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Surgery? When?

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Crohn's Disease
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Posted 7/31/2011 12:32 AM (GMT 0)
Hi. I was diagnosed with a mild to moderate case of Crohn's Disease in 1992. It has been under control with enzymes and Metamucil up until about the last two years. Since that time (2009), I have been having loose stools more than regular ones. It seems like my health level has dropped from about 85% from normal (compared to before ever having Crohn's) to 75%. There is about a 24 cm segment of my small intestine which is infected. I was thinking it would be nice to have that cut out. Of course, this has to be done through a doctor recommendation. I want to avoid the taking medications. At what point do the doctor's decide to do surgery? Thanks for any suggestions.
Posted 7/31/2011 2:43 AM (GMT 0)
Doctors' surgery recommendations vary as much as patients' desires for surgery. There are those who adhere to earlier surgery before large and drastic damage occurs, there are those who don't want to do surgery until it absolutely HAS to be done and there are those content to let the patient decide when they've had enough and want some relief thru surgery.

I would think given how long you've had Crohn's and how mild it has been and how responsive to no real treatment for it that you would be a good candidate for a long remission after surgery. But - that is ONLY a guess.
Posted 7/31/2011 2:02 PM (GMT 0)
Hi. I appreciate the response. It sounds very logical. I feel like surgery may be in my future, I just don't know when. I appreciate your post as it helps me see the gamut of doctor recommendations.

Using enyzmes and Metamucil may have sounded like "no real treatment", but for me it has been the difference between life being rather unpleasant at times and life being enjoyable at times. I thank God, literally, for enzymes and Metamucil. I realize that compared to many people on this Forum, my case is a cake walk. However, for five years before enzymes, the fevers, stomach cramps, painful and frequent diarreah, weakness, and overall ill health were common. I was given sulfasalazine, which didn't help, and offered steroids, which I didn't want. I altered my diet and ate primarily saltine crackers, canned Franco American Spaghetti in tomato sauce and cheese, and Rice Crispies with water. I attended a meeting of people with Crohns and Colitis. Someone in the meeting, God bless their soul, sent me information about enzymes. So I experimented over about two years. I was excited when I saw my first normal bowel movement that I had not seen in years. It was like seeing a treasure in the toilet. I think only readers on this Forum understand. I know enzymes don't help everyone. Perhaps it's psychosomatic. I believe that if it is stupid, but it works, it's not stupid!
Posted 7/31/2011 2:40 PM (GMT 0)
Hi thankful,

I lke you have always had a milder case of Crohns. I once enjoyed a nearly 20 year remission med free. I can be honest now and call it what it really was and that is denial.

My 20 year remission ended abruptly with an emergency resection. Very traumatic experience, if I may say so. Very very painful surgery with about 6-7 inches incision down my middle. After that surgery my now fired GI told me you don't need to take maintenance meds. Well I didn't and ended up with another resection nearly 3 years later. I have now smartened up and now take Asacol to maintain my Crohns.

Why do you have this stricture now, because you have not been treating your disease. What happens is inflammation and healing go on in a microscopic manner without you even knowing it is happening until things close up and nothing can pass and then surgery is required.

To me you don't seem to be a surgery candidate YET, as it doesn't sound like you are obstructing yet. Obstructions is stomach pain centered around the belly button that comes in waves much like labor pains do, you cannot move air or stool out of either direction, your stomach gets really bloated and you will probably not have any bowel sounds. Eventually the pain gets really bad, and you will start throwing up, sometimes throwing up feces.

As Crohnie Too said, its really up to the doctor on whether they will give you surgery or not. Most doctors prefer to save as much bowel as possible. I have only had 2 bowel resections, but because of childbirth (csection), hysterectomy and other abdominal surgeries I am not considered a candidate for more abdominal surgeries unless it is life or death. I am full of adhesions and scar tissue and my bowels are a mess because of them.

I do think that you are going to require surgery one day though, as most who do not treat their disease wind up there one way or the other.

Maybe you should try one of the milder meds such as Pentasa or Asacol. Maybe you could save your bowel with one of these meds. They are the mildest Crohns meds out there and have little to no side effects. If not, I highly suggest you getting your B12 and Vitamin D3 levels checked. Most of us Crohnies tend to be low on those. Also, try to clean up your diet as much as possible. Stay away from all processed foods, they are really bad for us. I personally follow a low residue diet all the time. This seems to work well for "me". You can google the diet and get some ideas of what to eat and what to avoid. Others follow the SCD or Makers Diets. These diets are more restrictive, but we have some members who have saved themselves from surgery following these diets. These two diets must be followed to the letter in order to work properly. But you really need to do something more than fiber and enzymes. If you are adamant about staying off meds, then please do find a healthier diet. Although docs will say diet doesn't matter, it really does. And you may not really be flaring, could be your diet giving you problems.

