Feeling Lost After Cancer and Ulcerative Colitis Treatments - Seeking Advice

Hello all my dears. This is for the first time I'm posting in this group. I delivered a baby in 2019. After just 3 months, I was diagnosed with CA colon and severe pancolitis. I woke up from surgery, and they did a right hemicolectomy and wanted me to manage the rest of my colon with meds. But post-surgery recovery was a nightmare. 12 rounds of chemo and trying every med to control my diseased colon. Steroids took me over, Imuran, biologics, and what not. I couldn't recognize myself in the mirror. Just after 1 year, I had a relapse and was now stage 4 with metastasis to the ovary. Again went through surgery laparotomy to remove the tumor. I begged doctors before surgery to take my colon out as I had more side effects and suffering from ulcerative colitis than the cancer itself. But when I again woke up from surgery, they took the ovary out but my colon was there. I got furious and frustrated. Surgeons said your colon doesn't look too bad. It can be managed by meds. Which again followed by more chemo. Due to chemo side effects, particularly diarrhea, I quit it and decided I would die if I continued this way. I consulted a naturopath/steroid but again the same suffering. My colonoscopy shows ulcers, etc. but not that aggressive. But I'm steroid dependent and the doctor wants me to again try different biologics. I'm lost and don't know what to do. I'm afraid of recurrence. But for sure ileostomy surgery does cross my mind. Kindly advise me. What should I do? Should I again force my doctors for surgery or should I continue trying meds?

If an ileostomy can fix your issues, why continue all the medications that seem to not work? I know what I'd do, but it's a personal decision. Good luck. 

Hello Nain.
Thank you for sharing your story with us.
As Alex has said, these things are personal decisions and we can only express our views on we might decide in these situation.
I went for elective surgery to obtain a stoma after years of incontinence and pain. Given what I know now (hindsight is often more enlightening than the reality of the moment) I would have gone for a stoma much earlier than I did.
However, the contemplative period prior to that decision, did help me to adjust much quicker to the stoma when I finally got it.
I do hope that you are able to weigh up all the pros and cons in order to reach your own decisions soon and I hope it all works out well for you.
Best wishes

Bill

Hi Nain, you know your body better than any doctor. I insisted on a permanent ostomy and it gave me relief from pain and peace of mind. I think you should tell your doctors exactly what you want and why. Sending you healing energy, I wish the best for you.

Dear Nain, I am glad you came to this website - it helped me so much in making personal decisions.
Good advice from these folks - I would encourage you to gather as much information as you can and move forward with what you feel is the right decision for your own body and how you feel. You are going through some difficult times right now so try to stay strong and positive - sending best wishes your way. jb

Words of Encouragement from Ostomy Advocates I Hollister

Hi Nain, sorry to hear you're having health issues. I've had an ileostomy now for 30 some years, and it hasn't always been easy due to Crohn's/colitis. The Crohn's causes scarring and strictures, resulting in blockages and being in the hospital. Before the surgery, I was very sick and on prednisone and other meds before there were biologics, so I was glad to have surgery and get away from the meds and doctor appointments, and also the stress on my family. Good luck with whatever is your decision.

Nail, I am so happy you have found the site. I agree that you can only make the decision. I can say for myself that I wish that I had my ileostomy much sooner. I had UC. Talk to the doctors and educate yourself. Best wishes for you.

Hi Nain, are you receiving care in India or another country? I'm not sure how the healthcare system works in India compared to where I'm at in the US. Within our private insurance, there is a PPO or an HMO. With a PPO, referrals are not required and you can see whatever doctor you choose. What I was told here is that a gastroenterologist will try everything to save your colon, whereas a colorectal surgeon will generally be on board with surgery because that's their field. By the time I saw the doctors that I needed to, my colon was way beyond saving.

What options do you have for getting another opinion at a different hospital/healthcare system?

Ulcers hurt even if they don't look that aggressive, and it means the colitis is not under control. You said you quit the chemo due to side effects? How is the diarrhea/bowel control since? Has your cancer spread anywhere else since they removed the ovary? You have a lot of different factors in play. Let's say you choose the ileostomy route, you and your surgeon would need to decide if it will be permanent.

How are you managing with having a little one and going through all this? Do you have a good support system?

G-Day Nain, (Namaste kaisa hai) I hope I got that right. Dear Nain, I also had Ulcerative Colitis for many years, so I know how you feel, but you also have other things giving you so many problems. I can only say what I did and hope you get ideas from it.

I had my colon removed 20 years ago and had a J-Pouch fitted, but I had 18 years of big problems, so I decided to go for a complete ileostomy with a Ken Butt as well. Nain, it was the best thing I did. I got rid of the pain and all the problems, and I now LOVE my stoma. Please, Nain, I hope you can get the same pain-free results if you decide to go for the ileostomy and get rid of that colon.

Aapako kaamayaabee mile Regards, IGGIE

Update: Hello to everybody.

Thanks for replying.

Today, I talked to the surgeon about having a permanent ileostomy (as I don't want to go for any further surgeries).

But two of the best surgeons denied and don't want to operate on me because of my history. They think it won't be a good idea. I pressurized them, but still, I think they don't want to. Feeling lost.

They say try biologics. There are many biologics available. If one didn't suit you, try another.