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Does dysplasia of the colon really leave no other option than cutting out colon?

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Ulcerative Colitis
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Posted 3/31/2017 9:42 PM (GMT 0)
I have been on Remicade for 4 months. I have had UC mod-severe for maybe 8 years. I never took any drugs for 7 years, I just survived. The last year I got much worse and started getting really bad screaming pain in anus so I said I would go on prednisone and see if I could get on entyvio that I researched about. I only took predisone one time before like 5 years ago for 2 months which was horrible and I swore I never wanted to take it again. So anyways about 5 months ago I started 2 months of 20mg prednisone, then a month later started taking remicade infusions.

After 3 months the doctor did a 3rd scope and said I looked 50% better in the scope than when I started the prednisone and remicade. Even seeing 50% improvement according to him in like 4 months, every time I go in to see this guy he rambles off a bunch of manipulative psychological phrases meant to intimidate me into getting my colon removed. Today was the last straw, he claims I have pre cancerous cells in my colon, and I have dysplasia of the colon and the only option he is going to give me anymore is removal of the colon now and says the remicade has done all it could and is not going to do anything further for me.

I got into a very angry argument with him after he told me all this in which he also said that "NO OTHER physician is going to let you try entyvio to try after you have tried remicade and have dysplasia of the colon". When I first came to see this guy 5 months ago I requested to take Entyvio, to which he refused, most likely because he wanted to save face, and instead said I must try remicade, I only agreed because he gave me his word that if the remicade didn't work that he would let me try entyvio or other drugs later, today I found out that he was lying all along and never would let me try entyvio and claimed NO OTHER DOCTOR would ever allow it now either. I have always got this "save face" attitude from this guy like he does not want to have his symbolic power usurped by any patient wanting to make any decision.

I refuse to live my life with a "bag as a colon", tied to a hospital for the rest of my life and have all sorts of other things happen to me as a side effect from such a surgery. I am fine with dying. I would just like to know if "pre cancerous cells in polyps and dysplasia of the colon" has ever been reversed by other drugs such as entyvio or if anyone knows anything about dysplasia of the colon how long do you think I will live since I refuse to get my colon cut out? 5 years max? I am 47 years old.

I read this article, if anyone understands the terms can you give me your opinion on it.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3211818/

Thank you
James
Posted 3/31/2017 10:26 PM (GMT 0)
If I had cancer, I'd definitely have surgery. I say that because I had surgery for UC and I am doing fantastic. I know in your case, you survived without meds, and without a lot of flare ups, so surgery seems drastic - but better surgery than death - especially with current surgical techniques leaving you nearly back to your preUC self. I say almost because you will go to the bathroom more than you did with your colon, but 5 trips a day is better than suffering through chemo and possible metastasis of the cancer - and death.

You're uninformed about the surgical options. You do not need to frequent doctors or hospitals after surgery. Actually, my life has been exactly the opposite. Since I got the jpouch, I very rarely go to the doctor, and when I do, it's not for something colon related.

You should get a 2nd opinion from an unbiased GI. Don't let this guy bully you into feeling like his opinion is the only one that matters. I wouldn't trust this particular doctor... it sounds like he's been pushing for collectomy for a long time. Weird for a doctor to bring that up when you were perfectly stable. Now, with dysplasia, if it's true, it makes sense to bring it up.

Consult with a colorectal surgeon just to familiarize yourself with the surgical options. You may not fear surgery so much when you see that the only difference is a few extra trips to the bathroom and small scars...

dysplasia isn't reversed by any drugs & it's quite dangerous & those drugs could potentially make you sicker, as most of them reduce your immune system further.

Remicade has the highest success rate for treating UC. It's also often required before other drugs - if you want your insurance company to pay. It's possible he was just following protocol.
Posted 3/31/2017 10:33 PM (GMT 0)
You sound like me before surgery. I swore I'd rather lose an arm than my colon. I am SO thankful I still have both arms... In fact, I'd rather live without a colon than lose a finger. I do wish it was just an appendix or something like that, but such is life.
Posted 4/1/2017 12:59 AM (GMT 0)
Monitoring dysplasia means more frequent colonscopies (every 6 months or something). Colorectal cancer is very slow moving and it could be a while until it progresses.

