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I was diagnosed with UC in 2004. I have been on just about every medication (5-ASA, 6MP, Remicade, Humira, currently on Entyvio) and I still have symptoms although they have been better since I started Entyvio a few years ago. Right now I am going about 4-5 times a day with urgency about half the time. My quality of life is better than it has been, but I am still not happy with it.

I had 2 colonoscopies last year and they found dysplasia through most of my colon which means I am at a much higher risk of developing colon cancer. My doctor is recommending surgery and I am really worried about it. For those of you that have had the surgery what does life look like afterwards? What kinds of foods drinks should I avoid? I love a cup of coffee and enjoy beer/wine as well, are those tolerated after the surgery? I am also a professional musician (trombonist) and am concerned about the length of recovery time, does anyone else have experience dealing with something like this? 

Many thanks and I hope we can all move towards a healthier life together.

Cheers!

Reply posted for markmiller1984.

What was the dosage for you? And was it to treat Crohn's or UC?
Geometry Dash

Reply posted for canthony.

I've been an ileostomate for 48 years following a 4 year bout of UC.  When I had UC it was before colonoscopes and the only meds we had was sulfasalazine and prednisone.  Having said that I have never looked back making a career caring for patients with IBD.  Dysplasia is nothing to mess around with!  The problem with dysplasia is there can be actual cancer in another part of the colon that you  cannot see.  If there is true dysplasia the entire colon must come out!  Nobody should die from colon cancer due to UC or CD if we can avoid it.  I am reminded about a patient in my residency days who had been diagonosed with dysplasia and did not have a colectomy.  By the time he presented again, he had metastatic colon cancer and he died at age 22.  

Reply posted for markmiller1984.

I was diagnosed with UC in Nov of 2011. I have failed all of my treatments with the exception of Entyvio. I was good for almost 18 months. I thought I beat this horrible disease. My surgical consult is scheduled for early October. Our last miracle was supposed to be Xeljanz. They were all supposed to be my miracle drugs. Although I do feel better, it doesn't work well without prednisone and it's time to move on. Although this is a life altering surgery for sure, it's just become to difficult to manage on my own and affects my entire family. I'm more afraid of what life will be like with a bag, fear of the unknown.  I'm a Mom, a wife, I have a career and I love good wine! And let's be honest, sex with a bag??? Uuuuughhhhhh

Reply posted for muskiet.

Hey Mark,
     Not sure if you made the decision to have the surgery yet. I myself had uc and lived with it for 10 years. I went through every drug possible. I opted to have the surgery 2 years ago. I think back now on how difficult my life was with uc. I feel like those 10 years were some of the hardest times in my life. Everyone has to make the decision on how they want the quality of there life to be. That being said the road to recovery was hard but it made me better as a person. I say this because when i had uc it affected my attitude and everything around me. I was sick, angry and felt worthless therefore i gave those feelings back to everyone i encountered. I had the surgery and had to wear a bag for 4 months. I lost 35 pounds and went through plenty of struggles. Looking back now it was a very good desicion that i made. I can move on with life and deal with new challenges and not have to worry about some life long disease that is an extra weight on top of normal everyday life which is hard enough. My recovery time ( fully recovered ) was about a year. Sometimes i feel like i am still getting better and better. I have to watch the foods i eat which everyone with or without uc has to do anyway so why should i be any different. If i do this sometimes i'll go to the bathroom 1x a day maybe 2x. Somedays are a little more depending on what i eat or drink but i feel pretty much like a normal guy again. The best part of the surgery for me was that if i had to go i could hold it , no more urgency or accidents. 

Best of luck to you , I hope this helped

Reply posted for markmiller1984.

Hello All, 

I am glad I came across this post as I am in the same position. I was diagnosed with UC 4 years ago and have made my way through every medication. I am currently on Apriso, Prednisone, and once a month infustions of Entyvio. While I do feel much better on Entyvio, I am still not happy with the way my life has been impacted. I am not able to do things with my kids that a mom should be able to do. My most recent colonoscopy showed that the Entyvio isn't working, so I am facing a medication change or surgery. 

Like you, it sounds like the j-pouch route is much more intensive with muliptle surgeries and side effects. I work in a public school, so I cannot simply go to the restroom when I need to and sometimes the urgency is such that a restroom isn't even close enough to my location. It sounds like with the j-pouch this may still be an issue that I don't want.  I am considering just going the route of getting the ostomy bag and being done with it.

I'm really looking at pros and cons of both the ostomy bag and the j-pouch so I can make some decisions. 

