Two questions (one is probably TMI but not for most of us?)

[divot]

Background:
So I've been having a pretty bad flare for the past year or so (have had crohn's for 12 years). Or better described a series of bad mini-flares which happen to have been a lot better when I got a CT scan at Mayo (still showed active inflammation and some strictures) or MRI locally ~4 months later (showed the same thing but again was feeling much better than I was at my lows). I guess the problem is that by the time I get into the imaging the worst of the flare is over so it only shows a relatively small amount of inflammation.

Question(s) 1:
I've switch from Remicade to Humira (something recommended locally not at Mayo) but it hasn't helped if anything I'm a little worse. I guess my question is that the doctors talked about surgery being the next step the but inflammation showing up is relatively small (I would guess it'd be bigger if you looked as I type this) at around 8cm around the TI.

I'm sure I would get an answer when/if I talk to a surgeon but how would they know how much to remove? What happens if I decide to "pull the trigger" on surgery right now when I'm feeling bad but by the time I have surgery the inflammation has gone down?

Second question (the TMI one)
I've been having 10+ watery stools (think like when you are prepping for a scope) a day for the past week or so. Today it has been watery so far but with totally undigested food (corn) from dinner last night. Has this happened to anyone? Is the undigested food a bad/good sign of something I need to see someone about? I'm in the process of moving so it'll probably be a while (early July) till I see a GI unless things continue to get worse.

Sorry for the long post.

 

[Cat-a-Tonic]

Nothing is TMI on the forum. We all go through similar things and we can talk openly on here without worry of being "gross" or anything like that. So please don't worry about that.

Corn is pretty darn indigestible so I wouldn't worry about that too much. From what I've heard, even people with healthy digestive systems tend to see undigested corn in their stool. Personally I avoid corn as I don't think it agrees with me at all, but I'm sure I'd also see undigested corn if I tried eating it. I see other foods undigested at times as well, particularly when I'm flaring, but even at times when I'm not flaring. Fruits and veggies, particularly the seeds and skins, are hard for a lot of us to break down. I've seen tomato skins, grape skins, etc pass through me undigested. And shiitake mushrooms are horrible, they go through me completely undigested, it doesn't even look like I chewed them! So for me it's pretty normal to pass certain foods undigested. The worry comes in if you have narrowing or strictures or active inflammation, which it sounds like you do have - undigested food could get caught at those spots and cause a blockage. So do be a bit careful about what you're eating, as you do not want to risk a blockage (supposedly extremely painful, and can also become life-threatening as it can in turn cause a perforation).

A good surgeon should know which areas to remove, yes. I haven't had surgery myself but I presume you'd consult beforehand with a colorectal surgeon and they would give you your options and decide with you what is best for your case. My understanding is that they tend to do surgery more often when there's scar tissue, as there's no medication that can make that go away, it must be surgically removed. If you have inflammation but no scar tissue, they'll likely want you to try further medications first before cutting out parts of your intestine. You only have so much intestine, and the prevailing thought is that it's best to save it if possible because you may need further surgery down the line and you don't want to end up with something like short bowel syndrome if you can avoid that.

 

[divot]

Nothing is TMI on the forum. We all go through similar things and we can talk openly on here without worry of being "gross" or anything like that. So please don't worry about that.

Thanks so much for your amazing (dare I say perfect) response.

My understanding is that they tend to do surgery more often when there's scar tissue, as there's no medication that can make that go away, it must be surgically removed.

According to the CT scan at Mayo it was "a long-standing stricture and narrowing in the terminal ileum which is consistent with Crohn's disease, and evidence of active inflammation towards the same segment."

Thanks again for your great reply.

 

[JaimeM]

I had ended up at mayo last year, they said that surgery was always a last resort. I didn't qualify for surgery even though I had 3 forming fistulas. I have 12 Inches of affected bowel at the terminal ileum which is all moderately strictured. They put me back on remicade, after I had been off of it for a year, and added Imuran. I'm doing great now. I still have the occasional issue, just recently had my tonsils out as I had gotten an infection in october in my tonsils that still hadn't cleared up. I've been doing great on remicade, even after having to reintroduce it. No reactions (knock on wood!)!

