How do you know when it's time?

I knew it was time when I became steroid dependent and no longer had a life. I flared during a trip to Las Vegas and found myself in the worst possible place to be-- an airplane. I tried to go on a camping trip while flaring and had many accidents because there was only one bathroom. I used to be a marathon runner and had to give that up. The only place I run now is to the bathroom. I would cry every day. It was no way to live. I can't work as a nurse with UC. BUT that is all going to change. My surgery is tomorrow. I have never been so excited to remove this monster from my body. Surgery is a personal decision, but I thought I would share my breaking point.

bostwis1-
All the best to you tomorrow with your surgery. I was so happy that morning going into surgery. (I know, weird huh?) But I knew it was going to be the end of UC for good and that was such an awesome feeling. Sending healing vibes your way! :)

I am trying to get to the bottom of the disappearing post. I did not remove it and I am sorry that it is gone - the whole point of the forum is to be able to express our opinions and support others and hearing only one sided information doesn't help anyone when confronted with a tough decision.

Caligirl, I have only heard of one person who was diagnosed with Crohn's after surgery - of course there are others and it's definitely a concern but it's not common. The key is to make sure you've had every procedure to ensure your diagnosis is correct before having surgery. Also, make sure you work with an excellent surgeon. This surgery is difficult and you don't want to work with a surgeon who is not familiar with the procedure. Visit www.j-pouch.org and speak with people who have been through the procedure, that's where you will probably get the most real, reliable feedback on surgery. Healingwell is a great resource for illness treatment, we have an amazing ostomy board where you can gain a ton of information but it's not primarily focused on j-pouches (if that's what your goal is).

Have you tried any antibiotics for your UC?
Would you consider alternative treatments like fecal transplant?
Are you in the theraputic range for 6mp?

Have you consulted with surgeons? I feel like if you're on biologics and having symptoms, it's not a bad idea to consult. You have to think about what's next because I haven't seen too many people have long-term success with biologics. After speaking with some surgeons, you may feel more confident about the decision to have surgey.

Hi CaliGirl! I'm the one Marianne and Sue have been telling you about that had surgery with Dr McLemore. I have seen one doctor and every colo/rectal practice/facility in San Diego. I literally ended up with Dr McLemore b/c the surgeons at Scripps wouldn't take my insurance & I am SSSOOOO grateful that things ended up the way they did. Dr McLemore is by the far the kindest, caring and extremely talented doctor/surgeon I have met through my whole ordeal. I can tell you that I waited until it was almost too late & had my GI at Scripps not called me to tell me that if I didn't go to UCSD for surgery right away I would die - I would have done just that - DIED. I can tell you that if the meds are not working as long as they should be then you are at the point of being ready for surgery. I was on Remicade and experienced only one good dose and after that it didn't work so well and then it gave me BOOP - a form of PNA which required surgery to dx. Once I got off all the meds for the PNA I went into a steep decline towards death. I was in and out of the hospital, ended up with a PICC line doing self administered solumedrol at home until I developed steroid myopothy... every new extreme seemed normal to me b/c I was in denial about surgery and avoiding it all costs. I wish I had not waited so long b/c had I been somewhat healthier I could have had 2 vs 3 surgeries. Tomorrow is my 2 year ass-iversary & I am so happy I had the surgery even didn't have much of a choice at the time. Dr M said I had 2 choices - surgery or death. At that moment in time, death would have been preferable. I hadn't eaten in weeks (aside from rice, plain pasta and white bread), I was on 200mg of solumedrol a day, chewing percocets and living in the toilet.

If you want to talk to learn more about Dr M and UCSD I'd love to brag about her! She is just awesome. I was lucky to get her b/c she and UCSD are the only doctors in CA to do these surgeries robotically which provides a quicker recovery and a WAY better outcome. Some of the issues lapro and open j-pouchers have I don't have. I have never had one accident even in hospital after take down, I never get butt burn (unless I eat a jalapeno stuffed burger at High Dive), I drink beer and soda and eat almost whatever I want to. Fast forward two years and I am healthier and happier than I have been in YEARS. I travel a lot for my job and I have no issues with my pouch. Granted I don't eat specific things that can affect the output but I can eat like a normal person and not worry about the pouch. At first I was pretty nervous about traveling and I took lomotil and tincture to shut the bowels down, but now I don't bother. I imagine working in an ER you would find life better with a jpouch! You have control and you can manager your food intake around when you have to work once you get used to the pouch and how it will react to food. Keep in mind that everyone is different, but I believe that robo-asses are the best. Dr M even has one patient that is a peds resident at UCSD and he is back at work a lot quicker than I was after take down.

Sorry to go on and on but when it comes to bragging about Dr M I find I cannot stop! If you want to I can send you an email with my contact info.

Below is a video Dr M did on the robotic surgery:\http://www.youtube.com/watch?v=XeaLD3DvMVc

Hey Eve-
I never knew about this that IBD that can show up after surgery in other areas of the body. My surgeon told me that couldn't happen (unless you had CD int the first place). I guess they are finding out more now about IBD and not all dr.'s are on board. What a complicated disease. Either way we are still better off without our rotten colons! :)

well i am half way through the steroid taper and am now coming off remicade. so far my symptoms havent gotten worse so soon i wont have to worry about the effects from steroids or remicade anymore.

