Seeking Advice - Elective Colectomy/Ileostomy Experiences

Hi everyone! My name is Nicole. I am 30 years old. I was diagnosed with UC when I was 16. I have been struggling this entire time, switching medication and diets, trying to find something that will work. And unfortunately, nothing has helped. I am currently getting Entyvio infusions every 4 weeks, taking Lialda every morning, 9 fiber pills a day, and sometimes maxing out at 8 Imodiums a day. I have been having sporadic bowel incontinence since my diagnosis, but it has gotten so bad over the last 2 years that I no longer have any faith in my ability to control my BMs or pass gas. It has severely impacted my life. I don't eat for at least 24 hours if I'm going to go anywhere other than work. Last November I didn't eat for almost 3 days because I was in my cousin's wedding. I put a smile and brave face on, so people can't tell how much I'm hurting. But last year I came to the point where I was done. I brought up surgery to my husband, parents, and my doctor. My doctor referred me to another GI for a second opinion. She has hit on a few things that nobody else has. For example, apparently my bowel incontinence is due to scar tissue in my rectum from inflammation. She calls it "rectal noncompliance" and has referred me to try pelvic physical therapy. While this is a new recommendation and a bit exciting that she did pinpoint something no one else has, she has referred me to a colorectal surgeon. I have a consult in September. And after 1.5 years of thorough research, I am heavily leaning towards having surgery. I'm not sure what kind it will wind up being (I do have disease throughout my entire colon). I'm wondering if anyone on here has had a colectomy or ileostomy electively? If so, do you regret it? Is there anything you wish you had known before surgery? Any advice would be much appreciated.

Hello Ruppy08. Thank you for sharing your story and your dilemma in descision making. My own faecal incontinence continued for about 15 years before I finally elected to have a colostomy. I do not regret having the operation and I have been offered the opportunity of having a reversal, which I have turned down. Having a stoma brings its own challenges, but nothing like the inconvience, pain and nuisance of feacal incontinence from the anus. Of course I have regrets that this has happened to me at all, but there was little or nothing that I could have done to prevent it.  The one thing that I would have liked to have known (years) before surgery was that having a stoma would improve my quality of life rather than detract from it. If I had known that then, I would have elected to have the stoma ten years earlier.

I hope thid helps!

Best wishes

Bill 

Ruppy08,

Please be sure to actually read all of your medical records, and if there is anything you do not understand, have your PCP and then your surgeon explain them independently. When you have all the facts in hand, it is easier to make an informed decision. Words and conversations with doctors are vital, but reading and understanding the records is imperative.

Good luck with your research and your decision.

Peace.

Dadnabbit.

Thank you, Bill! I really appreciate your response. I'm so happy to hear that you're doing well and feel positive about your choice. That is exactly what I'm hoping for - that I'll have the surgery and it'll go so well that I'll wish I had done it sooner.

Hi:

I had a total proctocolectomy done five years ago this coming July 7th. All I can say is that I totally agree with Bill. I even mentioned this to my doctor - why didn't we do this sooner? Quality of life is so much better. Yes, surgery will be a learning experience product, food-wise. I suggest if you go forward, contact your local Ostomy support group and have your doctor recommend an ostomy wound care nurse. Good luck.

Words of Encouragement from Ostomy Advocates I Hollister

Thank you Riva for your reply!! I'm glad to hear that you're doing much better with the ostomy! I took my husband to a GI appointment last year and told my doctor I was done and wanted to know his thoughts on surgery. He said he thought it was drastic at this stage since my disease wasn't that bad and I had never been hospitalized. He even said the dreaded "but you look healthy!" I tried the quality of life argument and he suggested a second opinion. Now she is the one who brought up surgery to me. I feel validated-maybe I'm not crazy!

Thanks for the tip, I'll definitely reach out to a local support group.

Miss Nicole,

There are so many factors to consider with having ostomy surgery. Definitely continue to do your research and that includes finding a good surgeon and an ET nurse. Several of the members here had to have emergency ostomy surgery and a lot of us chose it electively.

I myself chose to have the surgery at 23 years old. I was diagnosed with Crohn's Disease at age 14 and attempted to manage it with medications until I couldn't take it anymore. In and out of the hospital for flare-ups, 6 different types of medication 3-4 times a day, no social life, school was hell and working was even worse. Luckily, I had a job that worked with me and there were no issues. The internet was just becoming popular so there was no real way of finding information other than support groups, doctors, ET nurses, etc. But now, you can look up anything and everything there is to know about ostomies.

I was stuck in the hospital for over a month due to abscesses but everything was SOOOO much better. I no longer had to be on medication for Crohn's, I was no longer in pain or had to worry about not making it to the bathroom in time. It gives your sense of control back. After a few months, I was better than my old self.

