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What was your breaking point for surgery?

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Posted 11/8/2014 12:44 AM (GMT 0)
Hi! This is my first post for advice. I've had a rough year with my UC and am on my 3rd medical leave in 10 months. Last December I had pancreatitis followed by c-diff followed by the worst flare since my dx which required 3 separate hospitalizations. After I was discharged, I had a blood clot and found out that I have a clotting disorder. When my IV access started to be a problem, I switched from remicade to humira and developed neuropathy in my feet. I'm back on remicade but haven't felt right GI-wise since my last humira injection which was 6 weeks ago. I have nausea, loss of appetite and 10 lb weight loss (not overly upset about that since I never dropped my prednisone weight). This week my bowel movements have been so painful (you know the kind where you are convinced you will poop your rectum out) and unpredictable that I am taking more time off from work and seeing a new GI doc on Monday. I am discouraged and have little interest in trying new drugs with potential side effects that could keep me from working. I would like to know what brought each of you to your surgery decision.
Posted 11/8/2014 1:58 AM (GMT 0)
Welcome Platinumpixie!

I stopped responding to my medications and couldn't get into remission. I tried Remicaid, then Humira, then Simponi. Nothing worked. I was going to the bathroom about 20 times a day, and sometimes I didn't make it.

Finally I said, no more. I went to see a surgeon, he told me that it was time. And that was that.

One of the best moves I ever made. I love my life now. :-)
Posted 11/8/2014 2:33 AM (GMT 0)
My flare up lasted 2 years, remicade and humira didn't help, I was off for that whole two years. I had an Ileostomy surgery July 18th. Went back to work last month. Feel great, no regrets and I cannot get a reversal. But there is no pain and I don't go to the bathroom 20-30 times a day anymore or have accidents.

There is no way in hell I would go back even if I could...

My only problem is after doing the surgery and having my pathology checked out twice they suddenly can't decide if I have UC or Chrones !! How screwed up is that. They were originally sure I had UC

Post Edited (Dashin) : 11/7/2014 8:26:48 PM (GMT-7)

Posted 11/8/2014 3:08 AM (GMT 0)
The main reason that brought me to surgery was the failure of all the meds. But the last straw was the incontenance. I couldn't leave my house without having an accident. I had zero quality of life. I'm Extremely happy with my j pouch. It's been a God send! Best of luck with your decision.
Posted 11/8/2014 4:45 AM (GMT 0)
Hi, I had surgery September 2013 because of being on medication and it not working. Had lots of obstructions and prednisone did not do anything. The first few months after surgery were rough, but since April or May of this year have been feeling so much better. No pain. I have joined a synchronized skating team in September and never ever thought I could skate again. If you decide to go for surgery you will feel so much better and you will live, your life. Take care and I wish you all the best in whatever you choose to do. Sue
Posted 11/8/2014 4:58 AM (GMT 0)
After years of not responding to any form of treatment, then failing on steroids and biologics, I really didn't have any choice - when your doc tells you that you won't live to 40 the way things are going, you kind of have to jump into surgery. It was the best thing to have happened to me and my life is as normal as I could expect.
Posted 11/8/2014 5:43 AM (GMT 0)
Thank you for the feedback. I've been following the message boards for IBD and it seems that most are happy with their decision for surgery which is really encouraging. I know I'm not as sick as many of you have been but UC is majorly interfering with my life. My appointment on Monday is with the guru of IBD in my region so I will discuss this option with him.
Posted 11/8/2014 9:07 PM (GMT 0)
I got a 104.6 fever while I was on cimzia (third biologic)....it was really scary being on that and prednisone -- two immune suppressants that have fatal infections as possible side effects.... took a few days to get the fever down.

That was the last straw after having a painful skin condition (cutaneous crohn's -- boils all over my butt), an eye problem that left it hard to be in light, as well as erythema nodusum all over my legs.... and of course the usual 20 bathroom trips w/bloody diarrhea.

When I asked my gi if it was a good idea, he said it was a good idea two years earlier....

It was easier for me emotionally because there was no doubt I was ready, but it was harder physically than it'd have been if I'd have had the surgery before I was so so sick...

Good luck It's a hard decision, and it has to be your own.
Posted 11/9/2014 3:35 PM (GMT 0)
For me it was after 20 years of U/C when all the heavy meds were no longer effective and the final scope said my colon was like hamburger for the first 2 feet from the rectum up, that we decided to go for it. All went well with the surgery although it does take time for the butt to heal. In the 14 years since surgery it has been a blessing, no more endoscopes and the horrible "clean out" drinks, no more suffering the pain, bloody diarrhea and inevitable accidents. Good luck, I am sure you won't regret it should you go for it.
Posted 11/9/2014 7:56 PM (GMT 0)
I didn't have a "breaking point"....In 2012, I ended up with a perforation and emergency surgery. Now 6 weeks out and recovering from a total protectomy and permanent ileostomy, I can honestly say that I am very sad that I wasted 20 years thinking that if I changed my diet or tried a new medication or sat in the moonlight on the 14th day of each month facing north (just kidding) I could beat Crohn's. I realize now that I was trying to convince myself I was feeling better when really, I was achy and sore and malnourished. I am sad that I didn't consider surgery sooner. Perhaps my life would have been different, perhaps I wouldn't have missed out on so many activities that I really wanted to go to.

