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Posted 7/24/2013 5:53 PM (GMT 0)
 But I see your point, hanging around even though you're doing ok... but personally, I find that to even have UC play such a major part in my mind impacts how I'm doing... Does that make sense? If I'm thinking about it, arguing about it, checking the forums 50x a day... then no, I'm not really ok. Or "normal".

 ( this thread is so long, I thought you were someone else....)


Posted 7/24/2013 5:56 PM (GMT 0)
Well this thread has gone far afield...

ks, I'm in the midst of a three step laparoscopic, except for a "bikini" incision (3" horizontal over my pubis) during step 2. Step 1 I spent 5 days in the hospital, Step 2 I spent 6. My surgeon is predicting a 4 day stay for Step 3 but we'll see next week wink

Robert said: "That's kinda scary. I wonder how many ways "failure" manifests itself: a rip or tear in the J-Pouch? Infection? Blockage? God, imagine having to run to the ER for something like that." Um, no. Please read more carefully before posting somewhat inflammatory conjecture... a rip or tear in the j-pouch is VERY unusual. That would be called a bowel perforation. Failure is typically caused by chronic pouchitis (a similar inflammatory state to colitis), cuffitis (inflammation in the rectal cuff), or fistula (abnormal communication between bodily organs, such as a pouch-vaginal fistula, usually caused by surgical error, infection, or Crohn's disease). And again, if you go back and read EVERYTHING that has been posted here, failure is very uncommon.
Posted 7/24/2013 6:01 PM (GMT 0)

fruitgirl said...
I don't think he was mocking conventional treatments -- I think he was mocking you. You seem to not be doing very well, given that you're asking so many questions about surgery. Perhaps I'm wrong, however.

Eva, I'm doing really, really well, yet I'm still here. Mostly because I want those who are newly-diagnosed to see that they might be super lucky and find a treatment that get them into remission and keeps them there. I think that since many of the members on this forum are struggling, it can be pretty scary for the newbies. I hope that seeing that I'm in a really solid remission, on pretty "safe" meds is at least a little bit comforting.

I'm just curious about surgery, perhaps it is in my future. Fortunately, aside from a recent doubt with extreme knee pain and foot swelling which I'm quickly recovering from, I'm doing quite well and have been in remission for about two years without any medication. I'm just humble before the unknown - in this case, the future of my health.
Posted 7/24/2013 6:03 PM (GMT 0)

Adventureuc said...
"I agree with your sentiment, although I am very cynical of people who claim to have "cured" themselves by eating this, avoiding that, supplementing this, etc. I roll my eyes when I hear or read about the SCD or other fad diets with no scientific basis. But hey, if it works (or if someone imagines it to be working), good on them."

What do you think medicine is made of - Pixie dust? Your body is still ingesting a substance. Why is diet-elimination so terrible? Who wouldn't try anything that might work? There are so many people on this forum that have real success from different products/food that provide alternatives and hope for so many. After reading on here people who stick crap up their bum and claim to be cured, I'm not above trying anything nor would I even suggest that they are wrong to say they aren't cured if they feel they are.

Medications are recommended based on scientific evidence of their efficacy. The same cannot be said for people claiming they "cured" themselves by consuming psyllium husks and avoiding dairy, while doing bi-weekly tarot card readings.
Posted 7/24/2013 6:21 PM (GMT 0)
Eva...I think the reasons we (who are doing well) frequent the boards is because we like it here and to offer support/suggestions/to interact with those we connect with/seek different perspectives.....etc.

 Being "social" comes in many forms....try not to make it a bad thing...

q

Posted 7/24/2013 6:23 PM (GMT 0)

quincy said...
Eva...I think the reasons we (who are doing well) frequent the boards is because we like it and to offer support/suggestions/interact..etc. Being "social" comes in many forms....

q

Absolutely. I was away from here for years after feeling better. I now regret that because I think I can offer some perspective and experiences that those new to the disease looking for information can appreciate. The truth is I'm actually doing quite well, at the moment, all things considered. But generally speaking, the participants in online illness communities tend not to be those that are feeling well.
Posted 7/24/2013 6:29 PM (GMT 0)
"Medications are recommended based on scientific evidence of their efficacy. The same cannot be said for people claiming they "cured" themselves by consuming psyllium husks and avoiding dairy, while doing bi-weekly tarot card readings"

