Seeking Advice - Elective Colectomy/Ileostomy Experiences

Thank you Sunasea!! Prayers are always welcome. Thank you so much.

Mitdad,

Wow!! 23 surgeries? I can't even imagine, but so glad to hear you're doing much better. And I am so, so sorry to hear about your wife. But it sounds like you two had a great life together. And based on your name (MIT), I'm assuming you have at least one child to be super proud of!

Yeah, I'm tired of being on all of these medications. The side effects are no fun! Thank you so much for sharing your story and the advice.

Thank you, Looking66! I appreciate you sharing your story. I'm so sorry you didn't have a choice in this - it must've been so hard to have it thrust on you.

Thanks tcfolsom! I'm so sorry to hear that you dealt with so much for so long, but so happy to hear that you feel free! Honestly, that's what I'm looking forward to. So far I've worked with 6 GI's, the last two were the most thorough and long-lasting. The first 4 were while I was moving around for school. None have been able to help. After researching for about a year and hearing everything this community has had to say, I feel confident in my decision- as long as the surgeon doesn't tell me no. Being free sounds so nice!

Hi zanzi1! Thank you so much for sharing your story! I'm so sorry to hear that you went through so much. I can't even imagine having to deal with more than just the UC. I definitely feel a connection to your story. I too pushed through school and a relationship, got married a few years ago. I agree- why should I keep forcing myself to suffer every day when I have the option to, in a way, cure myself of the disease?! I understand that the ostomy comes with its own learning curve and possible challenges...but it sounds so freeing!

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thank you, Bemused! I really appreciate your response and willingness to share such private information! Congratulations on getting through breast cancer! What a thing to survive through! And now you're going to survive UC! I would absolutely love if you wouldn't mind sharing your experience through prepping, having, and recovering from surgery. It would definitely be helpful for me to get an "inside scoop" if you will.

The meds they put us on for UC and Crohn's are quite fascinating. I've been on Humira, Simponi, and Entyvio in terms of immunosuppressants. I have also been on Prednisone (devil drug) and Uceris (completely messed my menstrual cycle up and hasn't been the same years later). My mom is having the hardest time with my likely decision to have surgery. And what I've tried to explain is that all of the meds I've been on have insane side effects. I just think the actual surgery and taking out an organ is what's causing her so much stress.

I wish you all the best! Good luck on your surgery. I would love to be kept in the loop, if you don't mind.

TadKapa,

Thank you for your response! I'm so sorry you didn't have a choice with this, but I am happy to hear you're doing pretty well. I definitely expect quite the learning curve and adjustment period if I wind up with a colostomy or ileostomy.

Hi Johnsonk2! My goodness, it sounds like you have been through so much! Your story is exactly why I'm worried about the J-pouch. The idea that you can go through surgery and this entire process, just to wind up having the same disease of the pouch is terrifying to me.

If you don't mind me asking- Do you have to do Entyvio for the Crohn's in the pouch and live with an ostomy? I figured they could just remove the pouch if that didn't work? If that's not true, that might help me even more in deciding for the ostomy first.

Thank you so much for your response!

Hi Pete B! Thank you so much for your response! What a scary thing to be told! You definitely didn't have much of a choice!

Yes, we have that here - it's called Remicade. It's the only biologic/immunosuppressant I haven't tried. I did Humira and Simponi injections at home first, now am on Entyvio infusions. Started at every 8 weeks, now having them every 4 weeks.

We do have CBD oil here, even regular old marijuana is legal now.

Thanks Pietrzak for your response! I've never heard of the BCIR! I just looked it up and took note of it to mention to my Dr/Surgeon. I really do appreciate the information.

Thanks HeyHey for your response to the BCIR message! That's definitely a good point, about it possibly being similar to the J-pouch. I included it on my list and will see what the Dr says. I definitely want to rid myself of UC as much as possible!

Thanks Bonny! I appreciate the response. I work in a hospital and have heard of FMT. Mainly we use it for C. diff or other infections since it's about introducing good bacteria into the GI tract. But I'll definitely do some research about its use with UC patients. Thank you!

I would love to know what you find out about FMT. It sounds like such a natural way to deal with this. I really have issues with taking meds, all chemicals. I agree that Prednisone is a devil drug. It has lifelong ramifications and in my case, basically offered short-term relief. I'm so happy I don't have to think about this anymore. I just want to point out something. Anytime you leave part of your intestine, as with the jpouch, you're still leaving tissue that can be attacked by your immune system.