Whatever choice you make, I wish you the best. I just wanted to share with you what happens when someone like you with milder Crohns has gone thru, and I hope I have been able to help some. Hugs!
Posted 7/31/2011 2:41 PM (GMT 0)
What type of enzymes and how much are you taking? I am always down for trying natural treatments so I would appreciate any information you have on this topic!
Posted 7/31/2011 8:45 PM (GMT 0)
Having had numerous surgeries myself and am very happy having had a ileostomy at 20 yo as my colon was way beyond repair. However, and this is a big however, CD can and does move around the bowel so just because it is in your small bowel now doesn't mean it cannot move elsewhere if you have the diseased area removed. This is especially true if you don't arrange some ongoing medication to get and keep the CD in remission.

This isn't to scare you but to get you to speak to your GI about this so that you can avoid surgery. Surgery on it's own isn't a solution - keep having surgery and you can end up with more problems like malabsorbtion and dehydration.
Posted 8/1/2011 11:49 PM (GMT 0)
My case is milder than most of the people on this forum. I mentioned that previously. I would like to thank those who have replied and shared with me their experiences. It breaks my heart to hear of the trauma that many people have gone through.  I pray that you would continue to press on and share things that can help other people. I appreciate your concern for me and your advice. It seems like a kind of warning and wake up call. 

In my case, I take 7-10 super enzyme tablets, 7-10 bean-zyme tables(cheap version of beano), and 7-10 lactase tablets per day. I try to buy whatever is the cheapest. Am I in denial as to whether these work? I remember when I first got my Sulfasalazine tablets; I was so happy as I thought "Finally, relief from the pain." I quickly became disallusioned; nevertheless, I took them for about 4 years. My GI doctor now tells me that they have been proven not to work. I could have told people that. If they helped some people. praise the Lord. I like seeing people free from pain. Around Thanksgiving time of 1994, I put some liquid beano on some chocolate chip cookies and then in some soup. I was amazed as I found I could digest these foods somewhat normally. My question to the enzyme critics is "Have you tried them?" I mean with discipline like prescription drugs. I have for 16 and 1/2 years. Last year, I had to get cleared to go overseas for work. It was to go to Iraq as an English teacher and teacher-trainer for the military. I had gone twice before in 2007 and 2008. The doctors never knew that I had Crohn's. Last year, they asked point blank if I had ever had any chronic illness. Initially I lied. However, as  Christian I was convicted and told them the truth. They ran a lot of tests to make sure I would not have a blockage. Finally, I was cleared to go, but then a dermatologist found skin cancer--melanoma. Thankfully, the oncologist was able to cut it out and my seminal lympth node was negative.

If any doctors would like to do research with this data, I'm willing to share my medical records. Maybe I'm just deceiving myself. Is my case just a real mild case that would respond to anything? I weigh 182 pounds. I am trying to lose weight! Back in the day when I was suffering, I weighed a lot less.

Finally, I'd like to thank the people on this Forum for sharing their stories. It is both heart-breaking and encouraging!   

Posted 8/2/2011 1:27 AM (GMT 0)
Thankful, I have had Crohns nearly 36 years and all of it has been mild, with a few bumps in the road. I have no active Crohns right now, although because of surgeries I do have lots of scar tissue and adhesions that give me more trouble than the CD. Good luck!
Posted 8/2/2011 3:15 PM (GMT 0)
I would suspect that, in general, most doctors would wait to use surgery as a last resort...either disease that did not respond to medication or strictures so narrow as to risk a bowel obstruction. Since surgery does not cure Crohn's, most docs prefer non-surgerical remedies because of the risks inherent in surgery. Post operative infections, bowel leaks, incisional hernias, unintentional damage to surrounding organs and nerves, adhesions/scar tissue causing future bowel obstructions, just to name a few.

My stepdad had a fairly routine surgery to have his gall bladder removed, and has had intestinal issues with (and a couple of subsequent surgeries for) blockages ever since.
Posted 8/2/2011 6:13 PM (GMT 0)
I agree that surgery is seen as a last resort in most cases because of the problem with complications. I had no choice, well I did but if I wanted a life that I could actually live then it was surgery or become a hermit living in a toilet. So for me it was a life saver and even with several surgeries since and still have occasional flares I never regretted having it but that was 20 years ago and medication has moved on so much.

Although you may not like the idea of medication, talk to your GI and see what they can recommend, it could mean not having to have the surgery at all.
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