New and wondering about surgery

Hello,
New and wondering about surgery
I am new here but was diagnosed with UC almost 9 yrs ago.

Personally I think you are very wise. Surgery is a very tough thing to look in the face and it has been for me but, like you, my symptoms have been under control fairly well without having to do pred or the other nasty drugs. I have never had the surgery but almost every single person here who has has wished that they had done it much sooner and not gone on those nasty drugs. Almost every single one of them says the surgery gave them their lives back. Have you tried any natural supplements, probiotics, or diet changes? They can often help. Also, there is a new first line drug on the horizon which should be available within the next year which has been both effective and safe in the clinical trials. Many other things are also in the works so if you can hold off just a little bit longer you may be able to avoid surgery. One more thing about those bad drugs: They often work for just a few short years and then stop, making you move on to the next awful drug. Eventually you run out of options. Most of the time all they do is buy you time.

hopeseeking,

Welcome to the forum.

Are you interested in exploring other options as well?

The reason I ask is because when my doctor gave me a choice of surgery or remicade, and I refused both, I did find a regimen that worked and put me in remission.

For me, it was a combination of diet modification (gluten and dairy free), certain supplements like slippery elm powder, l-glutamine, lots of probiotics, ensuring adequate levels of vitamind d3, and LDN, low dose naltrexone.  LDN is not pushed by doctors even though it has been shown in several studies to put people in remission (myself included). It costs about $30. per month and has virtually no side effects.

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Hi Hope,

I'm on step 1 of 3 for a jpouch on August 31. That means I've had most of my colon removed. I'm still having a rough time but I feel better than I did with UC. I felt better two weeks after surgery than I did two weeks before surgery. Since the surgery like has not been a bed of roses...

Surgery recover went awesome.
Tapered off of pred and developed horrible arthritis (as, can't get up somethings, can't lift hand over head)
Developed a pyoderma gangrenosom (autoimmune skin ulceration) around my ostomy. This required biweekly visits to the ostomy nurse
Currently have a yeast infection under my ostomy wafer.
Still have some UC in my remaining colon that is probably encouraging the arthritis. Hopefully that will be gone with Step 2 when more of my colon is gone.

So, it's not all a bed of roses for me right now. But even with all of that I'm still doing better now than I did with UC. Make sure you examine all of the options you are comfortable with.

And a quick disheartening note...you want to stay off of some of the drugs because of hair loss? Well, the stress of surgery can also cause hair loss. Don't let hairloss be the deciding factor in your surgery choice. Let the actual health consequences guide you.