Colonic (LARGE Intestine) Stricture ?????

[Kevster]

Hello all and this is my first post.

I'm hoping to gain some insight into two things... Colonic Strictures of the Large Bowel and Segmental Resection of the Large Bowel.... HELP!

First, let me give you a thumbnail sketch of my journey......

I was diagnosed with Crohn's in 1990, and had severe chronic symptoms until 1997. In 1997, my symptoms abated within one month of my divorce from my first wife. I have not required any medication or suffered any overt symptoms since. I have a Perianal Fistula that has dogged me since 1995, but life with that is mostly normal..... Food sensitivities are not extreme (mainly store bought red sauce...) and I can eat most things with moderation without any abnormal effects. However, when I went for my Colonoscopy in early October, it was noted that I had a Stricture in the large bowel..... This Stricture was news to me because I didn't have any symptoms until I did the nuclear powered, toxic colonic cleansing/prep regimen. It took me 3+ weeks to recover from that.... I had a hemorrhoid (one that I had totally forgotten about because it never caused me problems) flare up and make things much more challenging!!!

So, about the stricture.... The VA surgeon says it is a concern for it is potentially an indication of a malignancy. Biopsy results and Pathology were both negative, but I'm told that isn't uncommon in the early stages of Colon Cancer. He has not "recommended" surgery yet as he wanted to talk to some "colleagues" first.... He has not stated that he thinks it is cancer, but he says the only way to be sure is to take the piece of the colon out and test it. Has anyone dealt with this condition and how was it resolved for you? I need to know if there are any other potential tests that the doctors have neglected to tell me about that could prevent a possibly unnecessary surgery.... It might be necessary, but the last thing I really want to do is have surgery based on a "guess" because I didn't get another form of test to confirm it.

An observation.... I think the colonoscopy I had in 1997 didn't have this serious colonic cleansing routine... I though I just used a couple Fleets and went on down to the GI clinic. That cleansing messed me up and enflamed (inflamed?) severely. Does anyone think that the cleansing might have exacerbated the stricture prior to the procedure? I know it made a non-issue hemorrhoid into a monster "stopper" in a matter of a couple hours...

Now about the surgery.... Should I end up proceeding with a surgery (Segmental Resection of the Large Bowel), has anybody got any advice? I've never had any abdominal surgery of any sort. I was told that due to this my recovery and the methods used would minimize my hospital stay and recovery time. No externalizing, etc.... I've heard in the past (from non-surgeons) that most people never really feel "right" after this type of surgery. The portion of the bowel that seemed to be affected appeared to be rather limited. Has anyone been through this type of surgery that can give me some advice? I read a few comments in a small bowel resection thread... Any further insight would be greatly appreciated.

I want to be informed for my appointment on 11/23..... I would certainly appreciate it if anybody that has had experience with these issues let me know what to concern myself with here....

Many thanks to all.

Kevin

P.S I have some good info for homeopathic/nutritional treatments. I will create a separate thread tomorrow. Basically, my saliva glands production/underproduction of particular enzymes precisely matched my food sensitivities in 1997.....

 

[Kev]

Hey Kevster.. Welcome to the forum. Since you are facing a deadine, I won't beat around the bush. First off, I had a cancer scare, but in the pancreas, not the colon. If it were me, and a doc suggested surgery to remove some part of me I could live without because it was possibly cancerous, I'd offer to sharpen his scalpel. but that's just me. Undergoing surgery is not something to be taken lightly, although I've had a number of them. Including a resection of the large colon (or bowel, so theres absolutely no mis-understanding).. They removed 1 1/2 feet, in an anterior resection I believe it was called, and it wasn't performed laproscopically. My surgery before that was a laproscopic removal of the gall bladder.. Of just these two, the bowel resection was by far the easiest. It literally was a walk in the park. I was operated on in the morning, took my first walk with the assistance of two nurses that afternoon, and my first solo later that nite. Each N every day I doubled both the number and length of the walks I did the day before, and I was off morphine drip in two days, off the IV within 4, and home within 7. I sparingly took some codiene for the pain, but was totally off of all pain meds within another week. Within 5 weeks I was doing yard work, within 6 I was medically cleared to return to work. I literally never felt better... I hope that helps in your decision. If, by some chance, the docs can't determine whether it is the big 'C' or not, and they suggest surgery, then hopefully my story will simplify the choices left to you.

Anyway, once again, welcome. Please keep us posted on how you make out, and if you have any questions, or just need to vent, we're here for you...

PS I had just the opposite effect from the colonscopy bowel prep. It gave me a vacation from all of my symptoms... We all are just a little different

 

[Cog]

I would also go for the surgery - I would ask them to do it laproscopically - quicker recovery. I had a restriction all the cancer tests were negative and when they removed my colon much to every ones surprise there was cancer. Catch it early - other than doing biopsies I am not sure there are any better tests. See what they recommend - good luck.

