UCers, when did you know it was time for surgery?

Hi all,

New poster, longtime lurker. I've had UC for 5 years and have never gone a day without urgency, including when I'm "in remission." I've been on Entyvio for about 4 months and have yet to see any improvement. In addition to the GI symptoms, I have extreme fatigue, serious headaches and joint pain (likely from my meds), and am becoming increasingly food and medication intolerant. I no longer eat lactose, meat, anything spicy, fried, too processed, too much sugar, etc... I can't handle most vitamins, supplements, even tums due to the magnesium.

My doctor seems to think I'm rushing towards surgery, but I'm 34 and have already had 3 major abdominal surgeries and my quality of life is nonexistent.
How long did you wait? When did you know it was time for a j-pouch or ileo?

I think for everyone it is different. I made the decision when the doctors said there was no other choice. My colon was fully inflamed from top to bottom and we had tried basically every treatment available at the time. To be honest I was shooting stuff up every which way imaginable.

The surgery was a godsend for me, I went from 6'3" 140lbs at time of surgery (due to extreme urgency and going 20-30 times/day) to now 200 lbs. and can eat and do whatever I want. I play golf, have been water skiing, lift weights, you name it I've probably done it. I got an ileo with the option to have the J-Pouch, but my life has been so good with the ileo I haven't given much thought to having 2 more surgeries to get reconnected. It's been 3 years for me.

However, there are a lot of people that the surgery didn't clear up all there problems, or the surgery caused new complications. I think it is an individual decision, but I have had doctors who thought having surgery was just crazy. I don't think they realize how hard life can be dealing with the issues this disease creates.

Hi L Rachel....I had ulcerative proctitis for twelve years before having surgery. During that time, I did have some remissions. However, by 2003, my flares became more and more frequent for longer periods of time. My GI doctor just wanted me to try more and more meds. I tried Remicade, but after my third infusion I suffered a bad attack of, what I thought was the flu....stomach pain, diarrhea, fever, etc.. My GI doctor said I had built up antibodies to the Remicade and to stop it immediately. A month later, I started on Humira...no change after three months. Long story short, I became prednisone dependent and it was literally killing me. Since my GI doctor refused to send me to a surgeon....he said he wanted me to try more meds , I sought one out online. I live in the south Jersey area but knew I wanted my operation done in Philly. I had a total colectomy with end ileostomy on June 28, 2010. While I do have some issues (my surgeon did not remove the anus and the disease became active inside the anus in 2014), it still is a heck of a lot better than life before my ileo. My new surgeon (mine retired in 2013) said to remove the anus would be too much of an operation for me. Only if it impairs my quality of life (which it does not) will he operate. Maybe I will need it removed in the future, who knows, but, right now life is grand!!!!

You're still quite young but you've still got a few biological things to try before you make such a life-changing decision. Hang in a bit longer but on a note of caution, if the damage never gets a proper chance to heal, especially round the anal/rectal/sigmoid section it could get really serious.
In my own case I was left without a choice, don't let it drag on too long or what seemed like a routine flat polyp on the cuff of the rectum and the sigmoid can develop into a stage 3 cancer in less than a year. Bowel cancers that emanate from UC are usually aggressive and materialise at around the 10 year mark. Mine was right on cue.

Let's hope you never have to make that choice but don't leave it for 10 years!

According to my surgeon, quality of life is the #1 reason for surgery. If you feel that you lack quality of life, then it's reasonable to consider surgery. In hindsight I think I waited one year too long before committing.

Sue

It's your choice. I'm 23, going in for my first operation on Monday. There are still a few things I could try but for me personally, being on drugs for the rest of my life isn't an option. In most cases taking medication for long periods of time can damage the body more than the illness.

I researched into it and met with my surgeon a few times. Always had a list of questions to ask. After the 2nd meeting I told him I understand what this means, I understand what the outcome is and I'm ready. Had it since I was 13, quality of life is almost non-existent.

Right now I'm fairly fit, well as much as I can be. I don't want to wait until I have to be rushed into hospital for an emergency option. Complications are more likely to arise. So while I'm "healthy" I want the have the operation. Have a better chance of recovering & healing.

