Colectomy

Hi! I have had UC for about 35 years. I have tried Remicade, Humira, Entyvio, Stelara.. which according to the top neuro ophthalmologists..caused me to lose my sight in my left eye. There are a few more..
pills which are biologics.. but can cause blood clots.. which I once had in my legs.so there is nothing left.. except for me to have a colectomy. I am worried about having a bag .
Please if you have had a colectomy.. let me know the pros and cons.
Thanks in advance.

Hi the pills which you are talking about (xeljanz) are not biologics but it's true they are associated with blood clots, at least in arthritis patients over 50... there are some other (non biologic) drugs including zeposia but I don't know much about the safety profile.
Hopefully someone who had a colectomy will be able to help you.
Anxiousaries - I think the stats are around 20-25% of UC patients have surgery, but I haven't checked the literature on that for a few years so it might have changed. Certainly not inevitable for everyone.

65 like you I was worried about a bag when I had surgery in 2018. I had bag for 7 months. I'm a big strong guy(6'5-230lbs) and I am a contractor who does a lot of physical work. Bag ended up being not such a big deal. I had many days when I forgot I had it on and needed to empty it. I could hide it under a baggy shirt. Changing bag became a normal thing when needed. I had UC for 32 years and it was time for surgery. I made that choice while discussing with my Drs/surgeon. I chose not to to on biological bc of potential side effects and not wanting to be a slave to meds forever

You can ultimately do what you feel you need to do, but if you haven't consulted complimentary medicine, then you haven't tried everything. I know someone who has had UC for 21 years and she recently entered lasting remission for the first time ever. Her bowel has permanent scarring that still affects her function, but she is happy as can be. I personally had uncontrollable UC for 7 years and this year I found something that basically put me into instant remission, and it was outside of the scope of conventional medicine (although an MD discovered it). Even before this year, I had tried things that really downgraded my symptoms a lot.

The choice to give up and get a colectomy is very personal. I have empathy for those who decide to do it and don't blame them whatsoever. The road can be long and arduous. Sometimes we can't deal with it and just want the nightmare organ removed. You are to be commended for dealing with UC as long as you have. You deserve a gold medal just for that!

I am just here to say that there is a lot of very interesting and cutting-edge knowledge out there now, so if you decide to hold on a while longer and go another round, you might be surprised. Best wishes to you.

Beave--you made me laugh out loud.

Hi. I have both UC and Severe Fistulizing Crohn's. I had very fast healing with Remicade which led to scar tissue, obstructions and a colostomy. My Colorectal surgeon left my anus and the Hartman's pouch (part of my sigmoid) in case we wanted to try to hook me back up. Once I had surgery I felt so much better. From my colostomy up I feel pretty good. I still have issues with narrowing because of the scar tissue.... But I feel much better from my colostomy on up. I am not going to be reattached and will have my anus removed probably next year.

I still have issues with the anus/rectum and remaining sigmoid area. I think that portion of my colon causes me to have many of the symptoms of Crohn's...(nausea, night sweats, fatigue, psoriasis... Etc. ) plus that's the portion of my colon that is fistulizing.

Wearing a colostomy bag is what you make it. I don't have any problems with it. I never forget it's there....because I am just so grateful for it. My colostomy saved my life and gave it back to me at the same time. My Colorectal surgeon once told me that the individuals that were the sickest with the poorest quality of life usually adjust and appreciate their ostomy much faster than someone that was not as sick. I can understand that. My quality of life was awful. I could not control anything and I could barely leave the house. (I carted a port a potty around in my back seat it was so bad) There is a learning curve that can be frustrating. There are challenges with it at times.... But my life is absolutely better since I was given an ostomy.

On the complementary medicine--nothing I tried put me in complete remission. I wish I had had the surgery sooner and utilized "complementary medicine" to complement my colostomy surgery, Remicade and Methotrexate. The SCD diet and supplements I utilize help keep my symptoms under control along with my prescribed meds.

If you have any questions I will gladly answer them.

Clo

Post Edited (clo2014) : 8/15/2022 9:11:10 AM (GMT-7)

absolutely...just poking a bit of fan clo....well done for your post.....however it is a known fact that if you try Dr Pravda's anti-oixdant theory....it will also help your spelling!!!! ;-)

HAhahahah! Thanks for the laugh of the day (anex/anus).

A good one! You can turn off autoreplace.

q

I was once writing an email to one of my students and his name starts with "As" so I wrote "Hi As" and the autocomplete finished it with "shole". Thank god i noticed it before I hit send.

VanJordan said...


This is the kind of low caliber comment I have come to expect from the usual suspects. Finding one single error in an entire post that was good hearted so that you can make fun of somebody .

I was posting with my phone and it auto-corrected.

This community is full of vile, hateful, cynical people and it's pathetic that the mods don't stop it.

Always playing the victim. Kevin_H made some good points, maybe you should take them to heart.