 

[Kevster]

Thanks for the responses....

Cog
My biopsy was negative, but the surgeon mentioned that that was not uncommon in the early stages of colon cancer... When they found cancer as a result of your surgery, did they have do any follow up treatment (i.e. chemo, etc.)? Thank God you had it done when you did.

Kev
Thanks for describing your recovery. I know laproscopic surgery is supposed to be a much quicker recovery. I work mostly from home, so I might be able to get some things done prior to a typical work release. Things have been slow anyway....

Did you notice any adverse changes or complications following your surgery? The longer term stuff more so than the short term. I would likely have far less removed than you did, but ANY is more than we would prefer....

Thanks again to all!

 

[Kev]

Welll, I dunno why my lapro g/b surgery hurt more than the old fashion bowel resection... it may be that the location (higher, nearer the diaphram sp?) was the issue, or the inflating of the area... In any event, the resection was not a nitemare, it was a walk in the park.. Now, less removed is way, way better, because too much removed can cause you to experience short bowel syndrome... literally constant trips to bathroom, and there is no recourse that I know of. As for my outcome, its atypical. I was operated on as an emergent situation... not a life threatening emergency, per se... but more a 'it soooo bad, we need to take this step as soon as possible'.. However, at the time, I'd been diagnosed with severe 'diverticular associated colitis', and removal in those cases is pretty much a cure... Problem is, that isn't what I had, and after a brief reprive, it all came back, faster N worse than ever. But that's just my case, OK? So, if they suspect cancer, and they remove some of your colon to take it out, and the stricture at the same time, you should do just fine. That is my take on your situation. Bear in mind, I'm no doctor, just an amatuer guess.

 

[Kevster]

Going back to get the stricture "tatooed" on 12/6.... My prep is two Fleets... I'll know more from that. If it is the same or similar as it was on 10/3, then the surgery will be scheduled.

The surgeon said that the stricture was constricting to the point smaller than the diameter of a ball point pen.... I wonder how come I haven't felt any overt symptoms? I don't want to find out the hard way!!!!

The surgeon stated that it might end up being as much as 16" of colon should only the one area be an issue. He has to ensure good blood flow to the colon's remaining area.

The estimated chance of cancer given all the stats, my age, etc...... <10%.

I'm not going to sweat the small stuff at this point....

Everything where this is concerned needs to be small stuff until I know for sure, and then I need to not worry about it anyway,

 

[Cog]

On the follow up I did 6 months of chemo to give me an extra 1.8% extra chance of survival I personally felt that if it was going undetected I preferred to hit it with everything rather than just take the attitude it is gone now so what is the problem. A neighbors father was also diagnosed with colon cancer and had the cancer removed and did no chemo follow up. You just never know. Good luck with the surgery. If you start getting a a lot of severe pain and cramping in the gut. Make a trip to the Emergency room. My stricture closed up and I would say the pain was pretty good ;( Thankfully we have good friends to look after the little one in the early hours of the morning.

 

[Kevster]

Another update.....

I got tatooed. I also got a Cat-Scan. Bad news from the Cat-Scan. It appears that it's not just one isolated area. My first stricture is at 40cm, which is above my sigmoid colon but below the transverse colon.... However, it appears that I have a series of strictures across the transverse colon. So instead of a 30-45cm section being involved, it may be every bit of 75cm/half+/-. I am to get one more test with a barium enema......, and this has changed the situation a bit.....

This is life altering stuff. Voluntarily having half (or possibly more) of your colon removed at 39 is a rather crappy (pardon the pun) choice to make. Unfortunately, I did not have regular colonoscopies for 10 years because I felt (and still do feel) fine. This might be something that is progressing quickly, or it might be something moving more slowly. I need to know what they see with all these tests before I make a decision, but I'm leaning toward waiting 3-6 months and see if it is progressing. I know it might just be forestalling the inevitable, but 3-5 more years with symptom free living is better than nothing. If it is progressing and is looking more serious, than surgery is the logical choice.

One variable I can control is trying to find out what my life might be like from people who have had 50%+ of their colon removed. I would ask for anyone who has had to go through this to please share their experiences with me. I can work from home, and only have to leave for 2-3 hours at a time....; so I can still earn a living with 25%-50% of a large colon. Quality of life? I have no pain or discomfort now, but how after a surgery like this? I haven't had formed stool in 12 years, but I never get blood and have infrequent watery stools; and I typically only have 4-6 bowel movements a day at most. How did the frequency increase/change after?

I knoe that if someone had a diseased portion of their colon removed, they would show an improvement as this would eliminate/minimize their symptoms....., but I don't have any symptoms. So if you could please share.