Also, my dr said I would probably benefit from surgery if remicade fails just bc I don't deal with the diarrhea like most crohnsies. I get super constipated and cant go for a week at a time when flared, due to the stricturing that I have. But that I needed to remember I only have so much bowel to remove, so if my crohns comes back in another portion of bowel, then i have that much less to work with, basically don't give up on a drug until i have to.

 

[divot]

I had ended up at mayo last year, they said that surgery was always a last resort. I didn't qualify for surgery even though I had 3 forming fistulas. I have 12 Inches of affected bowel at the terminal ileum which is all moderately strictured. They put me back on remicade, after I had been off of it for a year, and added Imuran. I'm doing great now. I still have the occasional issue, just recently had my tonsils out as I had gotten an infection in october in my tonsils that still hadn't cleared up. I've been doing great on remicade, even after having to reintroduce it. No reactions (knock on wood!)!

That's great to hear. Glad you're doing better. Mayo is great and I agree holding off on surgery is what's best. Sometimes you just feel that you want to do something more drastic have to resist that though.

 

[JaimeM]

i totally agree. I thought I was having a reaction to my remicade a few months ago and was ready to just quit it all and have the surgery. But then we found out it was really a weird immune reaction due to my tonsils being infected and then having my remicade.

 

[KatieRose00]

I had surgery and I totally don't regret it! I feel amazing! I guess it really wasn't an option since my bowel had perforated. I have had diarrhea 10-13 times a day. My food doesn't digest fully all the time either. The doc is confused by me since nothing shows that I'm in an active flare but I have alot of trouble with my bowels so who knows!!!!

 

[divot]

I had surgery and I totally don't regret it! I feel amazing! I guess it really wasn't an option since my bowel had perforated. I have had diarrhea 10-13 times a day. My food doesn't digest fully all the time either. The doc is confused by me since nothing shows that I'm in an active flare but I have alot of trouble with my bowels so who knows!!!!

Interesting so you had surgery in the past? How long ago? And now you are experiencing symptoms again? Sorry if you are, hope you feel better soon!

 

[cmack]

Hi divot,

Welcome, I agree with all of the above posts. I'm undiagnosed and after 14 surgeries, I'm in remission,thank God.

I am not on any crohn's specific treatments, I eat 95% vegetarian and drink a lot of water. I also have trouble digesting raw veggies AND corn (which I avoid). most of my veggies are steamed at minimum if not boiled, also I chew very thoroughly. Anything that I want to eat that doesn't digest well goes in a smoothie, so it is far easier to process.

I think surgery should always be a last resort, for me it was emergency surgery mainly. No choice on that.

Feel free to pm me if you like.


I wish you the best,

cmack

 

[divot]

Wow 14 surgeries you're like a machine that cannot be kept down. Congrats on remission! and thank you so much for the advice on the food. PM incoming.

 

[JackG]

After 6 months of fevers, diarhea and misdiagnosis, I had an abscess that broke and ended up with an emergency ileostomy 35 years ago this last Easter weekend. I heard all the horror stories of what CD could become, but I was lucky and got reconnected 6 months later. No surgeries since, though I came close with two strictures about 5 years ago.

All along I've kept a good relationship with my GI and tried to avoid trigger foods. I've been lucky there, too, being able to eat almost everything except dairy products and some raw fruit for most of 30 years. Lately I've had to stop drinking coffee and even dark pop, and recently I'm noticing some other things that are beginning to unsettle me.

But overall, I've had a fortunate life since I was finally diagnosed, and so will you once you get on an effective course of treatment. CD people have to be hopeful and it makes life happier and lighter.

 

[KatieRose00]

Interesting so you had surgery in the past? How long ago? And now you are experiencing symptoms again? Sorry if you are, hope you feel better soon!
I had surgery the beginning of February. The doc ain't sure what's wrong with me since my bowels never straightened up after surgery. I have to do stool tests every 2-3 months just to keep an eye on things. Also a colonoscopy and endoscopy in 6-9 months.

 

[ronroush7]

Hope all feel better soon.

 

[cmack]

Wow 14 surgeries you're like a machine that cannot be kept down. Congrats on remission! and thank you so much for the advice on the food. PM incoming.

Nothing is gonna hold me down.