Surgery has changed my life. I can't wait to be healed and get back to living. Now when I read the UC and crohns forums, I see people where I was and it makes my heart hurt for them. Everyone has to make this journey on their in terms and make decisions based on what is best for them at this time in their lives. I really wish you all the best in your decision making process. You will find all sorts of advice on here. There is an amazing amount of knowledge and experience here.

Kelly
Posted 11/10/2014 8:05 AM (GMT 0)
To undergone a surgery was one of the very hard decisions I made after I was diagnosed with Chron's disease 10 years ago. But my doctor said it was only the only option I had to totally treat the disease survived from my condition. I was already losing hope at that time, but with the help of my family and the people around me, I survived it. I had my colon and appendix removed and I have been living with stoma for 10 years now. I'm very thankful that despite my situation, I was given the opportunity to live life until today.
Posted 11/10/2014 2:18 PM (GMT 0)
My disease was refractive; medication didn't work, and most importantly I wanted my life back. The last 6 months with my colon I had no quality of life.

Sue
Posted 11/10/2014 2:59 PM (GMT 0)
Sue, you hit it on the head. No quality of life. Yup, me too. Even before my emergency surgery, I was planning in my head how I was going to fit my surgery in between our trips that we had planned.

My quality of life is 1,000 times better now. I love it!
Posted 11/10/2014 11:48 PM (GMT 0)

Larasmom said...
I wasted 20 years thinking that if I changed my diet or tried a new medication or sat in the moonlight on the 14th day of each month facing north (just kidding) I could beat Crohn's.

Kelly, laughing reading this, but I so, so relate. I was convinced that I didn't really have a disease and it was just a diet or stress puzzle to solve.... until I realized that most of my stress came from being sick all the time and always having to run to the bathroom....
Posted 11/11/2014 1:41 AM (GMT 0)
Blue, I can't tell you how many potions, powders, healers, lotions, herbs, needles, medications I went thru in 20 years. I too tried to convince myself I wasn't THAT sick and didn't need my meds because the lasted potion was "helping". Let me tell you, emergency surgery, on life support in an induced coma for a week wasn't anything I had planned but it was a wake up call to me that Crohn's IS a very serious disease and it just about cost me my life.

I am much happier now sans colon, rectum and with my happy little ileo. I can't wait to see my GI next week, I am actually looking forward to hearing what he has to say! At least we won't be discussing how much my disease has progressed in the last three months.

I am not niave enough to think that I won't need some sort of a medication but I do know that it won't be anything like what I had to take before. I have three doses of Humira still in my fridge. My hubby keeps asking what I am going to do with it. I just tell him as long as it's in my fridge, I am not going to need it. Fingers crossed that's the case for a long while!!!!
Posted 11/11/2014 4:23 AM (GMT 0)
Unlike many, I refused the biologic drugs. My dad died with Multiple Myeloma and once they asked if I had ever had that, drugs were no longer an option in my mind. My insurance would only have paid a small portion and I knew I would be in the poor house if I chose that path. Along with no guarantees, and most likely the same outcome in the long run... surgery.

I was, for the most part, incontinent for the last few months of my previous life with my colon. I had a stricture in my rectum and each time it was stretched, it added to my incontinence. I was in my late 50's and had 3 wonderful grandchildren and was missing out on spending time with them. I had no quality of life and that was the breaking point. I needed to reclaim my life. I was also very, very ill by this time.

I found this board and educated myself on every aspect of what my new life would be like if I chose surgery. I knew more going in than the nurses I had in post-op. I have never once regretted my decision and am forever grateful to the kind folks here who shared their stories and gave me everything I needed to help make that informed decision.
Posted 11/11/2014 5:40 AM (GMT 0)
I met with new GI doc who specializes in IBD and he was really good. He explained that sometimes if there is proctitis going on, it manifests with nausea so he prescribed zofran 4x day, canasa and carafate. I'm gonna give it a try and see if it helps. I've lost almost 15 lbs in 6 weeks. Surgery is still on my mind. Thank you for all of your feedback and Kelly, I am going to try the moonlight therapy.
Posted 11/11/2014 6:28 AM (GMT 0)
I was diagnosed with Colitis 10 years ago after experiencing diarrhea, stock cramping and blood in my stools. The only option that my doctor gave me was to undergo a surgery. I'm an ostomate for 10 years and I''m happy about my life now.
Posted 11/18/2014 9:49 AM (GMT 0)
Medications stopped working ..polyps grew back by the dozen, colitis spread to liver, couldn't hold full time job down, always tired....and the possibility of death...my jpouch surgery wasn't successful ...permanent ileo
Posted 11/18/2014 4:04 PM (GMT 0)
My breaking point is hitting now. Meds don't work, including Entyvio, extremely tired all the time, stinging sensation every time I go to the bathroom even when there's no blood or mucus present, can't put weight on, sick of the side effects of these drugs, can't sleep thru the night without having at minimum three bowel movements where blood and mucus always seem to show up....do I go on?!

