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.

 

[Samboi]

It also sounds like the treatment might not have had enough time to work.
Whilst the results of Humira were fairly immediate for me, it probably took at least six months for me to feel the full benefit.

 

[annawato]

I'm sorry to hear about your husbands problems. I can't answer all your questions but can help with some. Firstly waking up and having to empty the pouch is common with ileostomys. Unfortunately you don't always wake up, particularly in the beginning which can result in some very messy leakages - I sleep on a mattress protector over my sheet with a bluey (plastic backed absorbent 'towel' as used in hospital) underneath. I rarely have leaks now but something i found helpful was to set an alarm so that I could wake up and check. Now its become habit but it is VERY hard to get up when necessary. Your husband may find this is not necessary as since he hasn't lost any small bowel he will be able to absorb more fluids than those of us who have lost most of our small bowels. Fluid is absorbed from the large bowel but the small bowel does adapt with time. Amazing how our bodies react isn't it? To the best of my knowledge, short bowel syndrome only applies when most of the small bowel is removed as this is where absorption of most nutrients occurs.
I don't know a lot about removal of the large bowel. Mu understanding is that if the diagnosis is UC and NOT crohns then a J pouch is very successful and thee is no reason not to have the small bowel joined to the rectum, but that is something your doctor can best advise on. I second the others who suggest giving the medications longer to work before taking such a radical step and/or getting a second opinion, but as you say your husband is the patient so the decision is his. You do adapt to having an ileostomy but life is better without one if you can overcome the problems necessitating one. That said there are lots of people on here who find life much better with one than having to deal with problems of urgency, accidents, bleeding or anal fissures and abscesses.
I'm sure others will be able to answer your other questions and give their stories,
All the best,

 

[BowelMeOver]

Thank you all so much for responding to my questions. You three are some of the members that I have gained strength from just by reading your stories, and here you are giving me even more.

We had the follow up with the G.I this afternoon, who we both like and respect very much. His latest colonscopy is showing severe active colitis through the whole large colon, with great concern for the amount of narrowing present in the rectosigmoid colon, which is listed as secondary to his severe inflammation. I have no idea if narrowing means there is scarring, or just really severe inflammation, but it was so bad that he actually had to stop the scope to switch to a pediatric one.

The doctors concern, and push for surgery, is due to the high amounts of Imuran and Humira, and the 4 months of prednisone, are having no affect whatsoever. I actually do believe the only reason he is not bleeding from all of this is due to the fact that he started smoking a couple of cigars a week. The G.I is recommending total colectomy with a j pouch, and we have an appointment tomorrow with the surgeon.

Knowing this additional information, I'd like to add an additional question if I may. Since we are still taking the Imuran, will this be cause for delay in the surgery at all? I know we will most likely not be taking the scheduled Humira shot on Friday, but does Imuran have to be out of your system as well?

Thanks again for being here for us. Continued health and happiness to us all.

 

[annawato]

It sounds like your GI knows what he is talking about and since you both like and respect him I would follow his advice. Narrowing of the bowel means there a danger of blockage and if the bowel is damaged there is a risk of perforation with all the dangers that entails so I can understand the hurry to operate.
To the best of my knowledge the Imuran would not need to be out of the system. Whilst it lowers your immunity I don't think it carries the risks that high doses of prednisone/hydrocortisone do such as poor wound healing. However I do not know this for a fact, just going on memory. I'm sure your GI will be able to advise better.
Keep us posted,
:heart: anna

 

[Misty-Eyed]

I'm sorry you've been going through these problems with your husband. I can't really speak for him and his problems, but from my experience, life is SO much better without my colon! I am also SO glad that I had my entire colon AND rectum out all in one op. I had it all done via keyhole surgery so I only have the smallest scars. I had a lot of crohn's in my rectum but I also know of someone who had all of her colon out and they left her rectum in as that had no disease in it. Now she's got her colon out, she is having major problems with her rectum and it's not something I'd wish on anyone.

If he does just have colitis, then taking everything out will prevent future surgeries for sites of potential disease. Hopefully he can have the op done and get on with his life. I can't have a j-pouch due to my crohn's, but I love my ostomy anyway! I know someone who has a j-pouch and while you do have to go to the toilet more etc, it's better than living with constant pain!

