Losing hope, need encouragement...

I am usually a very strong and optimistic person when it comes to my health, even in the worst of times, but today I just lost it.

I am pretty much out of options, and I don't want to do this anymore. I'm so tired of these unreliable treatments, having to watch everything I eat, not being able to have any of my favorite foods, coffee, alcohol, chocolate, etc... feeling guilty over every time I "cheat". I have been on so many medications this year and have been through hell dealing with the side-effects and reactions. I am trying so many things at once - diet, drugs, supplements, meditation - I have no idea what is helping and what isn't. Right now, nothing seems to be working - I am in physical pain every day as I watch the lining of my colon come out in chunks, and I don't know how to make it stop. I have to start work on Monday - teaching high school students. We'll see how that goes.

Mentally I'm ready for surgery, but as each day passes, this path becomes more real, and I don't know if I have enough emotional strength left to handle everything involved with the whole process. Today as I sat on the toilet and looked down at my tummy - the place where the stoma would go, it was like a shell shock. I haven't had much to eat the last few days, and as I tried to make myself a sandwich with my gluten-free bread, I started crying and put it back in the fridge. Food has come to equal pain. I decided I needed to prepare myself mentally for what to expect, so I started looking at photos online of ileostomies, and I continued crying. In fact, tears are still rolling down my cheecks. To be honest, the photos make me sick to my stomach, especially if I picture it on ME. Even though I would opt for a J-pouch, I would have to deal with the ileostomy for six months while the new pluming heals. Not to mention the recovery time of having my abdominal muscles sliced in half preventing me from being able to work on my fitness goals. We're talking like a year's recovery time if you include both surgeries.

I'm sorry - I am just so ready to be done with this but don't know how to get there emotionally.

I have an appointment with a UC specialist at UCSF later this month, and I have already requested a referral for a consult with a really good, experienced colorectal surgeon there as well (Dr. Varma); just waiting for the paperwork to go through. I guess I will just try to deal with my symptoms as best I can and take it one day at a time until I can sit down with the experts. Hopefully I will feel better after talking with them.

Okay, done venting... Just needed to "dump" I guess (pun intended). Thanks for listening; I already feel a bit better just getting it all off my chest.

This disease can be so overwhelming at times. It can also be incredibly frustrating to have to put your fitness goals on hold. Prior to UC, I could run a mile under 5:30 and now I would struggle to run around the block.

It sounds like you are at the point where surgery is the next logical step. It looks like you have tried different meds, biologics, diet modification. No one can say you have not given it your best shot.

Even though surgery will put your fitness goals on hold for a year, at least you'll be able to resume the achievement of your goals once you are healed. You have to ask yourself if it is worth chasing a treatment that will put you in remission. Will the remission ever come or do you just keep putting your life on hold?

Personally, I'm not mentally ready for surgery. I've only been diagnosed since early last year and feel like I need to give it more time before surgery. I'm giving Humira a try since Remicade became ineffective for me. If I can't get in to remission within the next year, I'll choose surgery too.

Good luck on your decision!

bootstrap said...
I am usually a very strong and optimistic person when it comes to my health, even in the worst of times, but today I just lost it.

I am pretty much out of options, and I don't want to do this anymore. I'm so tired of these unreliable treatments, having to watch everything I eat, not being able to have any of my favorite foods, coffee, alcohol, chocolate, etc... feeling guilty over every time I "cheat". I have been on so many medications this year and have been through hell dealing with the side-effects and reactions. I am trying so many things at once - diet, drugs, supplements, meditation - I have no idea what is helping and what isn't. Right now, nothing seems to be working - I am in physical pain every day as I watch the lining of my colon come out in chunks, and I don't know how to make it stop. I have to start work on Monday - teaching high school students. We'll see how that goes.

