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 2nd 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 a 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!
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
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.
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 sooo 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. 😎
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 appt last year and told my Dr 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 2nd 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 definitrly reach out to a local support group.
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 Crohns 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 Crohns, 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 collectomy 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 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.
I made the decision to have the surgery and ileostomy after 10yrs 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 everyday, 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.
Last edited by VeritasSeeker on Thu Jun 27, 2019 12:30 pm; edited 3 times in total
Thank you for sharing your story. I know how difficult a decision this is. Are you thinking of having Jpouch surgery or going right to an ostomy if you don't mind me asking?
I also had UC since age 17. Finally had 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. 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 showe, 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!!
Hi. 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.
LThe 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.
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 have not kept me from doing anything so far. I have traveled many times Internationally, go swimming, been zip lining. I could not imagine always have to worry about a bathroom or being in so much pain. Hope everything works out for you.
lI'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 mne are very similar. I was diagnosed with UC when I was 14 and feel that I lost my entire adolesence and young adulthood because of the different problems associated with this disease. I was among th 10% that experienced the secondary issues, like the wasting disease, pyrodermagangrenosis, 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 succesfully since I couldn't sustain much activity for very long. Finally, when I was 28, when I had another episode of the pyroderma...... 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. I n reality an ostomy is a life saver and, for me, the only downside was cosmetic. I have never had any problems with my ostomy accept for some skin irritation for which I find a solution. i totally agree that the MOST important 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 worse 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 Sepetmber. 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 overiding 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 alot 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 alot of reading on the long term effects of UC drugs and I would say alot 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