Hi Ruppy

I also had UC for about 13 years. In the later years, it was just a continual flare-up until I was on prednisone full time, which caused even more complications. I was in the hospital more than at home, having IV steroids to try and keep the bleeding under control. I was a single mom at the time with a 6-year-old son. I couldn't play with him, I had to try and time going to his school in between the many trips to the toilet each day. I lived in constant fear that my bowel would perforate as this had happened to my great-grandfather who had also had UC (back in the days before all the drugs we have now were available)

The prednisone caused me to get osteoporosis and I could hardly walk. My doctor told me if I continued like this, I would be in a wheelchair by age 40. I was 36 at the time. I had two options given to me, surgery or one last even stronger drug with numerous side effects. A really hard decision to make - even when you are really sick. All the questions you are asking I also asked. You are so lucky to have a supportive husband. You will need him after the surgery as I won't lie, it is very painful for a while. But slowly as you recover from the surgery, you realize how much better your life is. No more drugs to take, no more running to the toilet or being afraid to go out in case you have an accident. Don't wait until you are too sick as the recovery time from the surgery is longer if you are sick beforehand.

I am one of the lucky ones. After the surgery, I was told pre-cancerous cells were found in my intestine - I don't have to worry about that now as it is all removed including my rectum so I can never have a J Pouch. Life is different with an ileostomy but I do not regret it. Once you work out how to manage it - your nurse will help you with this - and get over the feeling that everyone knows you have a bag, you will feel so much better and will be able to enjoy life

Good luck, it's a journey but is worth it in the end.

Hi Ruppy08,

I suffered from UC for 28 years until colon cancer caused me to have my surgery. UC was a nightmare without question. Some drugs helped, most didn't, the only one that consistently helped was prednisone.

I'm 30 months cancer free, so I got that going for me.

As for my stoma and all that goes with care of it, here is my take:

It simply moved my "problems" of incontinence, skin irritation, smell, etc, etc to a more convenient location. I suffer from equipment failures on a regular basis, skin irritation, terrible gas, bloating and so on, just as I did before. Quite literally the only real difference in my life is where the mess ends up. I still carry extra clothing with me nearly everywhere I go and I carry extra bags/barriers etc on any outing longer than a few hours.

I could hide my UC if needed. Like you I'd skip meals before important events (not the extreme you mentioned) and I used to go to the bathroom dozens of times a day to help avoid problems. Instead today I find myself emptying the bag a dozen times a day, having to burp it another dozen times a day, changing the bags at best every two days, often daily and more often in the middle of the night due to failures, even if/when I have new bag/barrier/etc in place hours before bed.

Now, don't think any of this has ever stopped me. It hasn't. I race cars for a hobby and was a professional race car mechanic for nearly 20 years. I've never let this crap (pun intended! haha) stop me from living. My friends have always known what was up, by not hiding things I've been able to live my life. In all these years the only time I had to not do something as planned was from bag/barrier failure, not incontinence.

What to take from this: Hell if I know! :) I just know my experience has not been all rosy and grand like so many others and I think it's important for you to go into this eyes wide open. From the research I did after the fact (my bad, I stupidly took my surgeon's word for everything) is that there are two camps: Success and life is better or Fail and life is the same or worse.

If you go forward I hope you end up in the Success category. Good luck!

Bryan

Just curious, do you still have constant pain or didn't you have that with UC?

I wouldn't say constant pain, but definitely pain every time I use the restroom and then abdominal pain off and on throughout the day.

Thank you bryancohnracing! I appreciate your honest response. I am so glad to hear that you're cancer-free - congratulations! But I am so sorry to hear about the issues with your bag that you have been dealing with! That is definitely one thing that I am afraid of - that I'll wind up with the same issues, just in a different location. However, I really like what you said at the end. I feel like if I don't try, then I'll always wonder... and who knows, maybe it will work out. And if I do try and it doesn't work out, at least I tried.

I have Crohn's. Getting an ostomy was not elective for me. What are your options? I delayed mine for a while due to fear, but was at the time in enough pain that I eventually decided it was best to have it. I have never regretted, even with the nuisance of it.
I have a lot of gas, so not sure I can help you with that one.

Thanks, Jennie. I try...lol

Bain

The cannabis oil is very good to use and it helps a lot.