I'm reading the book "Breaking the Vicious Cycle" right now. It actually has a scientific basis and originates from qualified MDs who cured various intestinal ailments using diet elimination. The author has a personal relationship with UC as her daughter was to the point of colon removal when she tried the SCD diet and cured her daughter completely. I haven't gotten to the Tarot Card reading portion yet but what I've been reading makes sense so far. As far as the medication's comment, there are plenty of medicines prescribed that have proven to be rarely effective yet are prescribed to almost every patient with UC in case in might work as evidenced by the many commentators on this site who are seeking other solutions.
Posted 7/24/2013 6:48 PM (GMT 0)
"Eva...I think the reasons we (who are doing well) frequent the boards is because we like it here and to offer support/suggestions/to interact with those we connect with/seek different perspectives.....etc. "

well, ya, there's that too :-)
Posted 7/24/2013 10:22 PM (GMT 0)
I understand, Quincy & Soystud.... however, for me, I find that the more I frequent the board, the more my UC is first & foremost in my mind. Regardless of doing "well" or crapping my pants 2x a day. When my "social" interactions revolve around the UC forum, that's too much. I do believe that UC is heavily influenced by the mind- not that you can control it thru yoga/meditation, etc. But we've all read the threads that are posted from time to time about what type of person you are- and, hey, surprise! The vast majority of us are control freak type A's. I just hate to give UC that much real estate in my own life, know what I mean? And it does seem, that in the past couple years, it's become much more of a "I'm right, you're wrong!" mentality on here- I think we forget, there are no right or wrong answers, just opinions. Are we really this heavy-handed in "real" life? doubt it. It's not a bad thing, just wish it wasn't so bossy & argumentative. And for the original title- right, why not surgery? I mean really, WHO CARES??? Some people won't even give Asacol a go, what's the big deal?
Posted 7/24/2013 10:34 PM (GMT 0)
should I stay or should I go ?

good stuff el -

i'm thankful we all have a choice whether we tune in or tune out -

I agree, things can get kinda less than chummy sometimes - but this is serious shhiit we're dealing with and emotions are hard to rein in when someone questions our beliefs -

but you are so right that we are all in this together so to speak - at least when we choose to be part of this "family" -
Posted 7/24/2013 10:35 PM (GMT 0)
My opinion on medication vs. diet is that for each of us - it's different. Some may respond to diet, but it takes trial & error, lots of time & dedication. HOWEVER - most importantly in my experiences with digestive issues - it all depends on the "root cause" of your disease. For me the UC was due entirely to my bodie's immune system being very overactive. For other's it can actually be a food allergy issue that presents with an IgG mediated response rather than the typical IgE response that we are all more familiar with. An article that explains this for children is here: http://refluxrebels.com/The%20Mother%20of%20All%20Food%20Allergies.pdf

This is just what makes sense to me - as some people do have positive response to diet. I was not one of them :(
Posted 7/24/2013 10:52 PM (GMT 0)
Believe it or not, I sat here and read this entire thread!! Well, it actually took me a couple sessions to get through all the posts, but I DID get through it. It's very interesting to read all the different ideas/perspectives/thought processes etc....of others who are unlucky enough to have this awful disease.

So yeah, anything I could say has already been said, so I guess I don't really have anything to add. As most of you know, I am one of the "dumb" folks who opted for a permanent ileostomy without even asking if I'd be a good candidate for a J-pouch. I have many reasons for making the choice I did, and have not looked back or second guessed once since having my surgery. I'm happy and healthy....doing what I want, eating what I want and leading a completely normal life. I could not possibly care less who knows about my bag, sees my bag or what anyone might think of it or me. The surgery and the stoma saved my life. I may not have picked the most "normal" option, but I DID pick what was best for me.
Posted 7/24/2013 10:58 PM (GMT 0)
"For other's it can actually be a food allergy issue that presents with an IgG mediated response rather than the typical IgE response that we are all more familiar with"


that's the part I don't get - it seems like such a simple concept to understand - even for a dummy like me -
Posted 7/24/2013 11:02 PM (GMT 0)
Health forums are heavily self-selecting towards a certain type of patient, in my opinion: not being funny, but I don't think many of you are typical of the 'average' UC patient, just as I'm not typical of the 'average' Crohn's patient either. I wouldn't have dreamed of joining a forum just to talk about having Crohn's in the days when my disease was mild. I was diagnosed in 2000 and had regular internet access since 2001, but I didn't join HW until 2010. I'd lurked it for about a year prior to joining.