Mentally I'm ready for surgery, but as each day passes, this path becomes more real, and I don't know if I have enough emotional strength left to handle everything involved with the whole process. Today as I sat on the toilet and looked down at my tummy - the place where the stoma would go, it was like a shell shock. I haven't had much to eat the last few days, and as I tried to make myself a sandwich with my gluten-free bread, I started crying and put it back in the fridge. Food has come to equal pain. I decided I needed to prepare myself mentally for what to expect, so I started looking at photos online of ileostomies, and I continued crying. In fact, tears are still rolling down my cheecks. To be honest, the photos make me sick to my stomach, especially if I picture it on ME. Even though I would opt for a J-pouch, I would have to deal with the ileostomy for six months while the new pluming heals. Not to mention the recovery time of having my abdominal muscles sliced in half preventing me from being able to work on my fitness goals. We're talking like a year's recovery time if you include both surgeries.

I'm sorry - I am just so ready to be done with this but don't know how to get there emotionally.

I have an appointment with a UC specialist at UCSF later this month, and I have already requested a referral for a consult with a really good, experienced colorectal surgeon there as well (Dr. Varma); just waiting for the paperwork to go through. I guess I will just try to deal with my symptoms as best I can and take it one day at a time until I can sit down with the experts. Hopefully I will feel better after talking with them.

Okay, done venting... Just needed to "dump" I guess (pun intended). Thanks for listening; I already feel a bit better just getting it all off my chest.

You are right on the bag stigma/fear. I wouldn't be able to deal with a bag long term either. It's so UGLY man. I would 100% opt for a J pouch also. People don't seem to mind the bag because they are healthy now and all. I don't care, it's freaking ugly, I would feel like I'm one of those old geezers, anyways I could ramble on about the bag but really, I don't need to, it's self explanatory.

However, on the positive side, you can do your surgery laporoscopaly in which they don't cut you. You will have three little holes created and they fix you from there. Once you heal, some people don't even see the scars anymore.

Thanks, everyone. The only two things I have heard of but not yet tried are Humira and LDN. Part of me wonders if I should wait and try these first. But I haven't actually heard of anyone who was in remission for longer than, say, a year and a half on these drugs. I don't have much faith that they will work for me anyway since nothing else has, and the evidence for either of them is not all that promising. Regardless of whether or not LDN or Humira could help, either way it's more drugs, more symptoms, more side-effects, more watching what I eat, drink, do, always "looking over my shoulder" so-to-speak since this UC monster sneaks up like a sheisty b****.

Just "thinking out loud" so to speak. It's nice to have a sounding board.

So the only way I can be done with this for good is surgery. Might as well get it over with. Somehow I don't think my budding relationship with this very eligible bachelor I'm dating will survive the process - it is still in the fragile "getting-to-know-you" phase (only been seeing each other for a few months), and I don't want to saddle him with this crap (literally) so early. I haven't really let him see the reality of the UC yet. Saying "I have a chronic disease" is very different from actually witnessing all the nastiness that comes with it. I think anyone would have a hard time feeling "sexy" with a poop bag hanging off them... but he gets grossed out easily, and I can't imagine him being able to overlook the poo coming out of my side. Oh well. If he can't hang, then he is either just not that into me or too much of a pansy for me anyway. I guess there's only one way to find out. Just waiting on that referral....

Thanks, Marianne, you have been a big help and so reassuring. I also read (at the ostomy forum) a strategy that summerstorm suggested to another girl who was self-concious about the look of it. It was to wear a belly band (like pregnant women use) to cover everything; that way no one else has to see any of it unless you want them to. Brilliant - I could deal with wearing one of those during "intimate" times for a few months until I heal up and get the drop down surgery. This forum is so helpful - I am thankful for all of you every time I log on.

Hi bootstrap,

I am a little late coming into this conversation, but I just wanted to say I have been exactly where you are emotionally--trying to wrap your head around the idea of surgery. That's how I spent last fall, seeing if Cimzia(my 2nd TNF blocker in a year) would work or I would have to get surgery. It was so mentally exhausting, not knowing how I would physically feel everyday and knowing I might need surgery. It took me a while, but mentally I became ready for it, knowing as others hear have said that you actually get excited for it and know your quality of life overall will be so much better. I looked at all the websites about j-pouches, looked at the ostomies forum and read everything I could about it and eventually I was okay with it. Crazily enough for me, Cimzia did help for awhile and I have not had surgery(talk about a roller coaster of emotions!). Good luck to you, whatever you end up doing and I love your blog by the way!