Does anyone have any other places they might recommend I post regarding this? I though maybe a colon cancer survivors board might be a good idea. Since I am mostly symptom free, that might give me a perspective of the recovery without the IBD symptoms being a factor.

Thank you so very much to anyone who may be able to help. I truly mean that too! I appreciate anyone with the courage to speak up about personal pain such as this.

 

[Kev]

Welll, as for who else to turn to, I think I recall seeing a post on here at some time or other where a person had dealt with colon cancer and crohns, but who that is/was escapes me. It might even be a figment of my bad memory or drug induced states. Anyway, there was a member who suffered from short bowel syndrome after having to have too much removed. I had heard of it from another GI surgeon whom I'd asked for a 2nd opinion. There were (and perhaps still are) a number of members who had the entire colon removed. I think researching this is your smartest move, but I also would sit down and get some tough answers from your docs... like, it looks pre-cancerous now... what are the odds it will turn malignant? If you remove 75 cm, how likely is short bowel syndrome? If it looks like the amt that has to be removed will cause the above, what are the reasons not to remove it all? wouldn't doing that remove any risk of colon cancer? what are the odds of developing cancer in remaining colon? If the op is postponed, and it turns malignant, then what are the treatment options? is the surgery worse if cancerous Vs colostomy (whole/partial)? I'm sure you've probably thought of and asked all these questions already.
Have you asked them of a 2nd doctor? Did you get multiple opinions? this is a difficult choice... One of my prospects has been the possibility that I'd have to face a full removal of the colon. I've been fighting to avoid that potential outcome tooth and nail. Odd thing is, if it were possibly cancer, I wouldn't have fought so hard. I haven't liked cancer since I was just a kid. Don't get me wrong. I'm not suggesting you plunge yourself under a scalpel.
I've heard of some famous people having been diagnosed with colon tumors who beat it.. My understanding is survival rates hinge greatly on how deep the tumor has penetrated the wall of the colon. Think our rotting colons are to blame on the survival rate as it's affected by diseases like colitis. I have heard the biggest issue is IBD scars make early detection more problematic, but in your case, they seem to be ahead of the game. The doctors may be making a decision, urging surgery now, based on the stats of those who've had IBD, and that IBD delayed detecting tumors/cancer. You know what I'm trying to say? Maybe clarify with the docs that if you opted to wait, how it would change your chances for a favourable outcome? Check everything

 

[Kevster]

Slightly better news during the office visit. The results of the first colonoscopy, which was done by my GI, stated a stricture at 40cm. The second colonoscopy, performed by the colo-rectal surgeon, found it at 55cm. The Cat-Scan, which I got to see the slides from, indicates one area of stricture from 55cm to about 70cm (my estimate). It is basically at the top of the descending colon up into the transverse colon. The surgeon may have to remove more colon than I first thought, but still between 25-50%. Not great news, but it leaves me with a good sigmoid colon. This should be preventative of short bowel syndrome....

I will be talking to a friend/co-worker of my wife who is about two years older than me and survived colon cancer a few years ago. She had significant portions of her colon removed and she didn't notice any change whatsoever. The surgery might benefit me as my bowel function could improve.... I'm not all negative.

I've had two medical opinions, a GI and a CR surgeon, and they both said that surgery is the best option. The stricture is too narrow to pass a typical ball point pen. That could lead to a colonic blockage that Cog referred to. I'm not too interested in personally experiencing that either....

A barium enema and X-rays in early January, followed by a decision. If the surgery was done and it was found to be malignant, the recommendation would be to remove the whole colon.... Not my first choice. The chances of cancer are 7-8% (mighty precise, I thought), and if it is then it is slow growing. I would deal with that one when faced with it..... Neither the surgeon nor I are to concerned about that.

I thank you for your perspective, and I value the input. I don't like the idea of surgery, but I'm not going to avoid it if that seems the best thing to do. My first order of business is to enjoy my Christmas. It is great to find something positive, isn't it?

Thanks again.

 

[Kev]

Yes, it is great. Happy holidays. considering how bad the news from this past visit could have been, the news you got has a lot of positive aspects to it. as for the reluctance to entertain the thought of a total colon removal, I understand and empathize completely. I felt the same reluctance, even tho I have to admit that those I've talked to on here who have gone that route have been extremely pleased with their outcome. It is not some form of vanity, nor fear of the operation. There's just a finality to it, something about turning that point, having to rely on a colostomy pouch. I just can't bring myself to take that step yet, and will continue to accept the pain as paying my dues trying to avoid that step, knowing all the while that in the end, I probably will end up having that procedure. go figure. You won't find me trying to talk you into it. i welcome the company of another on here who isn't prepared to take that step just yet either, no matter how good the arguments are in favour of it, or how inevitable it may be. Like yourself, i'll only cross that bridge when I absolutely have to