I have absolutely no doubt that if I'd found a med which worked, if my disease had returned to its former mild state, there is no way I'd be posting rubbish on HW right now. You'd have missed out on my sunny, beaming face for good: minor tragedy, I know.

There's also another type of patient who seems to gravitate towards health forums: those who fervently espouse the 'natural' approach of diet and supplements. As it so happens, I do think diet works in some cases, so I'm not here to say that diet doesn't work, it's a crook. But I will say that I've rarely seen anyone more evangelical than a true diet afficionado. I can't remember even one occasion where a person has gone round banging on evangelically about Remicade, rhapsodising about how it's cured them, and so on. I just find that a bit strange, since I know for a fact that Remicade has put thousands of people into remission. Just not me, that's all. The only place Remicade put me into was hospital, but that's another story.
Posted 7/24/2013 11:04 PM (GMT 0)
yup what, I don't quite understand your choice -

and I also know that I wouldn't have the nads to do what you did -

but I do understand that you did what was right for you, and that's really all that matters -

rock on !
Posted 7/24/2013 11:20 PM (GMT 0)
Robert K to your question many replies ago, I do not have the option for a jpouch I chose a perm ileo and I can go swimming. Someone explained to me that it keeps liquid in, why wouldn't it keep it out? That made the most sense.

As for the natural treatments and things like that. People have been using natural cures like seeds, nuts, plants all kindss of things made from things found in nature for thousands of years. Ancient Rome and Greece had very sophistcated medicine for their times. Many of the prescription medicines we use are derived from plants.
Some of the meds we use are far more dangerous than trying herbal remedies or diet. However, if you get to a point where those aren't working, then you need to use drugs, or surgery.
The main thing that botherss me about diet is that it takes so much away from the person. Some people just take dairy out, but others take out meat and dairy and sugar and gluten and I think wth is left to eat? And why give up all those things? To me it would be miserable to never eat another piece of cake or bacon! (Chips, cake and bacon mankind's greatest inventions,lol". Anyway it is wrong for anyone to push their beliefs on anyone else, or to claim one treatment is the only right treatment. Whatever keeps you healthy is right for you.
Posted 7/24/2013 11:20 PM (GMT 0)
@soystud - My choice to have surgery, you mean?

Although officially my surgery was elective, I also had to have it really. Remember what I said about Remicade putting me into hospital in my last post? <_<. Well, I don't know for sure if it was the Remicade, to be fair, but a month after starting it I was in hospital. An abdominal x-ray showed toxic megacolon. IV steroids kicked in and saved me from surgery that time, but it was the beginning of the end. I kept on having to be hospitalised and given more iv steroids, which meant in turn going back on the Pred again.

Basically, by the start of this year I was completely Pred-dependent. My body didn't respond as well to Pred anymore, I'd been on and off it so many times. On 40mg Pred the abdominal pain was gone, but I still felt basically unwell. That was the point I decided to book surgery: I either had the surgery or I stayed on high-dose steroids. That was my choice - and tbh it did not feel like much of a choice. The surgeon would have done surgery on me sooner if she could've done, but because I was not in immediate danger the decision to have surgery was down to me.

