Doc wants to do more surgery, advice please.

[cal1]

I have had Crohns for thirty years. I had twenty inches for terminal ilium removed and my bladder repaired from where a fistula had formed do to communication between the ilium and bladder. The surgery was done in 1982.

Fast forward. I am experiencing significant pain in my left abdomen, side and back. The doc says I have a twelve inch strictured area in the terminal ilium. I occasionally experience symptoms of partial blockage, extreme abdominal cramping and burning pain which often leads to vomiting and some relief. My doc decided I should swallow a pill cam. The pill cam promptly got stuck in the strictured area. This has increased the level of pain and frequency of the partial blockage episodes. We tried a round of pred to see if the pill cam would pass. It did not and remains in the same area for about three months. The doc now says surgery to recover the pill cam and remove the stricture is the only option.

I am quite reticent to having another surgery and feel the best approach is to exhaust all other reasonable alternatives first. My surgeon is concerned about my previous surgery and how it complicates the next. She essentially told me the surgery could make me better, worse or just the same. It does not sound like the type of bet I really want to take. I am currently taking Pentasa 500/2 twice a day.
Any insight that can be offered is greatly appreciated.

 

[David]

Hi cal,

Do they know if the stricture is due more to scarring or inflammation? If it's more due to scarring, then all the medicine in the world isn't going to make a difference. As you know, the pill cam is SMALL. If it gets stuck that means your intestines are severely narrowed and, based upon your symptoms and occasional partial blockages, putting you at great risk. Sometimes surgery is the best option and in cases like this, in my opinion it is. I can't imagine how scary it must be as I've never been through a surgery like that and would likely be reaching out exactly like you are.

One potential is a double balloon enteroscopy where they try to stretch open the stricture though I don't know enough about the procedure to even guess if it might work for you. Beyond that, it's surgery. If you do end up going the surgical route, you may want to inquire as to whether or not you're a candidate for [wiki]strictureplasty[/wiki] since you've already had some of your terminal ileum removed.

I'm sorry you're in this predicament

 

[cal1]

Hi David,

thanks so much for the response. I do think the stricture is the result of scarring. Maybe removing the twelve inches or so will help me tremendously. I need to have an open mind that things have improved over the last thirty years. after enduring the first surgery, I told myself, never again. Maybe my perspective is incorrect and modern techniques have improved greatly. I recall feeling like I was such a burden to the medical staff. All I could do was apologize that they were put out by my condition. For instance, the nurses needed to change my IV after about seven days. They stabbed and stabbed, but could not get a new IV started. They said it was because I had bad veins. I apologized and apologized that it was my fault that they had to hurt me. The whole time I was in the hospital, the nurses made me feel like I was such a burden to them. I really tried not to be. I don't want to be a burden to anyone and certainly not a bunch of nurses. That might be the main reason I do not want additional surgery.

 

[David]

It sounds like you rolled craps when it comes to nursing staffs as so many are absolutely amazing. It's terrible that you had to go through that

You are not a burden.

 

[cal1]

Thanks David,

Maybe it is a good thing I found you guys after thirty years. I kind of put myself on an island, all alone after the first rather traumatic surgery. I did not talk about my condition or the troubles I faced. When my family asked me how I was, I said I was fine. I did not want to share my problems with anyone. I only shared them with my wife when I had no choice because she saw me curled up in the fetal position next to the toilet during those partial blockage episodes. I always managed though. I made it to work and did what was expected of me.

 

[501mandy1332]

Hi, Cal. I had 12 inches of my terminal ileum removed in 2007. I was in so much pain, I told my mom I wanted them to just shoot me. I have had three kids, and that was a breeze compared to the pain of a complete blockage. I went about 4 months trying the prednisone. My doctor called me his yo-yo girl, 'cuz one day I would be better and the next I would be in the ER. He finally decided to do the surgery, I was at the point I was willing to do anything to stop the pain. The worst part of the surgery for me was the tube up my nose for 2 weeks. They gave me an epidural so I really didn't have a lot of pain post-op. The recovery took about 4 weeks, and I was back up able to milk our cows again. It was almost 4 1/2 years, before I got another flare. I am in the middle of one right now and I also have a stricture. I too, just had the capsule endoscopy about a week ago, and I haven't seen it pass. I see my GI Wed and I'm gonna make him give me an X-ray. Long story short, if it is stuck and I need surgery to remove it, I will consider it blessing because maybe I can also have the sticture removed and get on with remission again. I have had Crohn's disease for 13 years, and the 4 years after my surgery were the best I had ever felt. That is just my experience, I just wanted to share it with you. You are not alone, and this forum is full of wonderful people and support. I hope I was some help. Mandy

P.S I will be in Wisconsin for Dairy Expo in October. My daughter shows our jerseys through 4-H and she was was chosen to help represent Arkansas at the conference. Just thought that was cool that you are in Wisconsin, my daughter is ready to move there.

 

[Heather_D]

Hi Cal1, I had surgery 3 months ago and I'm so glad I did. I had 2 resections one removing my terminal ileum, appendix, cecum, portion of my small intestine, and top of my colon, and then also another to remove a small portion of my rectum and colon. I have not had any children, but the pain I suffered before the surgery was so much worse than anything I suffered after (and I'm not sure what I'm going to do if labor is actually worse ). For one, pain meds really didn't help the pain I was in before. I was only on pain meds for about 3 1/2 days following the surgery and I haven't needed them since. I would suggest not getting an eppidural though and go with pain meds in your IV like a morphine drip. I have read many stories and one of my co-workers had an eppidural and recovery seems to take longer. I had meds through my IV with a button I could push every 7 minutes (PCA pump). Find a surgeon that can do the surgery laprascopically as that will also reduce the pain and recovery time. I went back to work 3 1/2 weeks after the surgery. I have a desk job, but I went back full time without any issues. I have been doing really well, the surgery actually gave me my life back. I was diagnosed in 2006, but didn't have any bad complications until August 2011, I can't believe how fast it can completely take you down. I am now trying to get used to the scars, but overall I am very pleased with the outcome and glad that I am able to do the things I want...My grandfather has had many similiar surgeries and he's just in awe of how much better they are now than they were even just 10 years ago. If you want any more details my story is in the sticky forum or feel free to message me. Good luck!