I shouldn't think the imuran would delay the surgery. I had some major surgery recently and didn't even stop my humira shot until 2 weeks before.

I hope things go well for you and your husband! Stay in touch

 

[BowelMeOver]

Thank you for your response, Misty, and for sharing your journey with this forum. You continue to be an inspiration to many.

We had the meet up with the surgeon yesterday, great guy too, very patient and informative. He agrees with the G.I that surgery is the best approach here, and we are scheduled to have the whole colon, rectum and most of the anus removed. His plan is to give my husband a j pouch along with a temporary ileostomy, and to reconnect to the j pouch a few months down the road.

Of course, he also explained a whole heck of a lot of worse case scenarios, and I understand that he is required to give us all the facts, but geeez, one step at a time please! The one thing he mentioned that I'd never read about here was that sometimes, the anus is too far down to make a successful j pouch, and in that case he will perform a permanent ostomy.

Don't tell my husband this, but I am secretly hoping that he loves his ostomy so much that he forgets all about getting a j pouch, as I hear so many more issues are involved once they reconnect him. :shifty:

Does anyone know if there is a considerable amount more of output with a j pouch vs an ostomy?

Thanks again for all your responses. You really make me feel like we can handle whatever comes our way.

 

[Misty-Eyed]

Aww thank you

Glad you liked the surgeon, it always helps! I hope your husband prepares for each eventuality in that case! Not knowing what you'll wake up with having done isn't easy! At least he's been prepared for each case! How is he feeling about it all?

I know a few people who have temporary ostomies with some of their colon left to reconnect and then decide not to. I don't know anyone who's had the first part of the j-pouch op and then not gone through with it though.

There is more output with an ileostomy.. sometimes with a colostomy, it depends where it's placed. The trouble is that the colon is responsible for taking water out of the waste. It's basically a big tumble drier and makes the waste more solid to pass. So when you take away the colon, you're left with a more watery waste product. There are things you can do to thicken it up though. Eating crisps, marshmallows, taking loperamide (immodium) etc. My consistency usually varies during the day. You'll probably find that it will take a while for things to settle down anyway, and by the time they do, he'll be having the last j-pouch op! Also the small intestine will gradually adapt and start to absorb more water than it did before. One other thing is that he will probably have green output until he starts eating again. This is because bile is also re-absorbed by the colon.

I should think it's the same situation with a j-pouch. His body will have adapted to life without a colon before he's reconnected. I think people with j-pouches go to the toilet more often than most and with a loser 'output' but the people I know with one manage fine

 

[BowelMeOver]

Thank you for taking the time to answer my questions again, Misty. You're such a giver!

While my husband is quite adamant about not wanting another opinion, or about not taking any new fangled miracle drug,
I also think he is still in a bit of denial mode, and hasn't really taken much interest in learning about this life changing procedure.

I started researching, almost obsessively, from the moment he was diagnosed in March, and I think I became so overwhelmed with all the information that I felt I was about to burst from it. I got to a point where I was so frustrated with his aloofness, and I told him it was becoming
difficult for me to be strong for him under the weight of all this knowledge, and that I couldn't carry it all by myself. So now, we have an after
dinner discussion every night, and he has actually been asking a lot of questions. I even got him to watch one of those demo videos on the Coloplast website, which he said made him feel a lot less uneasy about the whole process. Whew! :dog:

Thanks again for the all the helpful information you all have shared. It's like a virtual hand holding!

 

[annawato]

Its good he has taken the time to watch the coloplast vid and that you have taken the time to learn as much as you can about his condition. Remember that you can get overwhelmed by all the information on the internet and that you often learn about worst case scenarios and events that may not happen. Its a fine line to tread - wanting and needing to know everything but not getting flooded by 'maybe if' information. It sounds like he wants to take everything one step at a time (or maybe he's being an ostrich and hiding his head in the sand ). Either way at least you will be knowledgeable and know what the doctors are talking about. Good on you. Hes lucky to have you at his side. A lot of us woke up from operations with stomas without any prior expectation of having one. But we do cope. In some ways it is probably easier because you just have to get on and do it. Still it would have been nice to have someone close with the knowldege to help.
:heart: anna