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stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/6/2008 6:40 AM (GMT -7)   
Today at 12 noon I'm supposed to start prep for my first surgeryfor crohn's tomorrow. My doc is supposed to be performing an ileocolectomy, which is the removal of a small portion of my large intestine and piece of my small. The doc said it's going to be open surgery, and it takes him 1 1/2 hours to do. Has anyone had this surgery done and can please give me any fina words on to what I should expect, I'm very nervous. My crohn's has been controlled pretty good by the meds I'm currently on, but I had a colonoscopy done again on Sept. 10 and my doc found that the disease has not spread into any other region of my colon, but the spot that was infected has now gotten really thick and a stricture is forming. I really didn't have a flare until after my colonoscopy, but I failed to inform my doc that I was't taking my meds like I should. Right after my colonoscopy I could then feel the spot the doc was talking about, and it got real uncomfortable and it didn't hurt it just felt like a lot of pressure in that spot and made me uncomfortable. When I did started taking my pills right after the pressure resided so I'm thinking that the swelling went down. If this is the case I think my crohn's can still be controlled by the meds. My doc said that I'm in a progressive state of anemia and my hemoglobin blood level is like around 8.9 to 9.2 I mean this is low but haven't been taking my b-12 injections for like 10 months because my family doctor has retired and I was in the process of trying to find another doc. So I'm really thinking about trying the meds a little longer, I still can eat without much pain, but I know not to over due it. I pretty much eat what I want, and I know what food s to avoid. Since my doc has suggest that I get surgery to remove the disease portion my parents, seem to want let me back out of the decision as to whether or not I really want the surgery. shakehead They think I should get it, but its not there body its mine, they seem to believe that the surgery is not that bad and that I'll be fine but I'm very hesitant about it. confused I'm very confused on what I should really do. Oh yeah I forgot to mention that before my colonoscopy I was passing fairly well fromed stools, nut since afterwards it's been mainly D/loose. I'm thinking that if I started my meds regimine back than it will clear it up, my b-12 injection help alot too, please help I'm real confused as to what I should do? My parents are on my back about this? nono

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/6/2008 6:49 AM (GMT -7)   
It is your body. I would only have surgery if I knew it was my only option available. I think you need to fess up to your doc that you haven't been compliant with your meds and see what (s)he thinks about trying them again. If you are not comfortable with it, don't do it. Are you under 18? If so you will probably need your parents on board to change your mind this late in the game.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/6/2008 7:04 AM (GMT -7)   
No , I'm 21 but they really think I need the surgery. I mean they are just saying this because I complain about stomach pains ever so often and have to get in a ceratin position to ease the pain. They seem to not understand that I have this disease for the rest of my life and it's something I have to live with. They think this surgery will eleviate all pain and that I will probably be cured, but I know that this is not true, sure it will eleviate pain for months, years, etc., but more than likely it will return and sometimes worse to my records. I mean if I still have the energey to take care of myself than, why can't see my side of the story and let me try my meds once more. Surgery is such a s drastic step to me.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/6/2008 7:18 AM (GMT -7)   
Then you have to make the best decision for YOU and tell your parents that you are not looking for permission just for them to respect and accept your decision.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/6/2008 7:25 AM (GMT -7)   
Thanks FitzyK23 , I think that I'm going to contact my gastro doc and talk with him immediately. My parents have to understand that it's my decision and not theirs. I wis h this desease upon no one, but sometimes I wish the shoe was on the other foot. They don't know what its like to live with this, only I do. I bet if the had to do it they would rethink it as well.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/6/2008 7:42 AM (GMT -7)   
I think talking to your doc asap is a great idea and being HONEST about the meds you have not been taking.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Miss_82
Regular Member


Date Joined Jul 2006
Total Posts : 73
   Posted 10/6/2008 8:31 AM (GMT -7)   
Talk to your Dr. and get back on the medication and see how that goes. But if after a few weeks, months you're feeling worse than go for it. But surgery should alway be a last option. It is not going to cure you as you said and it MIGHT come back in a few months, years. Who really knows.

One year after my surgery the bowel is showing signs of Crohn's already. So do it only if you really can't seem to have "normal" life.

