Hello everyone, 

 

Just wanted to introduce myself and hopefully get some more insight/thoughts on my case. Here's some background on my journey so far. I'll try to keep it short and to the point, I know everyone on here has read so many of these stories. 

  • Diagnosed at 21 with UC (mild case from what my doctor told me/what we saw on the colonoscopy) - shortly after my junior year ended in college 
  • Had the disease in remission with Lialda and VSL#3 - stopped using the VSL#3 because I thought it wasn't doing much and pretty much ate/drank whatever I wanted - shocker, I went into a flare. 
  • Had my ups and downs with minor flares for a couple years - nothing too crazy, always seemed to get out of them with a course of hydrocortisone enemas or Uceris. It always seemed to happen around finals time but I still think it was random. Avoided prednisone at all costs. This got me through my undergraduate years and then I went on to do my masters. Near the end of my masters program, a flare was starting...
  • I purposely took about 6 months off to study for my CPA  (passed them all - so glad that is over) before I started my job in January of 2015. I guess the timing worked well for a flare to start so I could hopefully get it under control before i started my career in public accounting. 
  • I tried to get out of this flare without prednisone but to no avail, I needed it. It took me around 6 months or so of prednisone/hydrocort enemas to get out of the flare and I began using azathioprine (100mg). All was good - I was in remission, moved into my new apartment, passed my CPA, ready to start my career! But I hated being on azathioprine - always have hated that it's a disease we can't really treat, just have to keep it at bay. 
  • I went on for 6 months living life normally (once again, not keeping my diet in check as I should have), taking my Lialda, VSL #3, and azathioprine. Around the end of May 2015, I started having symptoms again. 
  • And here I am, back on prednisone, upped azathioprine to 150mg (which hasn't helped at all) and am using hydrocort enemas again. Still battling the flare. It's definitely been weighing me down - it's extremely difficult to focus on work while having a flare. The next step is humira/remicade. I really don't want to go on these.

Surgery has been a thought that has crossed my mind but I never really gave it a serious thought until recently. I have an appointment scheduled with my GI in the next couple of weeks and I'm hoping to get his insights on the matter. I'm also hoping to hear back from the Mayo Clinic about setting up an appointment (I'm in AZ - does anyone have any surgeon recommendations? I'm trying to explore all my options surgeon wise).  I'm still on the fence about whether or not I want to do the surgery - a j-pouch is definitely the way I want to go if I do have the surgery. I've been scouring these forums like a madman these past couple days to gather as much info as possible and it seems like most people do live normal/good lives. The fear of the unknown is what really bothers me and there's obviously no way around that. 

 

 This disease has definitely been a rollercoaster ride. The hardest part is the feeling of that the disease is holding me back from being the person I want to be. It's difficult being 24 and trying to explain to people what is going on in my life. They won't understand - and I don't really expect them to. My family has been really supportive which has been great but this decision is ultimately mine. 

 

End rant/story - thanks for reading. 

 

 

Original Post

Hey there Hupshi,

 

I'm 22, also diagnosed towards the end of my undergrad. I went through a year of pancolitis without remission until I had to have surgery.

 

It sounds like you have tried a number of drugs, but have you looked into things like the Specific Carbohydrate Diet, fecal transplant, Low Dose Naltrexone, and other treatments that are both safe and work for many people? As you may know, the immunosuppressive drugs only mask your symptoms but do not treat the underlying cause of IBD.

 

Please do not let anyone tell you surgery is a "cure." This is a last resort for people who are either going to die from UC or for whom normal treatment cannot give them an acceptable quality of life. Before I had surgery, I exhausted absolutely all reasonable treatment options, including Humira, multiple significant dietary therapies, and even fecal transplant. I am glad I did so, because I would feel like going into surgery without having covered all your bases first would be irresponsible.

 

At least for me, my expectations were set very high by my doctors. Most people do well with a jpouch, but if you do not there will be no going back to your colon. This is a really big roll of the dice.

 

You must understand that things will never be the same as they were:

-if you have a **good** outcome you will have 4-8 bowel movements a day.

-bowel movements will be liquidy and will contain acid and enzymes that may burn.

-you can "eat anything..." but you might pay a price for it in the bathroom later.

-the surgeries were the most difficult thing I have ever been through in my life.

 

I'll be honest, I came into this surgery being told I should have an excellent outcome, and so far things have been extremely disappointing. At age 22, I am considering a permanent ostomy to give me an acceptable quality of life.

 

My advice to you is this: go have a surgical consult, and come armed with serious questions, including "what can go wrong? What complications could I have from this?" Talk to an ostomy nurse or ask your GI if you can meet people NOT on the internet who have j-pouches or ostomies. Consider the possibility of a permanent ostomy, as it is a much more predictable surgery. Do not let your doctors skip over this possibility without consideration.

