TOTALLY CONFUSED

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stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/7/2008 4:54 AM (GMT -7)   
 So my gastro doc called me approximately five minutes ago. He said he had got my message about me not wanting to have surgery. I tried to tell him that I wanted to try and stay on my meds, but he wasn't really listening to me. Everytime I try and say something  he abrubtly cut me off, and say that I need to get it done. He said that the tissue there is very scared and damaged badly. But I really didn't weel anything wrong until I went and had my colonoscopy done. You know sometime I think that having that thing crammed up you can reaggravate the area and make you have another flare up, in my case I think this is what hapenened. Now I'm really nervous, should I seek a second opinion from another gastro doc before I decide to have surgery. Many of you say that the surgery is not that bad, but the thought of being cut open scares me alot, but I guess I'll have to do what I have too. I tried to tell him that when I take my meds I can feel the spot that he is talking about go done. He said that the meds will only give me temporary relief, but at this point I just don't know. Please help me! cry

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/7/2008 5:40 AM (GMT -7)   
Stephx,

I may be one of the most anti western med people on the forum, but if your GI saw a blockage when doing the scope, it was not inflamation caused by the scope. I know the scope makes symptoms much worse, but blockage is blockage and is dangerious. Get a second opinion, tell the new Doc you want to avoid surgery, and go from there. If your Doc is that abrupt, you may be more at ease having your surgery done by someone who is eaiser to talk to. Some are offended if you question them at all, some will take any time needed to put you at ease with your surgery,if it is not an energency. Also ask the new doc about delaying the surgery, until the meds have you feeling better. If it would be dangerious to do so, he/she will let you know. Until then, you might try this soup/broth to help you feel better and slow the progression of anything going on in there. Also look at the SCD & Maker's Diets. They can help the healing process along, with or without surgery.The Restoring Your Diagestive Health book is by the arthur of The Makers Diet and is where the soup recipie comes from. I prefer the SCD, because the lady who wrote it does not sell supplements shakehead   but both are good eating for Crohn's and other Digestive disorders. Oh, in the soup, I leave out the chicken feet, but they add good nutrients.

http://www.gardenoflifeusa.com/AWayofLife/HEALTHYRECIPES/BrascoBroth/tabid/614/Default.aspx

http://curezone.com/forums/am.asp?i=915234

I have used these methods with great success, but if the time comes, the best thing for me to do is continue my diet modifacations, get a second opinion, find a surgern who I can put my faith in, and fix my belly, so PLEASE see someone for a second opinion soon,


Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11

Post Edited (Margie11) : 10/7/2008 6:43:37 AM (GMT-6)


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/7/2008 7:20 AM (GMT -7)   
steph, when is your surgery due??
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


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/7/2008 9:11 AM (GMT -7)   
My surgery was supposed to be today, but I back out yesterday, due to insucrance issues as well. The insurance has been straightened out now. I called my doc yesterday to try and talk to him abut meds again, but this morning he called back saying that I have to get it done. I just hope that the surgery seems like its two seconds. I can honestly say I'm not afraid of the recovery, I'm just afraid of the anasteshia and the thought running through your head as they roll you down the hall to the operating room that your about to get cut open.

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 10/7/2008 9:52 AM (GMT -7)   
Stephx, when you are in the prep area, where they get you signed in and in a gown, they can give you medication that will calm you down and make you downright loopy. You won't know what is going on. When they wheel you into the OR you won't be aware of it. When they put you under you won't know about it. When you wake up you probably won't remember anything. You just need to let the nurses and anesthisologist know how nervous you are. They don't want you to suffer and they want to make it as easy on you as they can! I've had 3 abdominal surgeries and really the colonoscopies were worse when it came to being aware of what was going on!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 10/7/2008 9:53 AM (GMT -7)   
If you are unsure, you owe it to yourself to get a second opinion. Does your surgeon agree with your GI? I have two very different styled docs (Colorectal Surgeon and GI) and they don't always agree...they are there to help me with my decisions, not make them for me...You don't seem to be convinced you are doing the best for you and that will make the recovery hard, too.

