Negativity

I see SO much negativity on this forum and it’s very discouraging. As a community we need to accept the fact that we have IDB/IBS Chrons or UC and MOVE ON. We CANNOT live in the past and dwell! It is NOT our fault that we suffer from these conditions and all we can do is remain positive and help eachother get healthy! Do not give up! Eat healthy! If you are having major problems, maybe it’s time to make a MAJOR change! Maybe change medications, change doctors, change your diet, change your attitude! A positive mindset can overcome anything & remember that IBD/IBS is triggered by stress! Let’s help one another stay positive instead of ranting on about “living in hell” or complaining! Come on!!! We have all been through multiple surgeries!!! We are stronger than this! Anyone feeling down, feel free to DM me or reply here ! I am here for you! Also, I feel like many of the people “suffering” on here eat whatever they want with little to no exercise! Just remember, Mind over Matter! & before anyone says I don’t know what I’m talking about I’m 26 and am on my 8th surgery with several J pouch complications! We’ve got this!! Just remember you are LOVED ! Smile & be thankful you are still alive!!!! If you woke up today, you are blessed!

Original Post

I understand what you're trying to say; however, this forum is also a very good place to vent.  Most people don't understand what we've gone through or how life changes after a j-pouch. It is very easy to feel alone and think no one has ever had happen what I've had.  This forum gives us a place to not only seek answers, but to connect with someone who understands. Sometimes it means letting off steam to people who can relate.  Sometimes it means encouraging someone else who is down that there is light at the end of a dark tunnel.

 There is a time to weep with those who weep, mourn for those who mourn and rejoice with those who rejoice.  This forum is to be a support to one another in each of these areas.

May we each do our part to support and uphold one another.

I agree with Still Standing, that what is being interpreted as negativity is in many cases venting, which is certainly allowed here.  We all have had bad days, and we all differ in how we deal with it.  I think Pouchbro was specifically troubled by the thread called 'Death". I was as well, although I did not post there, as he did.  There is something to be said about maintaining a positive attitude, but very often it is easier said than done.

 

I agree with what's been said. But I also think people should stop looking for quick fixes or harrasing their body beyond repair. Visiting a doctor when its absolutely necessary should be the plan and if its a minor setback then changing habits and diet should be adopted. Also I find many people are over relying on medicine, I was promised a near normal life by my surgeon that would be 4-6 bms a day. I am 7 months post takedown going 8 times. It doesnt bother me one bit. I stand up between gatherings, parties , meetings and use the washroom, I fart crazy big and laugh if someone does, I have a life I couldnt even imagine with UC, I couldnt even think of being in a relationship, having to go out with friends. My surgeon told me this was the CURE and I took it that way and I am not letting anyone else make me feel any other way. What is destined will happen.

The main reason I opted for the surgery was I wanted to quit all meds permanently and have a control of life. I pretty much have both. Many times people forget with UC/Crohns they went the exact same or even more times with blood and pain to accompany.

All said its overall a good place, everyone has to vent out his anger/thoughts/joys. Not everyone gets the same results. Hats off to those who battle this thing without fretting about it. 

I tend to agree eith all. We have to have a positive attitude on this matter but on the other hand it’s a good platform to vent how you feel. I think it is an excellent information site and I have learnt a lot from others by just logging in. However I do believe it is vital if have a good doctor who you can talk to about your condition and also things in general. That is generally how I am surviving this condition. I just look upon this as another health issue to overcome. I’m not a defeatist. Life is made up of challenges. This is just another one.  Seize the day and live one day at a time. 🌷

I agree that this is a good place to vent & We have a section SPECIFICALLY titled Rants/Raves...... however it is not a solid argument to any of my statements. If you need to vent, maybe you should consider seeing a Psychologist to talk to about your problems. Venting and saying things like ”I want to give up” are two totally different things. Like I said a lot of the negative posts on here are very discouraging to new J-Pouchers who probably don’t even have accounts and are just skimming through looking for answers. We need to be more positive and supportive as a community hands down. This forum seems to be lacking Moderarion and a lot of the posters share a similar Negative mindset. Let’s help eachother stay Positive! Being Negative will literally get us no where! 

Raj posted:

I agree with what's been said. But I also think people should stop looking for quick fixes or harrasing their body beyond repair. Visiting a doctor when its absolutely necessary should be the plan and if its a minor setback then changing habits and diet should be adopted. Also I find many people are over relying on medicine, I was promised a near normal life by my surgeon that would be 4-6 bms a day. I am 7 months post takedown going 8 times. It doesnt bother me one bit. I stand up between gatherings, parties , meetings and use the washroom, I fart crazy big and laugh if someone does, I have a life I couldnt even imagine with UC, I couldnt even think of being in a relationship, having to go out with friends. My surgeon told me this was the CURE and I took it that way and I am not letting anyone else make me feel any other way. What is destined will happen.

The main reason I opted for the surgery was I wanted to quit all meds permanently and have a control of life. I pretty much have both. Many times people forget with UC/Crohns they went the exact same or even more times with blood and pain to accompany.

All said its overall a good place, everyone has to vent out his anger/thoughts/joys. Not everyone gets the same results. Hats off to those who battle this thing without fretting about it. 

You are very fortunate to be off meds (& one of the very few) however we all know that J-Pouch surgery or a Colectomy leading to an ileostomy/colostomy is NOT a cure. A cure would be an option where we get to keep our colons. We are missing half of our digestive system at the end of the day and although we can do many things to feel better, our bodies simply cannot handle things the way they used to! Again, this may seem negative so it is hard to find a balance between being blunt and negative! 

