It's all coming to a head...

Your fears about surgery are valid; all of us who faced surgery questioned our decision and our outcome. I'm 10 years post jpouch surgery and can honestly say that life without a colon is way better than life with UC. It's not perfect but for me it's given me a predictable life and I can engage in long distance hiking (100-200miles) without fear or concern. Here's to hoping you don't have to go down that path.

Sue

richochet96,

I totally hear you on the 'struggling a bit with having a decision forced on' you issue. It sounds like you have had a hard time of it recently too--hospital, steroids, etc. It is scary when you realize all the drugs that are supposed to help just aren't helping enough. Of course you are feeling down, you don't feel well, the steroids are making you feel even more weird, and the drugs aren't working.

I am in a very similar position, I am one drug, most likely Cimzia, away from surgery myself and I am freaked out. Depression about all of this has definitely set in for me as well, sometimes panic about what the surgeries entail, and sometimes a rational thought about how much more predictable my life will be as well.

Let yourself get used to the idea of surgery, educate yourself on it so when you talk to your doc you have already processed some of the info. And guess what? The disease isn't going to win, you are going to win when you get rid of that colon and can move on and live your life.

I think it sounds normal to be feeling this way. The prospect of surgery and the recovery is very scary. Remember, too, that prednisone can make the lows much lower. It definitely affects your mood, and you ability to think clearly sometimes. It is hard to deal with major life decisions at such a time. I agree with InSoFla, that your might want to try some of the alternative treatments that some on this forum are having success with. I'm not sure how you are feeling symptoms-wise at the moment, so I don't know if you feel you can wait to see results from any of these. It might be worth it if something works, or so you can at least believe that you did all you could. This doesn't sound like an easy decision at all. Keep us posted on your progress.

First, do not think that having surgery is losing, or letting uc win. Its the opposite,its literally taking that colon to the trash! Getting your life back, that's the ultimate win!
Surgery isn't pefect recovery is hard and it hurts. Its a har thing to get used to at first and there is a big learnig curve. But after you get it worked out its so totally worth it! 4 years out (I chose a bag) and I'm doing everything I wanted, and when I wated, not when uc would let me.
People who still have problems are usualy people who were misdiagnosed and still have crohns or people who had surgery where part of the rectum was left. Sue can explain it better, but if its not done peoperly it can come back, that only applies to a jpouch. Hoever poor stoma placement can be an issue with a bag so the absloute most imporant thing is to get a good surgeon and get a good stoma!
I rambled, lol, sorry! Anyway good luck with whatever you choose!

richochet96
I feel your pain.  I and several people on this forum have faced that decision of surgery.  I too had failed on all medications, Cimzia was next, after Humira failed me.  I have personally spent thousands of dollars on these drugs that did not help me.  However, cutting out an organ is not the ultimate answer, especially if there is no indication of cancer.  Try to excaused all possible avenues first, there is alternative medicines.  

It is a several month process, but it will get you on a healing path. 

For me I believe I had a over growth of yeast....my tongue was white even after brushing my tongue and teeth.
If you don't think you have a over-growth of yeast I would go skip to number 2, however an imbalance of yeast could be an underlining problem to UC (but not the only problem).

Option A.
Start:  VSL#3 probiotic
1.  Started Nystatin an anti-fungal medication.  + diet of elimating gluten, sugar, dairy...mind you this is for a short amount of time to get the yeast balanced out in your system.  I did this for 2 months.  I ate rice, cooked veg, chicken, duck, turkey and fresh salmon fish or fresh water fish.  Drank lots of water with a little lemon twist.
then
2.  Started LDN, oral with a hypoallergenic filler 4.5mg.  Got this from a regular MD.
3.  Supplements of psyllium seed powder not the husk...this formed up my stools and stopped the bleeding.  It's a good anti-inflammatory supplement and has butyrate acid in it, heals the colon.
4.  Other supplements as well, slipper elm, aloe vera juice, vitamin D, l-glutamine...all these help, but your body needs to be able to absorb.  (for me the LDN plus psyllium seed powder...is getting me better and quickly...and now able to absorb other nutrients.)

Option B:
Combo antibiotic therapy, it is listed on the forum here.  Many people have gone into remission with this treatment.

Consider the other options that InSoFla have suggested above.

We want to give you the hope and support you need to get through this.  To give you other avenues and hope for getting into remission, and feeling better.

I want to thank all of you for your posts. It's very nice to hear your success stories from those of you've who've had operations. It's certainly given me a lot of encouragement and courage.

To cut a long story short, I was discharged from hospital since my last post and then needed to be re-admitted. Oh dear, what a battle. Anyway, my UC has settled once again after more IV steroids. This time however I've simply had enough of all the drugs and diets and alternative therapies. I really have tried nearly everything, but for me unfortunately I think my UC is too severe and overall disruptive to my life.

I'm very lucky in that I'm now sat writing this post the day before my operation in one of the top colectomy clinics in the UK. My doctor pulled some strings and got me in here and I couldn't thank her enough for that as she really had to push for me - needless to say the first surgeon I saw scared the life out of me and was talking about a 12 month recovery until the next surgery and he also refused to do anything but open surgery.

With these guys they plan to do the pouch in 3 steps over the next 6-8 months (if everything goes according to plan) and they think with me being relatively young and healthy (27) I should handle the healing process well.

Anyway, I really look forward to joining you other guys that are living disease free, so fingers crossed I'll be posting here again soon with some good news on my progress.

Thanks again for all your support everyone, you've no idea how much it's helped me to reach this decision and feel like it's the right thing to do.

richochet96,

Good luck, sounds like you're in very good hands.

And I hope everything goes smoothly and you'll be up and about in no time.

Wishing you the best.

Wishing you a speedy recovery! It's only up-hill from here!

richochet96,

So glad all went well for you.

Good luck with the next steps.