Keep us posted! :D
26 years old
CD for 20 years
Bowel resection in Dec. 2006
No meds at the moment


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/6/2008 10:36 AM (GMT -7)   
I'm a little confused Steph. You say your disease is not too bad, but your gastro has obviously seen something that's bothering him.
I know that they don't do surgeries "just because they can".... Seems to me it might be more necessary than you think!
I've had 2 surgeries, and while they are not a walk in the park, they're not so bad either. As I told you before, in your last post, pain
is probably the biggest issue, but they really won't let you suffer. Please believe that! Also following this surgery (if you get it done)
please remember to walk as soon as possible, it sounds like a tough thing to do, but it really will help with your recovery...
If you're going to speak to your doc, make sure he tells you exactly WHY you need this done. Try and put your anxiety to one side
and really listen to what he has to say!
All I can offer is my best wishes in which ever decision you make... We're always here for you. Good luck sweetie!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 10/6/2008 10:56 AM (GMT -7)   
u should probably get more opinions from other specialists...Hope it works out without surgery:)
SCD since 01, remission since 01, occasional Arby's breaks :)


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 10/6/2008 11:07 AM (GMT -7)   
ONce you've had surgery you can't unring the bell. Here's the thing. If you go forward with this surgery without having a straight talk with your physician about your non-compliance in taking meds, you will always question your lack of action. This is a pivotal point in the history of your disease. Your surgery is almost certainly justifiable -- as has been said, physicians don't do surgery for the fun of it. However, physicians do base their decisions on A) what they see (signs) B) on what they are told (symptoms) and B) response (whether prescribed medications reduce signs and symptoms.

If you have not been honest with your physicians, they are making decisions that are flawed. They are flawed the information on which they are basing it is not reliable.

It will take a tremendous amount of courage to acknowledge that you have been non-compliant, but you really owe it to yourself to get this straightened out before you have your surgery.

You are only 21 and you don't want to run out of bowel before you run out of life. Maybe the surgery is necessary because the stricture is due to scarring. But maybe, with appropriate medication, your sugery could be delayed another five years or more ...
Belleenstein:

30+ years living with Crohn's.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/6/2008 2:55 PM (GMT -7)   
Bell made a good point there with the proper info needed for your Dr. to make decisions. Hope things are going good for you today.Keep in touch lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/6/2008 7:51 PM (GMT -7)   
Please let us know what you decided.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/6/2008 9:02 PM (GMT -7)   
Earlier today I canceled my surgery that was scheduled at 11:00 am tomorrow morning. I told my surgeon that it wasn't indefinite but that I was going to try my meds once again. I have yet to get in contact with my gastro doc, due to he was doing other procedures today. The nurse said she was going to tell him to call right after his 10:00 am procedure and I waited to about 1:00 before I called back. When the nurse answered I ask if my doc was available, she had the nerves to say that he ahd already left for the day and was at the hospital doing more procedures, my doc does procedures at his office and at the hospital for some reason. Anyway I'm supposed to be trying to get in contact with him tomorrow, to let him know about my med situation. When I was first diagnosed in feb 2005, he started me with remicade infusions which were working with me incredibly, I only had three but it cut my pains out almost completely with the assistants of my other meds pentasa and b-12 injections monthly. After graduating from high school my insurance got canceled that fall and I was not aware so when I went to have my last of three series of remicade infusions I was not covered, what a bummer. So I ended up being charged 4,000 dollars, what an expensive med. I haven't ben introduced to anymore med since then except for 6MP which seemed to hold my symptoms in check pretty good to when I take them, I'm nervous of these pills because I still won't kids and my doc said that it my corrupt the quality of you know what, so I take them like every other day or maybe three times a week. But now I see I have to take them everday if I wanna avoid surgery. I here about other meds like predisone and humira, and cimzia. I never tried any of these, butyet my docs wants surgery. I mean I'm pretty sure my meds still work only if I take them, and believe me I'm taking them now. I'm going to give them atleast three more months and if my blood work and pain comesback in a positive favor than, I'll continue them. If not I guess the decision of surgery has to seriously be taken. But for now just keep me inyour prayers as I'll keep you in mine, and hopefully one day we want suffer from this disease anymore, and someone will come up with a cure cause believe there is one.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/6/2008 9:11 PM (GMT -7)   
It sounds like you made an intelligent choice. Honestly, there have been lots of people on here that have had children on much stronger drugs. Your meds won't work unless you take them regularly. Do you have insurance now? Maybe you should try some of the big guns like remicaide again. I hope your parents are being supportive. Next time you call your GI make sure you tell the receptionist why you are calling. I think cancelling surgery ($$$$) should get their attention. How was your surgeon? I am guessing they aren't very happy when people cancel last minute. I hope they aren't going to charge you for anything. I am glad you are trying your meds again. I will pray for you and wish you luck.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

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