Thanks for any and all information! 

Reply posted for markmiller1984.

Hello!

Not sure if you've made the decision about surgery or not but I was reading your post and thought I could offer some insight from experience! 

I elected to have a permanent ileostomy (no colon left whatsoever) 2 years ago after living with severe uncontrolled Crohn's for 10 years. Honestly? I LOVE it. My recovery however, had a LOT of complications that were unique to my situation that landed me 3 months in the hospital. However, If you find a good surgeon (which mine was) that can do a laproscopic surgery the recovery is minimal - about a 3-7 day hospital stay with a 6 week recovery from heavy lifting. My scars a tiny and barely noticeable (there are 4 small incisions and 1 longer that kind of resembles a C-Section scar). The diet starting off is like thin soups (I ate canned soup), ensure + protein, and like cream of wheat; super simple things that give you protein but allow your bowels to rest and reduce inflammation post-op. 

Currently, I can eat almost ANYTHING, like a full bowl of salad - which I never was able to do before! I love being able to eat and not feel like I'm going to die from food. I do steer clear of raw, fibrous vegetables like broccoli (1 or 2 wont' hurt if you chew well) and corn, because these foods don't break down well, even in a healthy person, and can a blockage as the food has to be able to pass through my abdominal muscle; which is not as stretchy as a rectum. Even then, if I take care to chew my food really, really well and avoid large portions of those veggies I don't ever have problems. 

Alcohol and coffee; two of my favorite social pastimes- I can enjoy them more than I ever could with a colon. The catch is that these drinks are diuretics; they pull water along with the caffeine or alcohol molecules, meaning you can become dehydrated really easily. To compensate, I drink equal amounts of water to alcohol/caffeine. For example, someone with an ileostomy (which has more requirements than a colostomy) I don't absorb water well because, well that's the colon's job. So, an average person needs about 8-10 glasses of water a day- I would need about 11-13. In addition with alcohol or caffeine, I add a cup to that base amount. Basically, get used to carrying a water bottle!

Life with an ileostomy: I can do anything and everything I couldn't do before. Yes, the bag can leak and have malfunctions; it sucks but after the first time, you kind of develop a game plan for the next time. If you decide on surgery, your Wound-Ostomy Nurse is a fantastic resource that can recommend the right appliance for you and the right accessories to go with it. It took me about 3 weeks to decide and I have bought the same product since! I rarely have a leak, and if I do, it's usually because it was time to change the bag anyway, or I was sleeping and ate a big meal right before bed so my bowels have a lot of work to do. Depending on the device you like, they can last about 6-10 days between changes. Also, I carry an emergency kit with me wherever I go- of course I'm a woman so I can hide it in my big floppy purse, but it's a good idea to have a back-up stashed close by. Some people I know keep a change of clothes in their car, but honestly, in 2 years, I've never had a leak that bad. When it happens, you KNOW right away because you can feel it, generally before it even breaks the seal around the skin. 

Clothes- I wear the same clothes; I prefer flowing tops and tighter bottoms and it functions just fine with a bag. Also, compression shorts are my best friend because they hide the edges of the bag under my clothes and keep my pants from pulling on the device due to friction. 

The smell- unless your bag is really old, or wasn't cleaned properly after emptying, there is none. Right after surger

Reply posted for Fletch.

I had a proctocollectomy with j pouch surgery fifteen years ago.  Had a colostomy for three months while the j pouch healed.  I cannot imagine ever having a bag again.  Some things to consider about the osteomy: the bags fail.  Not every time, but they always do. My bags failed everywhere except the communion line at church, and that missed happening by about five minutes. You have no control over your waste.  The only time you can go without the bag is in the shower.  If you have gas, it will fill the bag like blowing up a balloon.  The acid in your digestive system will burn the skin around your stoma.  You’ll need to take a change of clothes wherever you go in case  the bag fails.  My colorectal surgeon used to try to talk me into another osteomy, but as I told him, I can suffer a lot more than where I currently am before I’d ever consider going down that road again.

Reply posted for markmiller1984.

Hi! I had colectomy surgery a week ago today, and so far, am so happy I made the decision to have surgery! I woke up completely free from pain, well, except from the soreness of surgery. This is the first time in a year that I am not running to the bathroom or hunched over in pain! I am still getting used to the illeostomy, which I don't know if I will really get used to it, but I know it is only temporary. It really feels like I have a newborn again, having to empty and change my bag a couple of times a day, sometimes there is a blow out, but it is nothing compared to the pain I was experiencing and the time I was missing with my family. Now, I am 1 week out and I know I have a long road ahead of me, but that is where I am today. I hope this helps, you really have to think about what is best for you! Good luck!
Kate

Reply posted for markmiller1984.

