the moment , working full time with the National Hearth Service in Scotland , the fatigue is awful some days due to being up thru the night . Not sure how long I can carry on working full time . Managed the last 4 years full time but it’s taking its toll . I want to go as long as I can
It’s very hard working when your pouch is giving you issues. I stopped working 5yrs ago. It was the best decision, I’m able to focus on me and take care of myself without worrying about work. I know not everyone can stop working, but if you can, it’s worth it.
im in the 9 percent group that goes 10-15 times a day in a 24 hour period. I am still taking mesalamine at the lowest dose at which enables me to function and the urgency is not there, while the frequency is. Otherwise, it was total mayhem with regards to the inflammatory process. Things have calmed down to a manageable extent. This all evolved later on with me. I had easier years when my pouch was younger. Now comming close to 20 year mark as a jpoucher & veteran living with a subtotal colectomy.
While i have accepted my situation long ago, the reality of it is less than ideal.
without the mesalamine i would be bonkers literally from a mental standpoint in addition to the physical standpoint.
--Len.
