Surgical Options

[BowelMeOver]

My husband was diagnosed with pancolitis in March of this year, and, after several hospital visits, a few blood and iron transfusions, and numerous medication combos, he is actually feeling "pretty ok". He still has mild cramping, but has not bled in over a month, has mostly formed stools, and no longer has urgency. I have made a spreadsheet of all of his lab results, and we are seeing the improvements there as well.

He was previously on Asacol and then Lialda, but had severe allergic reactions which landed him in the hospital. He has been on 200mg of Imuran daily since May 20th, and added Humira to the mix on June 7th. He has also successfully tapered off of prednisone 2 weeks ago, having been on it since March, with no ill effects. I was really hoping more time on these meds would increase his improvements, but the actual images from the colonoscopy are pretty horrible.

We were aware that there was always a chance that surgery might be needed in the future, but with all the improvements we've been experienced, we were quite shocked to hear his GI tell us after his colonoscopy last week that surgery was needed to remove the whole colon, and that it couldn't wait till next year. (Our plan B, if medicine didn't work, was to work overtime for the next few months, and use his 2 week vacation time in January for surgery, if it was needed)

My confusion is in what options he has available to him, and while trying to remain patient until his follow-up consultation with the GI, I've been perusing the surgery and stoma forums here, and it's making me dizzy. Help!

His whole colon is affected, but there has never been any disease activity at all in his rectum and anus, and his small intestine has always been clear. I know this isn't a guarantee that he doesn't have Crohns, but the scopes, biopsies and blood tests all point to UC.

Does this mean he may qualify for a reconnect from his small intestine to his rectum, without the need for a j pouch and a temporary ostomy? I've read many posters state that they were reconnected directly, but the majority of them had Crohns, which confuses me even more as I thought Crohns could always start attacking the rectum and anus after surgery?

I know that without the large colon, his bowl movements will be more watery, but would there be a difference in consistency if he were to have a direct connect vs a j pouch? Meaning, does the j pouch act as a stop off point, and hence slow things down any?

I've heard of people with an ostomy having to wake in the night to empty it, and I'm wondering how does one know they have to empty it if they are asleep? Yikes!

And lastly, will he suffer with short bowel syndrome, or is that only something that results from surgery on the small intestine?

I really appreciate the time you all take to share your stories and advice with us nervous newbies, and look forward to continuing to share our story as it continues to develop.

 

[nogutsnoglory]

I'm terribly sorry to hear thst the G.I. felt that it's necessary to remove the colon. I think that it's really important to get a second and sometimes even third opinion before approaching surgery especially for such a major endeavor.

 

[BowelMeOver]

Thank you for your response and your concern. I too wish my husband would consider getting another opinion, or 5, but he's been hit pretty hard in the short time since diagnosis, and is hoping the surgery will be the light at the end of this tunnel. He isn't willing to try any other medications, as the high dosage of Imuran along with the Humira, with all the scary potential side effects, have failed to do anything to heal his colon.

I was hoping he would want to wait a little longer for this medicine combo to start doing it's job. His initial Thiopurine test had his 6tgn at 111, but just a month later, it was at 151. Still sub-optimal, but rising. His 6MMP was 3237. His last CRP was 2, and even his hemoglobin is rising on it's own with no supplements.

I would be willing to try anything to save his colon, but he reminds me that he is the patient here, and I can only fight with him, not for him.

 

[nogutsnoglory]

It's true that he is the patient and needs to make the ultimate decision. I'm sure he is frustrated and sick of being in pain and is just desperate for a solution. He may very well respond to a different type of medication but it's dependent on the degree of disease in his colon, do you know if it's mostly inflammation or scar tissue? If it is mostly scar tissue at this point then surgery is probably the option because no medication can have an influence on scar tissue.

One thing to also remind him about is that surgery does come with risks and complications and although major progress has been made in terms of Crohn's disease surgery there are still risks. Removing your entire colon comes with consequences as well. It will result in him needing a permanent bag and he might have diarrhea for the rest of his life so there are many things to consider and there are ups and downs to all decisions.