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TOTAL COLECTOMY PART 18

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Posted 3/8/2008 5:17 PM (GMT 0)

My heart flutters a lot and I have mentioned this to my primary doc...should I request a potassium level test? 

I am kind of worried about the anastomosis and the healing...does anyone know how they connect the intestines and how long it takes till it is completely healed?  Also, when the doctor has completed the connection, does he put a scope up there to take a look at the connection? 

Posted 3/8/2008 6:10 PM (GMT 0)
You've probably already had your level checked. It's part of a basic chemistry panel which I'm sure you've already had.

I'm not sure what you mean by how they reconnect the intestine. Do you mean if it's one long piece, L-shaped, etc., or do you mean do they use staples, stitches, etc.?  My colon resection was an end-to-end anastomosis and my colectomy was a end-to-side anastomosis. It was closed with staples and yes, they do check it for leaks before finishing the surgery. Healing time is five weeks...I know because that's how long I had to wait for my balloon dilatation.

Posted 3/8/2008 10:13 PM (GMT 0)
You answered my question.  Ok...so it takes 5 weeks to heal...does that mean I have to precaution with what I eat or how hard I push etc?  I have fears of pushing and the connection coming "apart," KWIM? 

Why did you have a balloon dialation? 

Posted 3/8/2008 11:23 PM (GMT 0)
JB...I really take to heart what you are saying about the emotional impact of surgery.  Although mine is only a few days away, I know that this surgery is going to affect me.  I can't help but to wonder if I am going to be super sensative to every little feeling and worry constantly if there is something wrong.  It is just my personality I think.  What kind of psychologist are you seeing?

Another question, how did they know/determine that your bowels were going to perforate?  I often wonder if I am at risk for this with all the enemas I do.

Posted 3/9/2008 2:36 AM (GMT 0)
Mom2sophia,

I had major complications after my surgery. They are rare so do not get too crazy. My surgeon stated to me that I would be feeling better six to eight weeks after surgery. They will always be overly positive. I think this is a mistake because the recovery period is different for everybody. A TC is major, major surgery and recovery is months not weeks. The body goes thru trauma and the healing process is slow but steady.

I went thru 40 days in the hospital with 5 different admissions, a major infection and a major abcess. This is rare however and you are going to come thru with flying colors. You are young and that is going to work in your favor. I am currently seeing a psychologist for talk therapy. She stated that my long battle caused symptoms of PTSD. I have no history of depression but I am experiencing symptoms. I get some days when I really feel down physically and mentally so my doctor has just started me on lexapro to knock the edge off. I hope it works. I thought I was a real tough guy but those 40 days brought me to my knees. But again, I was the exception and not the rule. Again, you will do great. Just listen to your doctors and after your surgery remember you will recover in YOUR own time. Do not pay too much attention to other peoples' recovery time periods- they do not mean a thing. I learned that from the wonderful people on this forum

My final diagnosis was ideopathic megacolon with colonic inertia. I went years with mild constipation and I was diagnosed with redundant colon after a colonoscopy but the last year or so I developed bloating and gas but I did not need laxatives. My BMs were very poor and I was always uncomfortable. While on vacation I came down with severe pain on my right side. I went to the ER and during an X-ray they found my entire colon severely dilated.The colon was pushing against my other organs and it was filled with compacted waste but there was no blockage. The average colon is 6 cm wide- my colon was 22 cm wide! They wanted to perform surgery right then. I decided to travel home to see my own doctors on Long Island NY. I spent five days in the hospital for tests (Cat scan, colonoscopy, barium enema, more x rays etc.) The doctors could not figure out the reason for the problem. They could not come up with an answer. Finally I saw a motility expert and after reviewing all the tests(including a sitz marker study, small bowel series and an anal anametry they agreed that I needed a TC. My colon was severely dilated up to 24 CM at this point and I failed the sitz marker study with flying colors. The surgeon stated that my colon was stretched like an old tube sock and that he was afraid of perforation. My abdominal area looked like a large loaf of italian bread was implanted. After my 6 hour surgery the surgeon had never seen such a large colon- he removed over 6 feet. They saved my rectum and he connected my small intestines directly-no ileostomy was needed. I am out 5 mos but really 3 mos since my abcess and I am starting to get better. I have about 6-8 BMs a day but over time that will decrease. I am no longer bloated, I am eating well, gaining weght, back to the gym, and except for a few bad memories I am doing just fine.

Recovery for me has been like watching the grass grow. You do not see it grow but you cut it every Saturday!
Good luck to you!
Posted 3/9/2008 4:46 AM (GMT 0)
JB...thank you so much for the story and kind words of reassurance...I trully appreciate it.