If having a bag means I get to live, I'm all for it. Come next Monday my life is going to change hopefully for the better.


My advice, just research, research, research. You'll know when you have done enough to decide if it's something you want to do

Stay positive and good luck

L Rachel,

you could wait to have the surgery until you are almost dead....or, until you can barely stand, feel like passing out every 15 minutes, in constant pain, nausea, etc., but that's your choice.

also, you said you have had three surgeries? Don't mean to scare you, but each time you have abdominal surgery, it does leave scars on the inside...the more scars you get, the harder it is to heal the next time.

Are you waiting for a cure? Are you waiting for some sign? are you on Prednisone a lot? If so, what do you think about having cataracts at 40? Osteoporosis at 40? bags under the eyes at 40? Steroids induced diabetes at 40? If you're on Humira/Remicade/etc. - do you want to be on those biologics the rest of your life?

After you have the surgery, you are done - yeah, it's a long recovery - could take up to 24 months ( I don't know your situation), but you're done with UC, dirty bathrooms at car repair shops, running to the bathroom, going 65mph in a 25 zone trying to get home to go to the bathroom.....but, it's up to you.

Hope this helps, and sorry if I am a little blunt.

Best regards!!!

I'm the mom of former UC sufferer. My son was diagnosed the summer after his freshman year in college. His symptoms had begun developing around Christmas. Less than two years later, several hospital admissions, various medications, endless prednisone, no remission at all, insistence by his doc that he go on biologics, and a medical leave of absence from college, he scheduled his surgery against the advice of his GI doc. His surgeon was top notch, looked at his medical records and agreed that surgery was a reasonable option at this point. It was a grueling recovery. But 10 months later, he is living life uninterrupted by UC. A full time student again with a part time job, going to concerts, playing in his band. Just as an outside observer, I can tell you his life is completely back on track from where it was prior to UC entering his life.

Hello Rachel. I had uc from Jan 2016 to April 2017. In Nov 16 was my first hospitalization. From lialda I got membranous nephropathy. My left lung was completely filled with fluid. I was also in a flare. In Dec I got c diff twice. I was hospitalized a few days before Christmas. I started to flare again. I had a flex sigmoidscopy, and was diagnosed with cmv. The hospital said the couldn't do anything for me. Truth be told, I was in bad shape, both physically and mentally. I wouldn't eat, when I did, I spit the food out. I couldn't sleep. I was on at least 10 different medications, which severely altered my state of mind.

I was to be transferred to Mt Sinai hospital, but had symptoms of a seizure in the ambulance. Next day I went to Mt Sinai. I spent a week there.

I went back to Mt Sinai in Feb for a MRI. I was in such poor health they kept me. I didn't even have the MRI. I had another sigmoidscopy, and I was told the came back. I got my first dose of remicade.I spent another 3 weeks there.

In March I was still flaring, and had my second dose of remicade.

April I spoke to my GI to get scheduled for the 3rd dose. After hearing how bad I was she directed me to the ER. I had my second colonoscopy. 2/3 of​ my colon was bad. I recurved like received the 3rd did of remicade. Within a week I was still flaring. A surgeon came to see me on Friday. She saw my case and thought I would benefit from a total colectomy. She came back on Sat met with my wife and discussed everything with us. I was scheduled for surgery on Monday morning.

Prior to the surgery, from Nov, when I wasn't hospitalized, I was sleeping on a couch. Showering with a stool. Not being able to play with our 1 year old daughter. I had 2 blood transfusions.

I'm a month out post surgery, with my ileostomy bag. I saw my surgeon 2 weeks ago. She was thrilled I gained 6lbs, she said most people don't gain weight for at least a month. My red blood cell count increased. I feel 💯 times better than I did with uc. I can lift and walk with our 1 year old. And I'm taking care of our 2 week old daughter. I have a ton more energy.

No I don't regret doing the surgery sooner. I may have rushed, ended up with the wrong surgeon, and had a different outcome. I'm now down to 5mg of prednisone, and this will be my last course of it.

I recommend surgery if your quality of life, for a lack of better words, sucks!