Emergency surgery can be more difficult, so if you current condition is life threatening, don't waste too much time making up your mind.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 10:14 AM (GMT -7)   
Hi Steph Sometimes the meds don't help get things better and that is why he might be telling you that you need it, some meds can make it worse. . Sorry things are so mixed up for you now. The surgery seems like it doesn't even happen and yes they can give meds to relax you. Please try to calm yourself and see if you can get some help with this what are your parents saying. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/7/2008 10:40 AM (GMT -7)   
My parents still think and want me to get the surgery. I'm out of school this semester and they think I need to get it done now before I try and go back in January. If iI decide to get the surgery will I be back on my feet by then feeling normal. How long is the recovery time with a resection. I can honestly say after the surgery is behind me I am looking forward to a few day saty at the hospital it maybe rejuvenal for my body, but I'm just so nervous. I know it needs to be done but my nerves are getting the best of me right now. The surgery will more tahn likely be open. Did anyone have a resection that only took 1 1/2 hours because my doc said it usually takes him this amount of time to complete the surgery. He said that he has done over 300 of these type of surgeries. Should I go for it and is, is worth it. I am thankful for ya'll support and advice.

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 10/7/2008 11:29 AM (GMT -7)   
stephx,

The nephew that I mentioned had resection @ 15yrs old. The period following the surgery was the best in his life. He had no symptoms for 25 years after, and this was done in 1975, I'm sure it is better now than then. Good luck, and if you decide to get a second opinion, do it now and get on with your decision.Second opinions are not a bad idea if you are uneasy with the surgery or your Doctor. The better your health when you do it, the better the recovery, so don't delay. 300 surgeries is a good number, plenty of experence, but not so many that he is surgery happy. Good Luck
Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 12:22 PM (GMT -7)   
That gives you 4 months to get back in shape most surgeries only take about 6 weeks to get a person going I was painting ceilings after a couple of months and I'am in my fifties. You need to talk to your PG, Dr' maybe he can perscribe a short doseage of a mild sedative to calm you. I was most afraid of a ostomy but I didn't need one just a resection. Are you afraid of a ostomy or is it the resection ? How you feeling about the conversation with your Dr; he's probably saying another one got away by now. Most people go into panic zone just the mention of operations. You should of seen me when I had to have abcess surgery thought I'd shake myself off the table. So by the time I got to resection it was more acceptable to me. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


kimmy2
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 10/7/2008 12:34 PM (GMT -7)   
I am the type person who gets nervous, but I also ask lots of questions because I want to be prepared. I had a resection a couple of years ago and understand where you're coming from. I was in so much pain from scar tissue though that I was ready to try anything. My surgeon was great at explaining everything he was going to do in the surgery. The part that I wasn't prepared for was the recovery in the hospital. It seems everybody forgot to tell me about the NG tube, and that I wasn't prepared for. It stayed in 4 days and really was a pain in the you know what. I don't want to scare you, I just want you to know everything so you can prepare. Other than NG tube all was good!(enjoy the pain meds) My life was so much better after the surgery for a year and pain has never been as bad again. GOOD LUCK!
diagnosed CD '03 after suffering for 10 yrs.
 
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade)
 