It is an excellent question markmiller1984. I have just started what is probably my final chance at drug therapy; having tried the usual 5ASA, Predisone, foam enemas, Azathiaprine, Infliximab to little effect to treat my UC, I’m now one infusion in on Vedolizumab.

While I remain positive that this drug will be the one that works, I am now mentally preparing for surgery.

Thankyou to all who have responded with your experiences so far on this thread. What I am currently trying to find out are the pros and cons of having an ileostomy with an external bag verses an ileo-anal with an internal or j-pouch.

While the external bag clearly effects external apperance, it seems to me to have much less surgery involved and sounds like future urgency and frequency issues become much more managable. The ileo-anal on the other hand requires at least two major operations, a significant period of leakage (incontinience) until the body adapts but then being left with still having to go to the toilet 7 times or so per day.  As the frequency and urgency issue, for me at least, is the most debilitating aspect of the disease as well as steriod side effects, etc .... it would seem to be an obvious choice to go with the ileostomy external bag option.

I would very much welcome views of those who may have faced this decision in the past and what made you decide on one course or another.

 Thanks 

Reply posted for charbs.

I had a total collection and j pouch 25 years ago. So for long term adjustments there have been many. The best part was no more bleeding and terrible pain. The rest is constantly trying to figure out how to manage my gut life. I still have to go to the br within 30 minutes of eating anything, sore bum (a lot) until I bought my first bidet 4 years ago (thank you forum for info on that!) Since then I bought one for my sisters home too. What to eat and when has been a process I am still working on. The best thing to remember is in spite of What they tell you you still have uc, you just don't have a colon. Try to focus on decreasing inflammation, probiotics and having positive attitude. blessings to you, good luck.

Reply posted for BobBaker.

But from 15 to 40, did you feel it become much worse?

Reply posted for markmiller1984.

http://www.efcca.org/en/pouch-surgery-0

Reply posted for markmiller1984.

Mark, I was diagnosed with UC when I was 15 and managed the disease with Sulfasalazine and Prednisone. I developed colon cancer at 40 and was given the option of partial colectomy or total colectomy, I chose the partial colectomy at the time. Two years later I was back asking for the total colectomy and ileostomy and having had the proceedure I feel so much better in every way. 12 years later I had my rectum removed as well.

So... What's it like having an ieostomy? It is an ajustment, but a good one for me anyway. I had been sick for so long I forgot what it felt like to feel good. The ileostomy is working well and I am in good health. I've had it for 15 years now.

As far as food and drink...I have no trouble with coffee or beer/wine in moderation. Dehydration is the main concern. Drinking enough is key. There are a few foods to avoid to prevent blockages but for the most part I eat just about anything and now have to think about loosing weight instead of gaining it.

I hope this helps. if you have anymore questions, I'd be happy to share more.

Bob

Reply posted for charbs.

Let me add to my original post, when considering the surgery, do your homework.  Go somewhere where they do this surgery all the time, and make sure the surgeon  you are considering has performed the surgery lots and lots of times.  With successful outcomes.  And when you visit the hospital, and interview the surgeon, if you’re  not comfortable with them, keep looking.

Reply posted for markmiller1984.

I have had the surgery, a complete proctocollectomy with j pouch.  It’s really major surgery (2 surgeries, actually). But I was at the end  of my rope.  None of the meds worked, except prednisone and I was passing so much blood that in the end I was having to have three pints transfused every month, so I elected to have the surgery.  Strange thing was the colitis was in remission when I Actually had the surgery, which really screws with you mentally.  The three months with a colostomy were the darkest of my life.  I was so happy to wake up in the hospital with the colostomy gone.  I did have issues with pouchitis, which in the end turned out to be Crohn’s, which I am dealing with to this day.  It’s a huge decision, especially since it’s an elective surgery, not like cancer where you pretty much know you have to have it.  There’s no end to second guessing your decision.  But I feel like I made the right choice.  And you don’t have to worry about colon cancer.

Reply posted for markmiller1984.

Was hoping there would be answers posted to your questions, since I'm facing the same decision. I have multifocal dysplasia and was shocked that the protocol is the remove the entire colon, when those who have cancer have resections and keep their colon. Why is the cure for precancer so much more extreme?

I have the same kinds of questions and concerns and so will follow your thread in hopes that others will respond with real life answers.