Pouchbro posted:
Raj posted:

I agree with what's been said. But I also think people should stop looking for quick fixes or harrasing their body beyond repair. Visiting a doctor when its absolutely necessary should be the plan and if its a minor setback then changing habits and diet should be adopted. Also I find many people are over relying on medicine, I was promised a near normal life by my surgeon that would be 4-6 bms a day. I am 7 months post takedown going 8 times. It doesnt bother me one bit. I stand up between gatherings, parties , meetings and use the washroom, I fart crazy big and laugh if someone does, I have a life I couldnt even imagine with UC, I couldnt even think of being in a relationship, having to go out with friends. My surgeon told me this was the CURE and I took it that way and I am not letting anyone else make me feel any other way. What is destined will happen.

The main reason I opted for the surgery was I wanted to quit all meds permanently and have a control of life. I pretty much have both. Many times people forget with UC/Crohns they went the exact same or even more times with blood and pain to accompany.

All said its overall a good place, everyone has to vent out his anger/thoughts/joys. Not everyone gets the same results. Hats off to those who battle this thing without fretting about it. 

You are very fortunate to be off meds (& one of the very few) however we all know that J-Pouch surgery or a Colectomy leading to an ileostomy/colostomy is NOT a cure. A cure would be an option where we get to keep our colons. We are missing half of our digestive system at the end of the day and although we can do many things to feel better, our bodies simply cannot handle things the way they used to! Again, this may seem negative so it is hard to find a balance between being blunt and negative! 

I never said the surgery is a CURE, the exact line were my surgeon said it is and I am going to put my faith in it. Whatever has to happen will happen. I know its not a solution with an intestine missing but its the only option at present. I could no longer take steroid and I had no intention to get on biologics so surgery is what I chose.

Agreed that this surgery is not a “cure “.  In general, I have been pretty lucky so far in the 2 1/2 years since takedown.  Things may not be perfect but they sure are better than the alternative.  I do take Lomotil as needed as well as Align and Benefiber and try to have a pretty healthy diet and exercise program.  All in all I have few complaints.  I have so many more good days than bad.  I would encourage others to have this surgery, but to have realistic expectations and to understand that we all don’t have the same issues.  I also empathize with those who have serious complications.  

Pouchbro, I joined this forum before I had my surgeries. I wanted to know what life with a j pouch looked like. I never really felt that this site was negative. I know there are a lot of really knowledgeable people on here that help other people that want to hear it from someone who has been there.  My life after my surgeries is far from perfect, but it beats having UC by a long shot. I think we all feel safe here and feel as though on those days nothing is going right, we can vent here, because we all get it. Some of us can't get into our GIs for months for an appointment, so this is a good place to maybe get some good advice on what could begoing on with our pouches. I'm sorry you feel it's negative here, but know we don't all feel that way.

Aimc posted:

Pouchbro, I joined this forum before I had my surgeries. I wanted to know what life with a j pouch looked like. I never really felt that this site was negative. I know there are a lot of really knowledgeable people on here that help other people that want to hear it from someone who has been there.  My life after my surgeries is far from perfect, but it beats having UC by a long shot. I think we all feel safe here and feel as though on those days nothing is going right, we can vent here, because we all get it. Some of us can't get into our GIs for months for an appointment, so this is a good place to maybe get some good advice on what could begoing on with our pouches. I'm sorry you feel it's negative here, but know we don't all feel that way.

You are absolutely right however there is no denying that there are some very negative posts and my point is that a reader, not a member may be discouraged from reading a lot of the posts that seem negative. 

I would not say that this forum 'saved my life' but pretty close.

I logged on and connected with others when my life was at the bottom of a black hole and I had nobody on this planet who could understand me. I cried, complained, vented, raged against the medical professionals where I live and the lack of options offered to me. I had suffered in silence for years and the dam finally burst.

I found kindness, warmth, understanding and help here. Lots of help. 

I made great friends, possibly a couple of fans and certainly a few people who dislike my point of view. You cannot be loved by all. 

I am thankful and grateful beyond measure for the possibility that this site gave me to cry and vent and bi-ch my little heart out until things got better. 

Then I came back to help others in the same boat.

I am at a reasonably good place right now, health-wise. I am lucky. I have been through more than most and less than some. 

We do not all get the chance to heal. But at least here we get the chance to complain about it.

That is the whole point of coming here. 

Freedom.

You take the good with the bad...like in life.

Sharon

p.s. I am a professional optimist. I get paid to teach people about happiness. I lecture around the world on it. (paradoxical, isn't it????) The first part of all of my presentations is to lead those who have paid to come and see me...to tears. Yes, I make them cry. For their pain, sadness and loneliness. They cry because you cannot feel joy until you have felt sadness. You cannot understand success until you have felt failure. 

Will be 10 years since my takedown  this December.  I battled UC for over 30 years then was diagnosed with stage 2 colon cancer in 2009. Thank God it was caught in time through a colonoscopy.  I had my surgeries at the Cancer Treatment Center in Zion, Illinois.  The commercials you see about CTCA are true, it is a wonderful facility with fantastic surgeons and nursing staff.  I owe them my life as well as The Good Lord. I'm living a very normal life, working out, playing golf and coaching baseball in Florida.  I do eat Metamucil  wafers with most meals and do deal with diarrhea at times but my quality of life is great.  I don't have the urge to find a bathroom like with UC but do go 4-6 times per day. Not a big deal compared to the horrible life lived with UC.  I really feel for the people that have had problems after surgery but I'm here to tell you that I wish I would have had it at an early age.

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