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Surgery or no? Doc' Letter

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Crohn's Disease
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Posted 4/25/2012 2:39 AM (GMT 0)
I had a colonoscopy done last week due to some rectal bleeding..that I now know is some hemmorids I have...ewww...But my GI performed my colonoscopy and this is the letter he sent me.

The examination of your colon on 4-18-2012 was normal. The lining of the colon is normal showing no signs of Crohn's disease.

 Your history that a CT scan of the abdomen on 1-5-2012 had shown Crohn's Disease of your small intestine. Your stool cultures and laborartory studies were also all normal on 4-15-2012.

I would suggest the following

1. I would like you to have a regular diet

2. You should continue the use of Pentasa

3. I would like you to call me in one week to let me know how you are feeling, If you continue to have abdominal pain, I think the next step would be a laproscopic examination at which point the Surgeon could resect this small section of your Terminal Ileum. Another option would be the use of Remicade, however, in a young female with such a short section of Crohn's Disease limited to the Terminal Ileum, I think surgery is the best option, especially in view of a normal colonoscopy.

Ok that is the letter I recieved. My question is if surgery would really be a best option in this situation. I do not experience much abdominal pain except the occasional cramping before a bm. I usually have one bm a day and not D but just soft.

I am fairly new to the disease so any feedback would be appreciated

Posted 4/25/2012 3:42 AM (GMT 0)
I would get a second opinion. A doctor recommending surgery should have called you into his office, explained in detail why that's the best option in HIS opinion and not sent you a letter. That would one big strike and and red flag for me. If you are near any major city medical centers that may be a good option. Some doctors prefer to cut and it's not always the best option. Surgery is ususally reserved for the more severe cases but of course I'm not a doctor just what I have read and heard from other patients and doctors. It's best to go to another hosptial too. My experience has been doctors in the same hospital back each other up.

Good luck. It's your body so you do what you think is right. If something doesn't feel right or sound right to you, go some place else. You have to live with the decision not the doctor. I made many mistakes going with one opinion at a small regional hospital and had many surgeries which didn't do a thing for me. I found a wonderful GI who is associated with CCFA. You could try calling them for the name of a doctor for a consult. They are very helpful.

How long ago were you diagnosed? There maybe other treatment opinions that aren't surgical.

Take care and be well,

Julie
Posted 4/25/2012 3:46 AM (GMT 0)
HI Malshay, surgery should be your last resort unless your doctor thinks it is an emergency. Obviously you are unsure of what your doctor is saying, and why did he/she not discuss these things with you face to face.

It is your option to always get another doctor's opinion.

Always ask questions, hope you get the answers you were looking for.

 

Posted 4/25/2012 3:46 AM (GMT 0)
I was diagnosed in Jnauary. I realoly do not have bad symptoms. Like I said in my post I do have soft stools but usually only once a day. My abdomen is rarely in pain.
I am currently on Pentasa after I tapered off of my Prednisone at the beginning of this month.
Posted 4/25/2012 4:03 AM (GMT 0)
Sounds like great scope results. Surgery should be a last resort when meds fail. Besides, if your TI is clear (and that's the only area you have had CD), then the pred & pentasa might have done their job, so why should you have surgery?

I think you should get a second opinion.

Good luck!
Posted 4/25/2012 11:39 AM (GMT 0)
Check out the book  "Breaking the Vicious Cycle" about managing your crohns by changing your diet.  Since you are newlly diagnosed, and with what sounds like a mild form of CD, maybe changing your diet would help you control your symptoms and put you in remission.  This specific carbohydrate diet (SCD) seems to work best in people who are newlly diagnosed and who don't have severe crohns.  This diet does not always work for everyone, but you have nothing to loose by trying it, and you have all to gain if it does work for you. There are many people on this site who have had great success with this diet in managing thier crohns, so you have a wealth of information to ask questions from.
Posted 4/25/2012 11:37 PM (GMT 0)
I have Crohn's only in my ileum, and currently I'm just on Pentasa for maintenance. Typically surgery is a last resort option, because with Crohn's we can just get the disease in another location, so surgery is not a cure. Also, surgery can cause scar tissue, which can put you at risk for obstructions. I think you should get a second opinion.
Posted 4/26/2012 1:37 AM (GMT 0)
Try the diet suggested in one of the previous posts, stay on your meds and find a new doctor. You will be ok and it's seems right now your disease progression is staying somewhat under control so you have time. Try not to worry to much about that letter. Finding an excellent G.I. is key and worth their weight in Gold. You will find someone that will be right for you.

Take care and be well,

Julie
Posted 4/26/2012 2:30 AM (GMT 0)
Yup. I would definitely want a second opinion. What they take out they can't put back in.

You really haven't had time to give medications a good try. This GI sounds more like a colorectal or general surgeon than a gastro!!! There are ways other than a laparoscopic exploration to monitor your terminal ileum and small intestine. His recommendations sound rather drastic for the situation you are describing to us.
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