Surgery.... Really?

[MaxWagner]

I am 56 and brand new to this wonderful forum.

After six horrible months of pain, nausea, bloating, and very difficult bowel movements, I was diagnosed with a stricture in my sigmoid colon following a CT scan.

Attempts to complete a sigmoidoscopy and colonoscopy were thwarted by the stricture. My GI diagnosed Crohn's and ordered Humira to replace my Enbrel (which I have been taking for my AS). But he said he feared the blockage would not be cleared with the medication and recommended surgery. In the meantime, I met with the colorectal surgeon who echoed the sentiments of my GI about my prognosis and the need for surgery.

Extremely discouraged, I approved surgery which is scheduled for this coming week: Wed. April 13.

But in just the last 5 days, and one month after starting Humira, my improvement seems to have happened almost all at once! No more pain, no more bloating, no more nausea or bleeding... and bowel movements that are now returning to normal. And I am eating everything that I used to eat prior to going on my low fat, low fiber diet! I am TRYING to create symptoms... but nothing!

Has anyone else had the experience of Humira having such a REMARKABLE and rapid effect on a stricture that is on the verge of surgery?

I am obviously going to postpone this surgery -- which seems to make logical sense. What do you think my Doctors will say? Why am I "fearful" of their reaction?

It seems like surgery should be an absolute last resort. Is there another reason that my Doctor's might still recommend going ahead with the surgery?

I would love to hear and benefit from other's experiences.

 

[troydanielbecker]

A wonderful predicament, although it sounds like it's still nerve-wracking. So much mystery... I, too, will be curious about your doctor's response and to hear from others, perhaps who have had something similar occur?

 

[Keona]

I agree - it ought to be a last resort! It is sad you are fearful of your doctors reaction... is it possible to have another CT done - whatever it was that confirmed you had a stricture?? Whatever happened to the notion of supposedly having open communication with your doc? I think it is sad that it isn't like that anymore....and more like a big business... If it has cleared up with the humeria, then they wont have anything to fix anyway... I'd call them and let them know what is going on... they should be happy for you if the Humeria worked!

I am happy to hear you are doing a lot better
Welcome to the forum!

 

[nomad]

Wow! Max, what a great experience. I'd say talk to your doctors and do not go under the knife without further clarification - it's your body, and surgery will take a part of it away forever.

I had 80cm of intestine removed in 2006, was so afraid of it all but quality of life did improve enormously afterwards. However, had there been an alternative means of dealing with the strictures at the time, I would have gladly spared my poor intestine...

 

[Crohn's 35]

:welcome: Max, glad you found your way here. That is amazing for you to be feeling so well by using Humira, most times meds dont fix strictures. But hey, we are all different. I know about surgery , had two resections and was headed for a 3rd,but found my way of dealing with it. I really hope it continues to work for you. Like Keona, not sure how your doctors will react. If you are in Canada, you may regret it, because the waiting list is long and doctors want treat who needs it. If you are in the US , I would say you have saved yourself alot of money. There is always another surgeon if they get peeved. It is YOUR body and YOUR life and I would do the same. Good luck and keep us posted on what the docs say and how you are doing. Kudos!

 

[MaxWagner]

Surgery... Really? Update

Thanks to everyone who read and responded.

To update my situation, I spoke to my GI and surgeon yesterday and they both were pleased with my improvement, agreeing that surgery could be “held off.”

However, they both also speculated that whatever the short-term good news, the underlying condition had not been solved and my symptoms would eventually return. And because of the “inflammatory mess” (my doctor‘s words) that presented itself in my CT scan 6 weeks ago, my GI still thought my situation warranted further and immediate investigation. Malignancy, although even less suspected now given my improvement with Humira, has not been ruled out either.

Talk about a “buzz kill”……

So the tentative plan is to schedule another round of blood tests and another CT scan. And while there is a planned conference between my two doctors scheduled, my GI still thought it might still make sense to “look under the hood” and do a laparoscopic exploration to see just what is going on. Because of my individual anatomical challenges and current condition, the GI was sill pessimistic about completing a successful colonoscopy.

How common is it to do such an “exploration?”

Clearly, the Humira has worked wonders for my condition, and has done so in just over 30 days.

I will provide periodic updates for anyone interested in how this turns out.

 

[ameslouise]

Hi Max - Congrats on your improved health and avoiding the knife for the time being! Glad the docs agreed you could hold off, and that they are ordering more tests to see what's going on.

In the meantime, enjoy feeling good. I hope the need for surgery is permanently thwarted!

- Amy

 

[Astra]

Hiya Max
and welcome

PHEW! That was a close shave!
I'm glad they've put it on hold for now, gives you more time to adjust to the Humira, hope it continues to work for you.
In the meantime, the exploratory lap doesn't sound too bad, I've had one of those where they have a good mooch round. It's only after, that it hurts, cos of the carbon gas they pump into the pelvic cavity, it shoves everything out of the way so they can see better, and then you fart for England after!
stay well
xxxx

 

[Misty-Eyed]

Hi Max, welcome to the forum.

I am in a similar postition to yours. My stricture (well the longest one) is also in my sigmoid. It's impassible with an endoscope but I'm feeling really well. At first there was talk of exploritory surgery with a possible resection until I saw my actual GI who decided it was silly as I was feeling too well. But since then.. well the week after the consultation, I was in hospital with a partial blockage of another stricture.

Now they're concerned about how long I've had crohn's for (18+) years and the length of time I've had the stricture for (5+) years which means they've not been able to monitor the rest of my colon for anything nasty lurking in there, so they want to take the whole lot out now!

So, not to scare you, but I think more tests are a good idea. It's a silly thought that someone could need surgery and feel so well, but unfortunately, sometimes the nature of the beast

You never know though, hopefully your stricture is doing better with the humira!

 

[nomad]

Congratulations Max, this is fantastic news - also the fact that your doctors seem wise, they seem to be "on your side", which sometimes does not seem to be the case. And their willingness to check further while all seems well sounds even wiser to me.