Anyway...! Rock on, too, bro :p
Posted 7/24/2013 11:24 PM (GMT 0)
Oh and as for being on here a lot, I am also a stay at home parent and my husband works out of town Sunday through Thursday, so as a general rule this the most intelligent discussion I get that doesn't involve chess or the game clue, my 8 year olds current obsessions :)
So I understand where soystud is coming from, although my son is able to do things for himself and does go to school. I can't imagine what it must be like to have to do everything for my child, it sounds like you are a wonderful dad!
Posted 7/24/2013 11:31 PM (GMT 0)
Yeah - I agree with summerstorm, you must be a wonderful dad, soystud. I hesitated to say anything, in case it sounded patronising. I guess I can't help thinking of my own dad by comparison, who can't even spend 5 minutes with his own grandchildren... He was a man who was entirely selfish and only did what he wanted to (and unfortunately I am much the same, in all honesty). I admire anyone selfless enough to care for somebody 24/7, even if it's their child. There's enough parents out there who, the moment their kids get a bit difficult, just don't want to know.
Posted 7/24/2013 11:33 PM (GMT 0)
I wonder what happened to the OP? I think we all scared him/her away! shocked

Anyway, whatever gets us all by and to a state of good heath: meds, diets, surgery, ect. Everyone had to do what's best for them and their condition.
Posted 7/25/2013 12:58 AM (GMT 0)
@Soystud~ You are completely correct....as long as we each find the treatment or surgical option that works the best for us as individuals, that truly is ALL that matters. If you wanted, I could try and enlighten you as to why I made the choice I did, but if you are of the mindset that NOTHING could make a "bag for life" the best choice, there is probably no point in trying to explain.

Funny thing is, every one of my friends and family totally understood and supported my choice, except for one person, who was worried that I didn't realize what I was getting myself into. She now sees that I DID make the right decision. My Mom even went to every surgical visit with me, did lots of reading online, and said she would've made the same choice as well.

How have you been feeling?
Posted 7/25/2013 1:07 AM (GMT 0)

UCwhat? said...
Believe it or not, I sat here and read this entire thread!! Well, it actually took me a couple sessions to get through all the posts, but I DID get through it. It's very interesting to read all the different ideas/perspectives/thought processes etc....of others who are unlucky enough to have this awful disease.

So yeah, anything I could say has already been said, so I guess I don't really have anything to add. As most of you know, I am one of the "dumb" folks who opted for a permanent ileostomy without even asking if I'd be a good candidate for a J-pouch. I have many reasons for making the choice I did, and have not looked back or second guessed once since having my surgery. I'm happy and healthy....doing what I want, eating what I want and leading a completely normal life. I could not possibly care less who knows about my bag, sees my bag or what anyone might think of it or me. The surgery and the stoma saved my life. I may not have picked the most "normal" option, but I DID pick what was best for me.

By read what she wrote, I can attest that UCWhat did indeed read the entire thread. lol Good job! I love reading stuff also.
Posted 7/25/2013 2:51 AM (GMT 0)
I am on here a lot and it's not because I have some kind of problem, I Just like to be here to help others and to have some sort of community in my life. I don't have a lot of friends or family and I don't "fit in" with a lot of people so I love HW and the people here on the UC board, I genuinely do. I also love having the opportunity to help people even though sometimes maybe I am unable to help as much as I'd like to.

I do believe we scared the OP away :)

I don't think we can ever bet on the cure coming in a few years. That reminds of my dad, he's always waiting for the next big paycheck. Something's always just about to happen but it never does. I've experienced that letdown first hand. You can only work with what's available now. If the only thing holding you back is the what-if in 5 years, that's not a good reason. Chances are, in 5 years, there will be one or two more options and that's all. I hate to say that, I wish I believed otherwise.
Posted 7/25/2013 2:58 AM (GMT 0)
hey what ! i'm doing awesome for an old guy - thanks for asking - so glad you are doing well also -

no need to explain the bag choice - I actually do understand your reasons - same ones I've thought about myself - you know as well as I, that when the world is good, you make all kinds of grandiose proclamations, but when the shiiiity hits the fanny, all bets are off - I truly don't know what I would do - all I know it that I WOULD do - like I said, I have responsibilities to  my family - their needs are always first and foremost in my thinking -

 

Post Edited (soystud) : 7/25/2013 8:24:55 PM (GMT-6)

Posted 7/25/2013 10:57 PM (GMT 0)
PSUDOC,

I see that your scheduled today to go in for your last step, I just wanted to wish you well with your surgery and to thank you for all the great information that you posted in this thread.
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