It sounds like if you elected to have the surgery, you would probably get an ileostomy. They would perform a total or subtotal colectomy to remove your colon. The stoma would probably be on the right side of your abdomen. Out of the hospital in 1-2 weeks, back to normal after about 4-6 months depending on how well/fast you recover. That is the best-case scenario.

You also have to confer with your husband. How will he feel about you having the appliance? All in all, you have to do what's best for you. I'd be happy to share any other information with you. If you have any questions, please let us know.

Bain

I made the decision to have the surgery and ileostomy after 10 years of intractable UC. I took a year to think about it and do research. It's probably the best decision I ever made relative to my health. I got my life back and there isn't anything I can't do. The FAA even reinstated my medical certificate for commercial pilot duties. For me, being outdoors in remote locations was important and so I found Heidi's blog "Ostomy Outdoors" and learned about managing an ostomy in austere environments, among other things. I went into the surgery with full confidence of the outcome and I'm glad I did it! When you're sick every day, it becomes normal and you forget what life can be like. Without my colon, EVERYTHING is better. The ostomy is an afterthought.

Like you, my disease wasn't the worst, but it was progressing. I had been hospitalized for numerous secondary issues related to the colitis. I failed all the major drugs and ended up prednisone dependent. I take nothing now.

A couple things: I used to work in the OR, so it was easy for me, but really find a good surgeon. Make sure you wear multiple clothes to find the ideal spot for stoma placement. Find the appliance that works for you, try them all. Be aware of the emotional impact - I actually did really well with this but my wife is super supportive.

Thank you for sharing your story. I know how difficult a decision this is. Are you thinking of having J-pouch surgery or going right to an ostomy if you don't mind me asking?

I also had UC since age 17. Finally, I had an emergency ileostomy at age 61. I say, go for it! It's a celebration, so much easier than UC. Much, much better! Do not get a J-pouch, no matter how they try and convince you. A high percentage of people with J pouches are suffering just as badly as with UC. (I've done my homework on that - personal interviews with people and docs) Experiment with types of bag systems. I found the convex system works best for me. I get 4-6 days - generally 5. You can shower, swim, exercise - no worries. I use a two-piece system with a "high output" larger bag at night. I am not on any meds. Good luck, dear!!

Ruppy08,

Hi. I have had an ileostomy for almost 60 years for Crohn's. In fact, he was my doctor back in NY. They did 23 surgeries for complications, but the final one at 18 did the trick. The complete colectomy and rectal removal took time to heal. At 21, I started living again, got married, and had 2 children and 4 grandchildren. I became an Occupational Therapist, and things have been good except for the passing of my wife 10 years ago.

The longer you wait, the greater chance for complications. Consider stopping the Entyvio as too many side effects have been noted, especially chronic URI's lasting for months.

A

Do

Hi.

I just wanted to share my life with an ileostomy. I have had mine for 23 years due to UC. I had to have an emergency surgery to remove my whole large intestine. I never lived with any of the problems you have had. My ileostomy has not kept me from doing anything so far. I have traveled many times internationally, gone swimming, and been zip lining. I could not imagine always having to worry about a bathroom or being in so much pain. Hope everything works out for you.

While I did not have Crohn's, I have dealt with chronic colon problems for 2 decades. This all culminated in a permanent colostomy last fall, and it was the best decision I could have made. I have my life back, with no worries about where bathrooms are, traveling, etc. etc. Work with your doctors, get multiple opinions, and you will figure it out and do what's best for you. But if you are worried about having an ostomy, stop. If it's the right procedure based on medical factors - you can look forward to feeling free again - or possibly for the first time. Good luck!

Hi Ruppy

I'm so glad that you asked this question. I wish I had the internet and a support group that could have helped me. Your story and mine are very similar. I was diagnosed with UC when I was 14 and feel that I lost my entire adolescence and young adulthood because of the different problems associated with this disease. I was among the 10% that experienced the secondary issues, like the wasting disease, pyoderma gangrenosum, rheumatoid arthritis, etc. I tried to push through, got married, then divorced, tried to go to college and worked during this time, but not very successfully since I couldn't sustain much activity for very long. Finally, when I was 28, when I had another episode of the pyoderma...... I decided, enough was enough and I approached the doctor about the surgery, in my case an ileostomy and total colectomy. I really didn't know exactly what it entailed but I can tell you 45 years later that I have had no regrets. Since I was so sick prior to the surgery I was in the hospital for six weeks and spent a couple of months with my parents to recover my strength. This is my take on all this. Why spend your life suffering and in horrible pain when there is a solution, however dramatic it might seem. In reality, an ostomy is a life saver and, for me, the only downside was cosmetic. I have never had any problems with my ostomy except for some skin irritation for which I found a solution. I totally agree that the most important thing is to find a really good surgeon. I was lucky, mine was fantastic and I credit my doctor with 45 years of no problems. I was lucky also to have a very supportive family and friends. I wish you great health and a happy life, no matter what decision you make. Feel free to contact me if you have any questions.

