Is surgery the answer?

My friend's son had a resection at age 16 and it changed his life.

Have you considered putting in a button for additional calories at night?

My 37 year old cousin was diagnosed with CD in jan 2012  after  suffering for a year with on again, off again pain in her side, but no D.  Then in Jan, the pain came and did not go away, and GI said it was CD and put her on steriods and pentassa, but pain still continued in her right side until july, when she finally got an abcess , and she went to a surgeon and had 4 inches of her TI and valve and appendix removed.  Now she feels absolutely 100% perfect, with no more pain , gained weight, and can eat anything she wants, but doesn't.   

Prior to surgery, the GI kept pushing her to go on humira which she resisted, and he kept feeding her with steriods saying surgery isn't necessary and isn't the answer, that humira is all you need to feel better.  Humira will be your saving grace and put you in remission.  He kept bad mouthing the surgeon, saying all they want to do is cut, when drugs will work just fine.  Yea, drugs that turn off your immune system so you get worst problems. Steriods were bad enough, I can't imagine what she would have been like if she was on humira.

Anyway, in july, after suffering since jan with pain, she finally ended up with an internal abcess the size of a lemon, and the the surgeon said , this is the time, you have to have that  diseased part of your TI removed, or things will get worst, drugs will not help this problem, it will only postpone the problem and it might get worst. 

On the other hand, the GI was saying, the surgeon knows nothing, all he wants to do is to cut. What I recommend is that first we will put you ramcaide because it sounds like you have a fistula which caused the abcess, and  remacaide is great at healing fistulas.  Then once the abcesse is healed, you can go on humira. Yo don't need surgery.  Yea..all you need is to turn off your immune system and you will be perfect again.

My cousin decided to go with the surgeon.  During surgery, they found that the appendix had bonded with the TI in one large mass of inflamation. He removed 4 inches of TI and the valve and the appendix,  and also took samples during the surgery that were analized on the spot by a pathologist looking for CD so they make sure to remove everything..   Guess what was found,,,, NO active CD anywhere downstream of the inflammed 4 inches, NO active  CD found anywhere upstream of the inflammed 4 inches, and NO active CD in the rectum or colon.  In the inflammed part they removed, they found only a small section of  CD. The surgeon concluded that all her pain and suffering the last year was from a bad appendix and not CD as the GI had said.  The abcess that the GI said was from a fistula because of her CD, was actually from the appendix and not from the CD. Surgeon looked and could not find any path of a fistula anywhere. 

Final conclusion, all the pain was from the appendix, and CD was just comming along for the ride. This explains why she never had any D prior to surgery, because the CD was not the culprit.

After the surgery, the GI told my cousin now has you have to go on humira so the CD does not come back.  My cousin was pissed, WHAT CD!!!!,,there was hardly any CD to begin with, and now you want me to turn off my immune system, just because they found a tiny bit that was taken out. My cousin told te GI to take a hike and stick humira up his you know what.  Another more conservative GI put her on pentassa 500mg 4 times a day just as a precaution and suggested she continue following the SCD diet which she started during the last year , that it can't hurt.

My cosuin wishes she had the surgery in jan instead of waiting and listening to the GI. Now she feels great, no more pain,  BMs are 100% normal even with the valv gone. In her  case surgery was a plus.    

Surgery is definitely not a decision to be taken lightly, but I would not surrender to "This is as good as it's going to get". If this is all the GI can offer you and your son, I would get a few more opinions. There is no reason your son can't live a normal life and feel 100% healthy. It sounds like many people have had good experiences with surgery. Is the damanged area condensed, meaning that only a small area would need to be removed? Surgery is not ideal for me because my CD is very "patchy" and there are small areas of inflammation throughout my small intestines. But if there is only once restricted area, I think that will be more condusive to surgery. Good luck!

I concur with the others who have testified about how they (or friends, relatives) benefited from a bowel resection. I have had three bowel resections myself, and I don't hesitate to say that all three were life-saving. Yes, THREE - sorry to say to you AWMom, this surgery may not be the last. But no matter how unpleasant the surgery, the short-term inconvenience was more than rewarded by many years of symptom-free living. My first surgery was in 1985 and at the moment I still feel fine, so that's 27 years now that I would not have had without surgery. Yes, I am 100% convinced that I would have died in 1985 without the surgery - I was pretty much in constant pain and couldn't eat, and was fast losing my will to live and probably would have offed myself even if the Crohn's didn't kill me directly.

My disclaimer - I'm not a doctor, and I can't diagnose and prescribe treatment for anyone else. So of course, AWMom, discuss this all with the qualified medical professionals before making a final decision. But you wanted to know if surgery was worthwhile, and all I can tell you is that in my case, it was golden. But there are no guarantees when you go under the knife. As Clint Eastwood said in one of his movies, "If you want a guarantee, buy a toaster."

Best of luck and good health to your son,
Roberto

I was diagnosed at 16, in 2004, and am almost ready to pick the last of the scabs off the incisions from my first surgery, which was on August 13. I spent 8 years trying every treatment I could find, including many experimental, and was unsuccessful. However, each one reacted a little differently. Some helped, but not enough. Some made it worse. Some did nothing. Some had side-effects, though not many.

I managed to hold it off for 8 years, but after all was said and done I was backed into a corner: I either do the surgery or starve to death. Obviously an easy choice. Do I wish I had done it sooner? No. I look at it like this: They're probably going to have to take some out several times over my lifetime. By holding it off as long as possible, exhausting all other options and dealing with a poor lifestyle, I've (hopefully) bought myself extra time to live relatively normally, before I run out of guts to take out.

Since the surgery, I've seen a dramatic decrease in abdominal pain, though the rest of my symptoms are unchanged. Fortunately, I seem to have found a solution to that side of things. Unfortunately, while the pain is reduced, it's still there, and significant enough for me to take notice. I am not, nor am I ever likely to be, in remission, but my life is livable now.

The surgery definitely has pros, but there are significant drawbacks. Also, I know you probably already know this, but this is not a decision you should make FOR your son. You should make it WITH him, or even just provide input and let him decide. He's 17, he's going to need to be making his own medical decisions soon anyway, and this is a big one. My parents and I have never disagreed on anything medical thus far, but if we did and they forced/rushed me into something I didn't feel like I was ready for, I would resent them for it. That being said, I place HUGE HUGE HUGE value on their input. I still bring them along on appointments from time to time, especially for things like the surgical consult before my surgery (and of course the surgery itself). They're also a huge emotional comfort for me. Which reminds me, if you do go ahead with the surgery, plan on it eating up at least a week of your time as well as your son's. It gets lonely in a hospital room, and parents are comforting to have around when you feel like crap.

I had a stricture and major scarring in my TI. I opted for surgery and it saved my life. I suffer from Malobsorbtion now as we'll as loose stools due to bile salts or some other consequence of removing the bowel. I maj rain noral weight and eat what I want, mainly since whatever I eat will be a loose stool, again removal of that valve causes loose stools for a lot of people. It's been six years. No reoccurrence, no pain, or cramps. I still get joint and muscular pain but its quite mild. I'd opt for surgery if medicine isn't cutting it. You get to a certain point where it doesn't work anymore....or never did.

Surgery works for some. I was trying to avoid it for 20 some years and suffered terribly with the last couple of years rolling on the floor because the pain of obstruction was so bad. In 2003 I had surgery and it was the best thing that could have happened. The pain was gone. I could eat again. The only negative is chronic diarrhea. Scar tissue and CD has caused some problems again over the last few months, but hopefully it will resolve completely.