 

But before you do all of that, make sure that you have tried everything reasonably possible to keep your colon with an acceptable quality of life. There are much safer  ways to getting your health back (not just drugs, although you should consider trying remicaide or entyvio too) than having surgery and if you are responsible you will try them first.

Thanks for the response Solomon.

 

Sorry to hear that things haven't been going well for you - if you ever need someone to vent to, feel free to send me a PM. Whether it's life in general or specific to this, I know it can be tough talking to people about this stuff.

 

I think this is exactly why I posted here. I needed a different perspective. I have looked into other methods of controlling UC. I've tried an elimination diet to figure out my "trigger foods", i've tried natural supplements to get the dysbiotic bacteria out of my system etc etc. 

 

At this point, I'm going to keep my options open. I think I need to realize losing my colon should be the last resort - it's not just an easy way out to get my a "normal" life back. 

Hupshi-

I think SolomonSeal is painting an overly dark picture (e.g. I eat whatever I want, haven't had burning in 10 years, and don't pay a significant price in the bathroom, though I do get reacquainted with some foods on the way out). OTOH, it's absolutely true that this is a big step, best undertaken when medical options have failed, and it doesn't always go as planned. Consider your rejection of biologics carefully - you can stop a medication, but you can't undo surgery. 

 

I'm with you on J-pouch (vs. external ileostomy). I'm very glad I had my J-pouch surgery, and most people have an easier time of it than I've had. Choose your surgeon carefully! Good luck getting your life back!

Surgery was the most difficult decision I ever had to make!!! My daughter was 3 yrs old.  We had moved away from friends and family and I had left my G.I. dr. and was seeing a colon rectal surgeon for my U.C.  I had U.C. for 10 years, diagnosed at 19 years old.  Back in 1989 there weren't as many medications available for it so preds, etc. were the answer to trying to control u.c.  but when all the meds failed I chose the surgery.  It took 6 surgeries to make the J pouch correct.  (my original surgeon screwed up!!!) Ended in Cleveland Clinic in the hands of Dr. Ian Lavery who is my hero!  There are dark moments to a j pouchers life...but there are also good days too.  But you must remember....every body is different.  What may work for me, may not work for you.  But once you decide on surgery for a j  pouch remember that it's  a very big surgery and know that with all surgeries, big or small, there are risk.

for me and my disease having the pouch surgery was the best thing that I could have done.  Sure there have been some problems and it is not perfect .. and yes you do go to the bathroom more often, but nothing like the UC days.  The actual surgery and recovery was difficult.  I would say it took 6-12 months to feel good again and get everything working properly.  But being 10 years post op, I can't imagine what my life would have been like without the surgery.  I am sorry I can't help with surgeon recommendations, I had my surgery at the Cleveland Clinic.   Wishing you the best, please post here any questions you may have.   

I went throught lots and lots of surgeries, finally looking like things are going in the right direction with Dr. Remzi in Cleveland.  You do bring up an interesting point .. is surgery (a j-pouch or even a stoma) an option for someone "simply" struggling with very bad colitis issues?

 

I can tell you, when I was in college I was grossly under weight, could have bloody stools ANYWHERE and ANYTIME and pain in the abdomen that forced me to pull a car off to the side of the road because I would have caused collisions!  Therefore I CAN understand why someone could want to consider surgery, even if they hadn't yet developed colon cancer for quality of life.  I ultimately did develop colon cancer, and blessed that we have j-pouch options.  I can honestly tell you, an ileostomy was better for my quality of life than when colitis took over.  

 

Now, having said that, I'd be sure to exhaust other non surgical options that would be available, of course!  

Hi there..I am a wife of a J-poucher.  He was diagnosed at 27 with UC.  Decided at 34 he had enough of UC since he never went into remission. The steroids were making him sicker than the disease.  So, on Valentine's Day 20 years ago, he had stage 1 of the operation and on D-Day, the 2nd operation was done.  It hasn't been clear sailing..but, he did get his life back.  

It sounds like you haven't exhausted all of your medical options yet, specifically the biologics. I know they sound scary, but I had no adverse reactions to them. Unfortunately,  I had no positive reactions to them either! I was very ill before my surgeries--unable to work, unable to leave the house without having accidents. I'm only a month out from my takedown surgery, and I'm still waiting for things to calm down, but I'm already feeling healthier than I have in a year. But you might give the biologics a try before you take the irreversible step of surgery. 

Thanks for the replies everyone. At this point, I'm still waiting to see my GI to take the next step up in medicines (remicade or humira) and I have an appointment set up at the CC in October. I plan on going on the biologics and seeing if it gets me out of this flare and off steroids. Even if it does, I'm keeping the CC appointment and the option of surgery on the table. Unfortunately, I don't have a lot of faith in the biologics keeping me in remission for long term and would prefer to have the surgery at a time when its preventative instead of necessary.

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×