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, to many pain meds to list
 
Currently on-Cimzia, Cymbalta, and Klonopin(RLS)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/7/2008 1:03 PM (GMT -7)   
I think you should get a second opinion will someone will listen to you and hear that you hadn't been taking your meds and answer your questions about whether it is too late to try them or not.
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.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 1:23 PM (GMT -7)   
Fitzy dear can you tell us what meds will remove scared intestines? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/7/2008 1:56 PM (GMT -7)   
I know that I'm fighting the inevitable with this, it's going to happen sooner or later, I have researched the surgery over and over. I have asked question through this forum and other various websites to get positive info from people so I can know what to expect. I may have a few more questions as to what its really like but I can't stop what is going to happen. I mean I know god is probably saying I have suffered enough and that, he is going to restore me. My birth mother and I were involved in a car accident when I was only 20 months old. My mother passed but I survived, with scraps and bruises and a broken jaw-bone. So I know that this is just another phase in my life that I have to got through. I really believe now that if I was going to die young it would have been with my mom in that car, but god saved me, and I don't believe that 20 years later my life is over. He wouldn't forsake me like that. So now once again I put my life in the hands of the lord and ask him to give me the strength and guidanc eto get through this, because I can honestly say that I'm ready and I know I'll be fine. God and my mom knows how much I am looking forward to life and that death is not an option for me right now. The devil can corrupt my flesh but not my soul. I'm stronger now I have been getting signs that I'll be fine. Just hope and pray that this is my only surgery because God knows I've been through a lot for a 21 year old.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 2:30 PM (GMT -7)   
Hi I had a hard childhood to and your right about a person having had to deal with so much. I am glad you found us and hope your life leads you into a better life. Ask any questions you want to and I admire your strength threw all this we will be here to help you and to just be a friend.So hope your feeling better about things .Just want to know things are alright with you it has been a rough day but better ones ahead. 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 10/7/2008 3:50 PM (GMT -7)   
Gail,

I was referring to the doctor not listening to her when she tried to say that she hadn't been taking her meds but that she was going to start taking them now. I understand that the meds will not remove the scarring. However, I dont think her doctor initially explained to her why she needed surgery. It wasn't until after she cancelled that she learned that she had scarring. So the next question is what degree of scarring? Was there lots of inflamation too that meds might help with? She also had great luck w/ rem and came off for insurance reasons. So maybe going back on the rem would help inflamation even if it couldn't fix the scarring. She wasn't ready, made a mature decision to get more information before going under the knife, and was blown off by the doctor who should be taking the time to explain it to her. That is why I think she needs a second opinion. Knowing now that she is on a leave of absence from school, I would recommend she decided asap if she needs it and if she does do it w/ time to heal before next semester.


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.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/7/2008 5:25 PM (GMT -7)   
Hi Fitzy I just like to beleave that her Dr. knows about her case better then we do .I don't like to interfere in a person's medical decision when I know that a medical professional has made the call .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/7/2008 5:40 PM (GMT -7)   
I mean my dad was there with me when I had my colonoscopy. I was awake but loopy during it, and the doc was telling me to look up at the screen to see the spot he was talkin about, but I remember lookin up at the screen and seeing it, is there a way you can upload images on the forum. If so I don't know if ya'll would like to see it but I have the pics. I mean it looks like it closing but its not quite there yet, but when I take my pentasa it seems to go down. Funny how my gastro doc thought that I was in school and he told my dad that he wanted to schedule the surgery when I was out. That wouldn't have been until this upcoming summer. If he was so concerned that I needed the surgery right away why didn't he go ahead and automatically referred me to the surgeon. My dad was the one that told him I was out now and if I needed the surgery to go ahead and schedule now. I think something is kind of fishy, but I don't know.

stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/7/2008 6:04 PM (GMT -7)   
Oh yeah I'm a male.

stephx
Regular Member


Date Joined Oct 2008
Total Posts : 88
   Posted 10/7/2008 6:07 PM (GMT -7)   
Oh yeah I'm a male.

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 10/8/2008 11:14 AM (GMT -7)   
I think that if you are feeling so confused, then you definitely owe it to yourself to get a 2nd opinion. If your doc was willing to wait till school was over, then that suggests that maybe your situation isn't particularly "urgent" - you should ask him. Another doctor can give you a fresh perspective. If the 2nd GI says you need surgery then you know what you need to do. If the 2nd doc provides you with other options, then you have some more decisions to make. I know that surgery has helped many people. It could really help you too. However, "statistics" show that out of the crohn's patients who have surgery 75% of those patients will have a 2nd surgery at some point in their life and out of those 75% of patients, 80% of them will have a 3rd. So, you are wise to weigh everything. Find out everything that you can and then sit quietly and see which decision feels the most peaceful. God will help you know what to do. I'm sure of it. I hope that whatever you decide you find yourself on a path to health and healing! Good luck to you - you have TOUGH decisions to make at such a young age. You will be much the wiser for it.
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