I guesstimate 2 months...

...before I start talking about surgery.

I havent seen anythjng about Vedo actually being available.

I have a nearby friend with quite a few Humira pens for me since she was allergic...

I could try it... or Simponi which I have more belief in... but really....

I crap myself everyday
I have pain... though less than before... I have it EVERY day
gas
Pain
diarrhea
mucous
URGENCY
depends
canceled plans
ruined pants


Someone on this board once said that if they crap their pants everyday... after 10 months... well 11 now... of treatment... they'd rather just get surgery...

So tell me folks... what am I to do?

You dont crap yourself atleast 1 up to 4 times a day.

Watch my new YouTube video once it uploads and you'll havr a better idea how I feel....

Just frustrated

Hi Katie,
I'm so sorry to hear you are still struggling. I can almost feel yr frustration. You've certainly had a rough go but I admire yr positive attitude, humour & yr ability to carry on; especially working.

The surgery decision is a tough one & I think should not be made in a state of frustration or depression (like me). But I don't think it's unhelpful to see a surgeon to consult or gather information. Then you can make an informed decision based on knowledge rather than emotion.

Deep breath, hang in. Your virtual friends here understand.

Depending on your view on surgery - it is really a personal decision.

That being said I do think you have more options to try (if you have it in you.. ) You have just just started Remi - so hopefully it will kick in soon. (are you one single or double dose? for every 4-6-8 weeks? i your insurance covering it all?)

Do you have a good GI who is on your side? or on the quick fix side.. - for them.. often surgery is the quick fix, but not always what s best for the patient!

Katie- I would feel the same as you do. I would not want to live as you are and if all the medications failed me I would have surgery. I refuse to have life pass me by because I feel like crap and I am crapping my pants.

I actually just found out that a co-worker has a bag. She is older and actually had colon cancer. I never knew it, could never tell.

It is a personal decision but I know what I would do in your shoes.

I feel for you. You're stuck between a rock and a hard place right now, where both decisions suck. I believe most of us would fully understand if you chose surgery at this point. You've been going through more than enough suffering. I also see the usefulness of ensuring you've truly given the meds their chance to work. I know you've been suffering a long time, but you've only just started to see an actual GI and get actual hard core meds, right? Did the GI give you an estimate for how long the remi would take to help your case? You can only take so much. Once you've reached your limit and feel like the difficulties related to surgery outweigh the difficulties of you UC, then yes, surgery is there for you. I've already started thinking about what I can and can not handle. My opinion is I could handle the after effects of surgery (pouch or bag) more than I could handle being in a constant state of extreme illness where I'm missing out on life.

We're here for you. Stay strong.

Obviously this is just my opinion, but I think it is waaaay to early to consider surgery. Ill admit, I am biased because Id pretty much rather die then get surgery, but my following points should stand regardless of this bias.

1) You are only just starting remicade. In many cases, it can take up to 6 months before you start to feel its full effects

2) As you said, you still have Humira and Simponi to try

3) There are many other non-medicinal supplements you havent tried that have been shown to be helpful to some people. Here are a few that come to mind: wild oil of oregano, VSL#3 or other probiotics, edible aloe vera gel, slippery elm tea, chamomile tea, and marshmellow tea.

4) You mentioned that urgency is one of your main concerns, but it doesnt look like you have tried enemas yet. They suck, trust me I know, but they do help to deliver large doses of medication to the rectum which is the source of the urgency, so that could help with that issue.

5) There are soooooo many potential new drugs/therapies that are just around the corner! Vedolizumab should be approved in about 9 days, Tofacitinib could be approved as early as 2016, and an anti-MAdCAM antibody therapy is currently under investigation and preliminary data is showing it to be as effective as Vedolizumab, so it too should be approved in the upcoming years

6) There are a TON of clinical trials that you could take part in that may give you new options before considering surgery.


Basically, my point is that there are so many things out there that you havent yet tried that may prove to be beneficial to you. If you feel like your at the point where you just need to get it over with, by all means, get the surgery, I just dont want you to think "if only I held out a little longer".

I would really consider surgery.....cropping your pants everyday is unacceptable, and obviously the drugs aren't working, so.....I would go for it, you will feel so much better

quality of life, Katie. Your life. Your decision.

And don't compare yourself to others to deny yourself the RIGHT to be pissed that you're not well. They're not a measuring stick for your situation.


I'd have had my colon out looooong before this. No crap.

Oh, and for those who say it's OK to crap your pants 4 times a day or that it's too early to consider surgery....they're not in YOUR pants..

Give it an allotted time limit and go from there.

q

Oh Katie, im sorry you are dealing with all this bull for this long...it's too much and you are a very patient person for putting up with this for this long.

I think that only you can decide when enough is enough. However, you only got proper treatment so very recently so it hasn't had a proper chance to kick in. Are you feeling any improvements on remi?

Have you considered or are you willing to give FT a try? Personally if i were you i would only try one more biologic if remi fails, then i'd do FT. No point trying too many biologics if the main ones with high rates of success do not help you.

Oh and iPoop, thanks for the links. I went on the blog and this is an even more recent post from bootstrap/ronnilee:
ronnielee-fightingforit.blogspot.com.au/2014/03/serious-about-sibo.html?m=1
Tbh i was shocked when i read this: she went thru surgery and all that and now she has "cuffitis" and has few ulcers in her pouch (apparently not crohns, and expected finding as the small intestines are not designed to hold stools!). And now she is doing the SCD diet. Thats frustrating to do restrictive diets even after surgery.
I hope that she is not a "usual" case of j pouch...?

I can't tell you what to do, but I think if I were in your situation I would be going the surgery route. You are very brave to have been going through what you have for so long. I don't post a lot here but I always lurk and I am always amazed at your positive attitude despite everything. It encourages me to stay positive.

Nobody can tell you what to do, katie. It's my belief that surgery is recommended far too cavalierly sometimes, but you have actually been given quite a balanced range of views here.

All I can say is, surgery was the worst thing I have ever had to go through in my life but I think maybe I needed to go through this hideous, awful thing in order to be able to face up to the hideous, awful thing that is called my life. I really dunno. I just dunno. Surgery sucks, but crapping your pants every day sucks. Personally, though, I think you still have quite a few medical options left to try, including giving Remicade more time. It seems to take longer to work in UC than in Crohn's, so there is still some hope for Remicade left. And for god's sake, get on the rectal meds if you have seriously never tried them: they are tailor-made for treating rectal inflammation, the prime cause of urgency.

Only on this board can being mildly critical or questioning about surgery = hostility.

It's so boring and wearying to deal with. No sense of balance at all.

Edit: Thanks Pluot and Dude, though, for stirring it up. There always has to be someone.

Post Edited (NiceCupOfTea) : 5/11/2014 4:46:58 PM (GMT-6)