Oh, and I'm in the process of launching my own company to boot!

I will be going the jpouch route and once I settle on a surgeon, it's go time!
Posted 11/18/2014 8:00 PM (GMT 0)
I didn't have a breaking point, really, just got worn down.... Had UC for about 12 years before I chose surgery. Tried everything possible- meds, alternative therapies, diets, mind-work... you name it, I did it! My GI had been recommending surgery for about 4 years, & after 3 surgical consults, persistent anemia, & a rapidly growing intestinal blockage due to scar tissue, I just could not face another day with UC. And I knew, all along, that I'd wind up getting surgery anyway! By that time, at least- not when I was first diagnosed. Now, afterwards... I can't even begin to imagine how I "lived" that life for so long. I can do normal things now, like go for a walk, go out to eat, leave the house before 9:00am without crapping myself. I have a perm ileo, was not a candidate for a j-pouch. Which is ok- I don't love the iloe, but I don't think about it that much, really. And it's super easy to deal with, trouble-free basically. I'm lost without my numerous doctor's appt's! tongue
Posted 11/21/2014 5:20 AM (GMT 0)
My story is much like Eva Lou's. I suffered with UC for twelve years too. My GI doctor had me on 50 mgm of 6MP for seven of those years and I still wonder why. Why he gave it to me and why was I so stupid to keep taking it. I went the Remicade route...failed after third infusion and then onto Humira...nada. I was prednisone dependent for two years straight...just couldn't get off the stuff. It gave me extremely high, uncontrollable blood pressure, full blown osteoporosis and type 2 diabetes.
My GI, unlike most others in here, refused to send me to a surgeon. He just wanted to use me as a guinea pig, I suppose. I found my surgeon online. I wasn't a candidate for j-pouch, but didn't give a hoot. I just wanted my life back. I had my surgery June 28, 2010. I was 63 yrs old at the time. Although my surgeon did an excellent job...mind you, I was extremely ill going into surgery. He didn't remove the anus. My rectum was badly diseased, but my colon only had minor diverticulosis. In August of this year I started feeling pressure inside the anus. The UC came back inside the anus and has spread over into the vagina. I had biopsies done on Nov 6th and am still awaiting the outcome. My original surgeon retired last year and I am seeing one here in Jersey (my operation was in Philly). For the time being, he has me using Canasa suppositories and a hydrocortisone cream, which I use on alternate evenings. The pressure is no longer there. I feel fine, so maybe things are ok. If there is dyplasia, the anus must go. The doctor said he didn't see anything that looked suspicious. I am wondering if I didn't contribute to this recent flare because I was taking Ibuprofen for back pain. The doctor told me to stop it immediately and he placed me on Tramadol for the pain.
I, like you, tried mostly everything, even chiropractic, which did more harm than good because of my osteoporosis. I have three back fractures.
You'll know when you are ready.....like most of us in here, we reach our breaking points.
Good luck
Posted 11/21/2014 3:49 PM (GMT 0)
My experience mirrored Eva Lou's. I got into a mold of feeling proud of myself for over ten years of suffering constant simmering and flare after flare, mini flare after mini flare, "fighting" off surgery and always hoping for some new drug or alternative therapy on the pipleline... Even tried FMT (home brewed) and multiple types of worm therapies, DMSO, every supplement under the sun, a couple bioligics, various diets (low carb version if SCD helped reduce symptoms but diet got extremely boring and unappetizing at my extreme low carb version) etc etc.

I had four surgery consults over some years and was deemed a candidate early on. I cancelled surgery once a month before my actual surgery which I rescheduled after realizing that I was in denial again. I was candidate for jpouch but after step 1 of 3 I opted to stick with end ileo as it works fabulous for me and suits my very active lifestyle better than having to worry about holding it in. That aspect of the ileo absolutely rocks for me, in some ways even easier than my life pre-UC as far as that issue goes, because I can wait for hours (counting after I get to point where I wouldnt mind emptying, which can be hours after hours) before emotying my pouch if need be, something that wasnt always a choice even as a normie. (With my 2 piece, occasionally I even swap out the whole pouch in seconds rather than emptying the pouch ... Eg if hiking or something that can be done very fast and you just seal up disposed pouch in a ziplock and paper bag to the next trash you come across). As for comparing it to my UC, OMG, to echo Eva Lou again, I didn't realize just how grotesquely compromised my life with UC was until after I recovered from my surgery. It is like i am an innocent man have been released from prison after a long sentence for a murder i didnt commit... All those wasted years. But I lived in that silly denial mode year after year.

Post Edited (Probiotic) : 11/21/2014 8:59:59 AM (GMT-7)

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