Hi Ruppy 08,

I believe we are both in a very similar situation. I was diagnosed with UC 10 years ago. To cut a long story short, due to a history of cancer (not the colon) my gastro team were unwilling to give me most of the immunosuppressant drugs that can help with the UC. I have been on and off steroids for the last 10 years. My UC is not the worst case scenario but has had a huge negative impact on my life. My UC is slowly on the move up my colon and I have been in a flare and bleeding since last September. I ended up in hospital last month and was told the only medicine I have left to try is Entyvio but this is a new drug and has no long-term history for people with previous cancers so I am not prepared to take the risk as my cancer was in a couple of lymph nodes as well. I have made the very difficult decision to have a permanent ileostomy and my surgery date is 23rd August - this is called elective surgery. I have been through every single emotion regarding this decision and even now faced with a date I still struggle. It might help you to know what my two overriding reasons are for the surgery: a) my life has become very small because of my UC, it makes no sense to me to have gone through my year and a half fight with breast cancer to then just spend my days not being able to leave my home, yes I have my good days but also a lot of bad days, life is for living and it is the quality that matters b) I believe without a doubt that chronic inflammation can trigger cancer, without any other drugs to take and being constantly flaring I guess my chances of colon cancer are high. I really feel for you on this. Sometimes even though it must be horrendous for people being rushed into surgery as a matter of life and death, there is no choice to make and let's face it, what a hell of a choice it is to make! I have also done a lot of reading on the long-term effects of UC drugs and I would say a lot of them are more worrying than the surgery. Life is short, I feel somehow I need to grasp it while I can. I am very happy for you to communicate privately with me through the journey I am about to take if you feel that could help at all with your decision xxx

I have a colostomy which probably doesn't relate to you. And I am one who was rushed into having the surgery. Having to wear a pouch 24-7 comes with a whole set of problems and changes in lifestyle. Having said that, the adjustment period went well for me and I live pretty normally.

I had a total colectomy done with a J-pouch in 2016 because the years of UC had destroyed my whole large intestine. The 9 months with an ostomy were the best ever. I had my reversal and for the next 9 months, I hated life. Having no real info on J-pouch, I assumed the 20+ trips to the restroom and the raw bottom were a normal thing for a new patient. After a round of GI and surgeon visits, they found I had Crohn's in my J-pouch and perianal in the 1 inch that was left of my rectum, so I went back to the loop ileostomy. For me, there was no choice in the beginning but this time I was 100% on board with the ostomy. Mine is a loop, so I still have my J-pouch which I take Entyvio (6 weeks) and it is now in remission. I will keep the loop forever unless something happens to the J-pouch.

Is a J-pouch something they have suggested?

I will say for me I am almost back to where I was before my UC, and life does have its issues but it's like a whole new world that I can go out in again without worrying about pain, food, or the restroom.

Hi Nicole ... I suffered the same as you. I now have an ileostomy, it does make life easier than having UC. I was given two days to live or take my colon .... not as good choice to make. I live in the UK and there is a drug called infliximab, which I knew nothing about at the time and my surgeon much later after I asked him why I was not offered Infliximab .. His answer was that my operation was cheaper than this drug!.. great!!

Not sure if you can try it over there in USA???

I have learnt quite a lot about THC cannabis oil ... I would definitely try this! I'm not sure if it's legal where you are... it is a powerful natural medication that has so many benefits... Please read up on a RICK SIMPSON... RSO oil..... He doesn't sell it but shows you how to make it...... I cured my 88-year-old mum's skin cancer using it in a few days.... YES a few days!.... Good luck!

I could have had the surgery 13 years earlier than I did, but I just could not wrap my head around it. If you are suffering, be brave, and do it. Life is so much easier. If you don't, evaluate each year, how much you have been suffering. I see most people are posting how much better it is to have an ostomy. Blessings to you. Feel free to reach out.

If I were you, I would look into the BCIR procedure. It is only done in California and St. Pete, Florida. That would be my first choice. You can research online. Ileostomy is no picnic. That would be my last choice unless it's the only option. I had an ileostomy last July, and life has not been what I was used to. I also had UC.