I had a permanent ileo (the bag) four and a half years ago. I chose that because I didn't want to take the small chance of jpouch problems. I'm soooo much happier! I wasted so much time on dngerous drugs. I never tried changing my diet, I wasn't going to give up the few things I could eat. It might have made me better, but I didn't think cutting all that out made for much of a life. There was already so much I couldn't eat. I didn't try all the drugs, or all the remedies. If I did try something and it workd I was constantly waiting on the othershoe to drop and it to fail, or for some horrible side effect to develop. It was miserable not being able to take my kid to school, or walk up the driveway, so after 8 wasted years I was like that's it, this colon goes! And I kicked that thing to the curb! Got my life back and beat uc!
Don't ever think that surgery is giving up. And don't let the possibllity of jpouch failure that would lead to a bag keep you from surgery.
Good luck with whatever you decide

Caligirl83-

Just wanted to let you know that I answered your post in the other thread on the ostomy forum.

Only you can know when you are ready for surgery and remember that you don't have to try every last thing if you don't want to. The choices we all make in our IBD treatments are deeply personal, based on our own values and can be very difficult to explain and defend to others. If it is what you want, it is what you should do.

Regarding the posts on gluten and diet, I can relate to your thoughts on not wanting to go that route. I did have a positive blood test for gluten intolerance at the time of my UC diagnosis and went on a strict gluten free diet for over 4 years before my surgery. It never did anything to relieve my UC symptoms except make me a little less bloated sometimes. My disease got worse despite the diet. I am still on a strict gluten-free diet because I know that my body produces antibodies to gluten which isn't a good thing, and I don't want to develop other problems down the road. Still, living with the diet is a big change and has impacted my quality of life some. I was never interested in adding even more dietary restrictions to my life on top of that, such as trying the SCD. I like being able to eat a variety of foods, the time/convenience factor of fairly regular diet and the fun socializing that comes with eating out, dining on travels etc. Many people are very happy with their decisions to be on alternative diets like the SCD though and have amazing results. To each their own. You need to know yourself and what you are willing to do and it is different for everyone.

I also was afraid I might have Crohn's even though all my colonoscopies over the years and even a genetic test my Dr. ordered all pointed to UC. When my pathology report on my colon came back after surgery, that also pointed to UC. Even though my doctors were very confident that I had UC, I still think about about the possibility of Crohn's on occasion since I don't think it can ever 100% be ruled out. Still, one can't constantly be worried about all the "what ifs" of the future. For me, my colon was making me very, very ill and I had to get over the fears and uncertainties of what could happen in the future and deal with what was causing me to be extremely sick at the present moment. If something else happens down the road, I will face it at that time with the help of my docs.

Oh yeah, and I saw your comment about the beer below and I just posted something about that on my blog over the weekend. I have a permanent ileostomy though... not sure if it is different with a j-pouch. http://ostomyoutdoors.wordpress.com/2011/12/17/cheers-alcohol-and-the-ostomy/

OK notsosicklygirl -thanks
I'll repost if I could only remember what I said :)

Caligirl83 said...
Indycat23-

You were just diagnosed with UC this year and you are already on a strong regiment of meds. My focus would be to get well and get in the best shape you can and plan for surgery. It took me three years before I had to resort to Remicade. I surly have had my phone with prednsione and I never want to see those days again. The sicker you are when you go in for surgery the more likely you are to have a long recovery and experience pouchitis. I know I am going to have my surgery in a couple months, but like any normal person I am nervous about it. If there is anything I can help you with or any questions please ask away. It seems like we have had a similar history with UC.

Thanks for the offer to help!  I'll be following your experience going forward since our cases seem to be pretty similiar.  They are increasing my Remicade to 7.5kg from 5kg.  I'm hoping this buys me some time until summer to interview surgeons and decide on the best course of action. 

Yep:
The gist of what I was saying is that many surgeons paint a different picture about life after surgery that doesn't quite line up with many patients experience.
" The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."
that being said -surgery can be a life saver and it's just such a personal decision. Be very careful, do your due diligence, research it, advocate for your own health and make the best decision you can with ALL the available information.

http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html

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Post Edited By Moderator (notsosicklygirl) : 12/19/2011 4:29:53 PM (GMT-7)

beatUC: I find the research study interesting but I wonder if the results would be the same if the study were more widespread. That study was of a very small, specific region where the people all had surgery at the same center (probably with a handful of surgeons?).

Even with the results, I find that the author was very fair in saying that it is still a good option depending on the individual circumstances. While I don't thinks urgery is perfect, I do think there are some situations where it is 100% the best option. It's not a cure, just an option.

Mikeyy, I hope to see more about this new medication - it may be a long time before it is FDA approved in the US. :(

MikeyyWho said...
i forgot the name of the company. maybe novacs or something like that but they are located in france and are currently in the final stages of developing a different kind of drug that utilizes antibodies in the immune system to combat the disease and so far 90% of people in the clincal trials have achieved remission with no side effects. it was on cbs health new york radio.

That's pretty awesome. I'll have to start researching it.