 

[cal1]

Thanks everyone for the kind and informative responses. I really think I just have to let go of my negative thoughts about a difficult surgery 30 years ago. I do think things have changed tremendously. For one, I believe modern medicine is more concerned about treating the whole human today, meaning the physical, emotional and psychological being that we are. 30 years ago, they did not seem to care about anything but the physical being.

Mandy, I recall thinking the NG tube I had was less flexible than the air hose I used for my aquariums. It was absolutely horrible. My new surgeon says that she does not put NG tubes in unless the patient shows a real need first. I found this very comforting. I think the Dairy expo is in Madison. Wisconsin is simply beautiful in October with all the trees changing colors and the weather is typically very nice. Your daughter should have a wonderful time.

Heather, it sounds like your grandfather and I could relate to some previous experiences, unfortunately. I am hoping my surgeon can do the procedure lapriscopically as you suggest. The surgeon said she will start that way in hopes she does not have to slit me open like my first surgery. thanks so much for your input. it sounds like you are doing well. It is very nice to hear that.

 

[David]

It sounds like you have a really healthy perspective about this Cal. Good for you

 

[cal1]

Well, I'm back again. I am not sure what posses me to pop in to the board every so often, start posting and then drop off as quickly as I started.

I thought I would give everyone an update since the last discussion.

As it turns out, I did not have surgery. I had a small bowel follow through just before the surgery and the result was no stricture and no pill cam anymore. I was definitely feeling better at that point too. When my surgeon looked at the results, she said there was nothing to remove.

She finally looked at the results the morning before the surgery. I had already started the super fun bowel prep process. Another knock on the medical industry and my faith in them.

When I had the test, I asked the radiologist if he saw the pill cam and strictured area. He said no and that everything looks good except I obviously have the guts of a Crohn's patient because some things are not even where they are supposed to be. Not sure what that meant, but whatever. Of course this news made me vary curious also given that I was feeling better. I wait a couple weeks to hear the results from the Dr. and they never come. I started calling. The office said they would leave messages. I still get no return calls. Finally, I started raising hell, a particular specialty of mine. You know the rest. I do wonder what would have happened if I would not have forced the issue? I suspect I would have been prepped for surgery the next morning. Who knows what they would have done. Maybe removed my appendix.

A couple of negatives from this. First, my lack of faith in doctors continues. My GI dr. said the strictured area is definitely scar tissue and will not heal because of it and therefore must come out. Well, if that were so, why is the strictured area gone? My only guess is that I was having a flair and the stricture was the result at least partially because of inflammation. Secondly, it seems possible I could have awoken from surgery lying on my stomach with my butt in the air only to learn they had just performed a hemorrhoidectomy. I think my GI surgeon shares and office with a proctologist so don't laugh.:ylol2:

So I had nearly six months of very good health. I am now starting to have many of the same symptoms that led to almost having another surgery. I am not sure how I will handle things this time. I am looking into less traditional therapies, but I am on the wrong forum for that discussion. I don't happen to live in a more progressive state when it comes to such things though.

 

[Heather_D]

Sorry to hear about how bad of an experience you have. Although I'm sure you are happy you didn't actually need surgery. I really don't believe all GI docs are like that. I actually had to change GI docs to one that would consider surgery. I knew it had gotten so bad that drugs alone were not going to fix it anymore, but she didn't want to admit defeat I don't think.

Anyway, hope some of the alternative things you try help. I've ready about many people finding a great deal of relief with different diets, probiotics, acupuncture, etc... Good luck!

 

[cal1]

Sorry to hear about how bad of an experience you have. Although I'm sure you are happy you didn't actually need surgery. I really don't believe all GI docs are like that. I actually had to change GI docs to one that would consider surgery. I knew it had gotten so bad that drugs alone were not going to fix it anymore, but she didn't want to admit defeat I don't think.

Anyway, hope some of the alternative things you try help. I've ready about many people finding a great deal of relief with different diets, probiotics, acupuncture, etc... Good luck!

Thanks Heather,

I guess Crohns ends up being such a personal thing and various things work best for each of us individually. Although my first surgery was an absolute must given the fistula in my bladder, I personally believe my most significant problems are the result of the first surgery. As such, I am rather reticent to having more surgery unless it is absolutely necessary. Even my surgeon told me that because I have had prior surgery, the outcome of a second surgery is not without risk. I really appreciated her honestly. She said the result of the surgery might be that I will be better, the same or worse.

 

[David]

Thanks for the update and I'm glad it was good news Cal! I assume you've found the MMJ subforum we have here?

 

[cal1]

Thanks for the update and I'm glad it was good news Cal! I assume you've found the MMJ subforum we have here?

Thanks David, and yes I have.

 

[CrohnsCanuck]

If the stricture is scar tissue, it doesn't 'go away' for anything less than sharpened steel or laser beams. No medicine can relax internal scar tissue. I built up scar tissue over time and eventually I was in very poor health and required the surgery. Long story after that but until the symptoms from the strictures interfere with your ability to work and enjoy your friends and family, I'd wait as long as I could. No regrets there.