I asked about getting this about two years after having the ileostomy. Some people have inflammation from this as in colitis. With an internal body-cavity pouch, it is harder to control the output than the simplicity of a bag. Using a catheter to remove stool sounds complicated and messy compared to emptying an external pouch. What if it is too thick and hard to come out or too loose and comes out too fast? Talk to people who have it and ask about the drawbacks, the potential for leaking, etc. All these systems have their benefits and drawbacks. I'm sure it works for some people. You have to determine if you would be a good candidate. For me, I decided I just did not want another surgery and recovery time. The ostomy was working fine, for the most part, after learning and experimenting.

Hello Ruppy08,

I too had UC and I put up with it for 28 years before electing to have a total colectomy eleven years ago. My colon was trashed by UC and each subsequent flare-up was worse than the last. Getting my ileostomy was a big change and had/has several challenges, it took a while before the post-op inflammation calmed down to make getting the flange to seal consistently. All in all, I'm glad I made the decision to get it done. The others are right, read everything about your condition and discuss it with all of your doctors. In this case, there are no dumb questions.

You are adorable and I'm 'ing for you, if that's ok.

Sincerely,

Tom

Hi Nicole, I had chronic UC for 17 years then a bad flare up. I didn't respond to any drugs, so emergency total colectomy in 2010. I only heard about FMT (fecal microbiota transplant) in the last few years. I watched a program on TV; a lady in Sydney had it. Like me, she lived in the toilet. She went from around 50 toilet trips a day down to only one. Just something for you to find out about and maybe give it a go. All the best, little matey.

I agree that FMT is an option I definitely would have tried if it had been available to me. I suggested this to my nephew who also has UC but he hasn't pursued it. Of course, I hope this works for anyone who wants to try it. It's good to know that there are choices.

Thank you, Bain, for your reply! I'm so glad your work was understanding and flexible. That does make things a bit easier. It definitely gives me hope to hear that you're better than your old self. I can only hope that will be me soon! Thank you for the information about the surgery - I figured I would probably wind up with an ileostomy. I appreciate your wisdom on the topic. Thankfully, my husband is very supportive. When I first brought it up to him, he was pretty upset. But more so, I think out of fear that something bad would happen. Now that he's had some time to sit on it, he is definitely the most supportive. After all, he's the one who is here when I'm in and out of the bathroom, unable to sleep at night, calling out sick, having to track down wipes and paper towels while we're in public. He truly is a godsend.

Thank you VeritasSeeker!! I am so glad to hear that the FAA reinstated your medical certificate! I can't imagine being unable to do what you're passionate about. It's so nice to hear that you're able to enjoy the outdoors again too! It's so important for us as people, especially with a chronic illness, to be able to do what we love.

That's where I'm at too- about a year into seriously considering it. Initially I think it was my emotional response to hitting rock bottom. But now, after thoroughly researching, having a consult scheduled, and getting to hear from people who have been through it, I feel much more sound in my decision. I, too, am failing all of the major drugs and have been on and off Prednisone for over a year now- I just can't get on top of it. I'm so sorry to hear that you've been through so much, but in a selfish way, it's nice to hear a similar story.

Thanks for the tip on finding a good surgeon! I'm definitely going to do some research. I'm so glad to hear that your wife was able to help you through everything. I think the emotional impact is one of the main things my husband is concerned about. But since he's so supportive, I think I'll be okay.

RissyLauren,

I have two lanes of thought with this. One is to just go for the ostomy because I've seen that 50% of people with the J-pouch wind up with pouchitis. And I'd hate to go through all of that, just to wind up with the same disease all over again. However, my second thought is to maybe try the J-pouch, because if it works then I won't have to worry about the bag. And if it doesn't work, then I'll have had some experience with a bag while my insides heal.

What do you have? If it's okay for me to ask.

Thanks HeyHey for your reply! I'm so sorry you had to suffer from UC for so long! I've heard about the J-pouch and honestly that scares me a bit more than the bag. The idea that I could go through surgery, get used to the bag, then have that removed when the pouch is healed, then wind up with pouchitis-- that sounds terrible! I'm glad to hear you've done your research- I'll take your word at it!

Can I ask-- with your nighttime high output bag, do you have to take the whole system off every night? Or is it something you can leave the seal on and just attach a larger bag to? Sorry if I sound naive, I haven't actually seen one in person.

Thank you Ancient1! I really appreciate your response. I'm so sorry to hear that you've been through so much. I too feel like I just keep getting worse. 10 years ago, I could eat fairly well and go places. Now I feel like anything I put in my mouth comes out angry! I'll definitely ask a bunch of questions - my husband and I have quite the list going so far.