To opt for surgery? How does it impact your life afterwards?

The decision to do surgery is a hard one, or at least it was for me personally. I was so against it, but I was out of options and my quality of life was super low. 

I'm in no way lying when I say I don't regret my surgery at all. It was the best decision I could make with my circumstances. 

As far as life adjustments I am able to eat more foods. I am six months out and every month gets better. I am starting to sleep through the night more frequently and even if I get up it is only once and it's not bad. I have lots of energy, I'm able to do things with my friends, and I got rid of those drugs like Remicade, prednisone, lialda...

The first few months were hard, the pain and the learning to use the j-pouch was difficult. I have personally gotten cuffitis and am in the process of weaning off antibiotics. It might be worth looking into hand sewn on the rectum vs. stapled as that has been the issue for me. Still I wouldn't go back.

All in all, for me surgery was the best option. Something that kept me going was thinking how this surgery would be the best thing I could do for my future. If this surgery was going to have to come, this I might as well go through with it. My decision will have me much more prepared for life and I am so happy that I have a j-pouch.

One very happy j-poucher here!  

I didn't have a choice.  Three weeks into my first flare and hospital stay it was life saving to have my colon removed.  I could have been easily that 3% of people that die from UC.

I have had almost no issues since my J-pouch was created 18 years ago.  

The only issue I have just developed is Enteropathic Arthritis.

I agree with all the above posts. I tried every available biologic at the time and nothing worked. I didn't want surgery, but it was the best thing I ever did. Your quality  of life will improve greatly over time. You will know when enough is enough... Kara 

I had my surgery for j-pouch 7 mos. after being diagnosed with UC, and after 3 hospital stays, severe dehydration and malnutrition, along with C-diff, anemia with blood tranfusions and other fun issues.  I am older and opted for surgery due to severe pancolitis as well as dysplasia. I had been on Remicade but it stopped working, also enemas that did nothing.  Doing very well at 8 mos. since takedown.  Another happy poucher!  Good luck with your decision!  I also had laparoscopic surgeries with relatively easy recoveries and zero complications.  

CTB23, how old are you and where did you have your j-pouch created? I'm 61 and had a subtotal colectomy almost 6 months ago. Just had my records transferred to Cleveland Clinic and am awaiting their response. I've been told I'm on the upper end of the age bracket for a j-pouch, but have also been told it's really your current health and surgeon that matters most. Would love to hear more about your circumstance.

Hello, Laurbbyxo.

The one thing I wish I had known before my surgery was ask my surgeon to create a stoma that stands outward, and away, from my skin. That would have saved me from weeks of very painful skin erosion when my acidic output was in constant contact with my skin. If you do go through with the surgery and have an ileostomy created, ask your surgeon to insert a little rod during surgery to stop your stoma retracting or slipping into a flush position to your skin. Don't worry; your surgeon will know what the little rod is. A stoma shrinks after a week or so and if it retracts flush with your skin, you will have pain and raw skin. I don't mean to frighten you. I lived it, and want to help you avoid it. I remember waking up after surgery 1 and hearing a nurse say, "Her stoma is already retracted!" Convex wafer appliances did not really help.

Other than that, my recovery once I got home was quick, after the initial few weeks of fatigue and abdominal muscles rebuilding themselves every time I got up from a chair or bed. Keep moving, walking, exercising. I kept a water bottle in every room to help me drink. Other than a few bouts of pouchitis, I am fine. No pain, 4 - 6 BMs. I eat everything except raw veg, avoid greasy food, soda, nuts, seeds. UC puts you at higher risk for cancer, which is what happened to me even though I did not have any typical UC symptoms or needed any meds in decades. I am now cancer free. Good luck. Let us know how it goes; you will have lots of help and support here.

JFILL21, I turned 61 a month before my first surgery in November 2015 and had my takedown in August 2016.  My procedure was done in three steps.  Although, I had complications going into surgery, low grade fever and Erythema Nodosum (rare skin condition related to UC), my general health was pretty good.  I was hiking the following May with my ostomy bag and was in really good shape for the surgeries in June and August.  My surgeon also said I was on the upper end of the age bracket, but my results have been really good.   Last time I saw him in January, he commented that I almost didn't need to see him at all.  Hopefully my first pouchoscopy will bring good results.   I have made a few  minor adjustments to diet but really not anything I can't live with.  I also use Calmoseptine as needed, in the beginning, I used it all the time, as well as Immodium at night and Lomotil during the day as needed.  I also stay well hydrated and have never had issues with dehydration.

I will say that I have an excellent surgeon, wonderful person as well.  I was lucky to be able to plan my surgeries and had consulted with him beforehand.  If you have any other questions, let me know.  You can also pm me.  Good luck!  My surgeon is apparently the j-pouch guy at Yale.

Thanks CTB23. Any post surgery issues with hemorrhoids? 

No problems with hemorrhoids at all.  The only thing I have occasionally is butt burn.

My husband was sicker with the meds he was on, plus a year on steroids.  He never was in remission.  He made the tough decision to get the j-pouch and hasn't looked back (23 years!).  That enabled us to have our son (who is 20).  He is healthier and does not regret his decision.  

Hi!! I had my pouch surgery in 1999 when I was 35 and drugs like Humira, Entyvio, etc. were not available. I had no issues to speak of until a few years ago & they've continued on and off. I will say my doctors (I have 2, one in my home state of NJ & one in NYC) both said that if drugs like these were  readily available in '99 then there's a good chance I may have been able to avoid surgery. That being said, I was/am happy I had the J-Pouch surgery when I did. However, I also think you may want to give Humira a try, just be very in tune with your body and side effects. Unfortunately I began it the end of February and I took my last dose on the 19th of this month. Started with severe leg pain from glute to foot in both legs (after 2nd round) that has progressed to severe neuropathy on the left & some on the right. I can't tolerate this type of medication, my next stop is Entyvio. Good luck & hang in there!

My story was very near yours, minus the humira.

The GI doc's only have drugs in their toolbox.  And they'll keep using a combination of those tools to achieve some manner of results.  Yet someday, the side effect from those drugs could do their own damage (think arthritis). 

Surgeons have another tool that the GI doc's don't really mention all that often....and it can improve your quality of life.

Imagine your life w/o the cost of the drugs, keeping track of insurance claims, eating mostly what you want, running half marathons, not subconsciously looking for the can each time you enter a new building.  I was scared shitless....but the darn JPouch works. 

It's seriously a tough decision....because it's a one-way decision - - there's no going back.  But there's a lot of life to live, and surgery gives you the opportunity to live it on your terms again.

Who knows...by the time you're in your 40's, they'll be able to grow large intestines and you can get a new one.  Modern medicine is moving quite fast all of a sudden.

Best-