J-pouch is the most recommended procedure and in the end no colostomy bag or appliance is needed on a permant-basis. Rather, you poop out your bum as you do now. The large intestine is removed, the end of your small intestine is made into a j-shapped pouch (which stores poop as ypur large instenine now does), the pouch is attached to your sphincter. Aside from a few small but cool scars on your lower abdomen there's no sign you had anything done. Depending on your current health and if you're on steroids their is 1 surgery, 2 surgeries, or 3 surgeries. When multiple surgeries are necessitated you will temporarily have an appliance for several months but the subsequent surgery removes it.

Surgery is yet another treatment that gives UC patients their quality of life back. It's helped many forget about uc urgency, flares, and uncertainty. So fear not, as it's a good solution.
Posted 4/1/2017 7:21 AM (GMT 0)
Get the biopsy report and see what it says about the dysplasia. If it's high grade, colon should come out. If it's low grade, frequent scoping is ok for the time being, but be on high alert that colon may need to come out. If it's indeterminate dysplasia, or some sort of mid-grade, get a 2nd opinion from another pathologist.
Posted 4/2/2017 3:43 PM (GMT 0)
Honestly, I'd have it out. People fear the unknown, but I have had an ilesostomy before. 12 years ago, pre UC, I had an infection that ruptured. I got a life threatening infection from it and I had to have the bag while I healed from the surgery. It was rough at first, but that was due to the shock of it. Two weeks before I never would have dreamed I'd have an ostomy.
My mom is an ICU nurse and she asked some of her friends at work how to help with the irritation and leaking I was having. They suggested this ring thingie and she got them. Life changing. No more irritated skin, no more leaking and it became normal. When I went to pee, I empties the bag, wiped and went on with my day. It was under the waste of my shortest jeans, so no bag showed. I showered, bathed and it was winter, so no swimming. I could have though.
I do hear of complications from loop ileostomies and J pouches, but end ileostomies are easier. I have also read people who were like you. They went into surgery kicking and screaming, but then once they are symptom free, wish they had done it years ago. No more doctors, scopes and meds.
If I got next year and I have pre cancer cells instead of cell changes from inflammation, my colon is out. I've had the bag before and I know it isn't bad. I'll do it again.
Posted 4/2/2017 4:59 PM (GMT 0)
It will always boggle my mind that people would rather die of cancer than have their colon removed. But ok, to each their own. You could also ask if you're a candidate for a j pouch. Good luck.
Posted 4/6/2017 3:46 AM (GMT 0)
You'd rather die? Boy your life must really really suck! I NEVER want to die as I love every waking moment of my life even when my UC was at its worst. I knew very early on after my diagnosis that if it came down to living in pain or fear of colon cancer that I'd have my colon removed WITHOUT hesitation!! I first spoke to a lady at length about her colostomy bag and how difficult it is to live with one. After talking to her I was convinced that it sounds worse on paper than it is to actually live with it. You can do EVERYTHING you normally do and never have to miss out on life. Not sure where you get the information that once you have your colon removed your tied to the hospital?

For me with a bag I'd still be able to take my boat out and go fishing, hunting, 4 wheeler riding, family get togethers, eat my spicy foods like crawfish and travel the world with my wonderful wife/best friend. She told me that it just takes a little extra care like emptying the bag multiple times a day so that the gas or smell doesn't build up. To me that is fine because everywhere I go in life there are plenty of bathrooms. Ideally if you travel a lot like I do then you'd carry a small bag with your extra supplies in it.

When my UC was really bad I carried a small bag in my vehicle everywhere we went because I always had a change of clothes, medicated wipes to sooth my bum, my medications, etc. I had anal leakage so I changed underwear sometimes 5-6 times a day but it was no problem.
I would just pop into a Mcdonalds bathroom with my little travel bag, clean myself up, put my dirty clothing into a little plastic bag, wash my hands, and return to my car and be back on our way. Minor inconvenience YES but nothing I couldn't handle and I was able to enjoy going to all the Mardi gras parades this year, festivals, flea markets, movies, etc.

I imagine a colostomy bag would be the same, I'd just have to pop into a public restroom once in a while and take care of business. No reason life would stop for me and I wouldn't let it get me down. At least I'd have no more UC pain, no bum discomfort, no mucus discharge, etc.

I think your depressed about the idea of a bag and think it will change your life. No one even has to know about it if you don't want them to. Wear slightly bigger clothing and be diligent about the bag maintenance so it causes no problems. If anyone asks about your little travel bag you take into the restroom just tell them you keep your medications in there and some wet wipes smile

Of course before ANY surgery I'd ALWAYS get a second opinion. Even if you have to travel to the next town oever to see a different Dr., I'd do it.
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