I am actually on Paxil now for anxiety/depression which has stemmed from this whole bowel issue.  I am hoping that I can get off the medicine after recovery.  I am a little worried about it slowing down the bowels though...I know constipation is a normal side effect of these types of drugs. 

Irish...this might be a stupid question, but how is there not leaks when it is attached with staples?  Do the cells eventually form scar tissue and that is why there is a narrowing?  I probably should ask my surgeon these questions....

Posted 3/9/2008 9:05 AM (GMT 0)

Mom

I had surgery on a Monday, got out on Saturday, and went back to work three weeks later. I was able to resume a normal diet at discharge. Of course anything that bothers you after the surgery you'll want to avoid. As far as 'pushing' goes, your stools will most likely be frequent and very soft, so the main issue will be holding them in and you probably won't have to push them out. I had the balloon dilatation because my anastomosis never really opened after the surgery. The opening was about the size of a pencil.

Mine was closed with a circular stapling device since I had a low pelvic anastomosis. The stapling devices can close the staples lightly or more firmly and some do a double row.

My most recent colonscopy (one week ago) showed that the anastomosis was okay and didn't need to be dilated. Now I just have to wait until their anorectal manometry machine comes back from the repair shop to see what my next step is.

Posted 3/9/2008 1:14 PM (GMT 0)
Terri...I just want to thank you for all your replies...it is making me feel better. 

So how did they or you know that the anastomosis never really opened after surgery?

Stupid question, but do the staples just dissolve?  Is this where the "5 week recovery" comes in?

Posted 3/9/2008 6:47 PM (GMT 0)

Mom

No thanks needed but thank you. Hmm....I don't want this to scare you...but I still can't go. I wasn't going at discharge but I figured that things were still adjusting. After two weeks, I knew something wasn't right so we checked to see how long things needed to 'heal' before a colonoscopy could be done. When they did that one, the opening was found to be the size of a pencil. After that colonoscopy I went for the rest of the day but then stopped again soon afterwards. Just keep in mind that I was supposed to have a total colectomy but it was changed to a subtotal during surgery. It's starting to look like I'm going to have to go back to have the rest removed, but I still have a few things to do before that's decided.

The staples don't disolve. In fact, during my colonoscopy a week ago you can see them in the pictures.

Posted 3/11/2008 1:32 AM (GMT 0)
I had my TC the first of Sept. 2007, and I had a Sigmoidoscopy performed last month and I could see my staples as well. It is really weird to see, because they are permanantly there I suppose.

JB- Bless your heart. I could not imagine having such a rough time. It makes me feel really wimpy. After my experience in the hospital and being sick for so long, I have had to talk to someone as well. I also have started taking an antidepressant. This is definately a huge change and no matter how much you try and prepare yourself, you have no idea how it is really going to be. My mom laughs and says that when I was in the hospital that was the most traumatized she has been in her life, and I laugh. She is the one who has pushed me into talking to someone, but I told her maybe she needed to come with me to deal with her issues..haha. Anyway, I will be thinking about you while you start back to work, I know that is a very demanding job (my dad is a Lt. here in Alabama), and your mind has to be completely focused on your duties. Stay safe, and start feeling better.

Mom- I may have missed this in previous posts, but when is your surgery scheduled?

Posted 3/11/2008 2:32 PM (GMT 0)
Surgery is scheduled for March 18th.

However, I just had some preliminary blood work drawn and my neutrophils are dangerously low!!!  Now I have to see a hemotologist...they got me in tomorrow...hoping I don't have to postpone my surgery :(

Posted 3/11/2008 2:37 PM (GMT 0)

Mom

Sorry to hear about your neutropenia. Better to get that checked out and under control before having surgery. Let us know what the doc says.

Posted 3/13/2008 4:50 PM (GMT 0)

Hi all...hope everyone is doing well and getting their problems sorted out and feeling well. So I had two appointments this week 1) for drains 2) surgeon to follow-up hospital visit

Some good news first, I got one drain out!!!! one to go, but the fistual is long and complex and has not improved. They said I may be keeping it from healing with flushes, so now I have decreased that and I recheck on the 21st. PLease PRAY this is healing....

I met with my surgeon and he said if it does not heal I may need to be NPO and on TPN/Lipids for an extended period of time to see if it heals or if not, more surgery, but he does think it is too risky for surgery right now.

So....I am very down and cannot stop the negative thoughts. I already have had so many complications....why would it heal? I have lost 16 lbs so far (almost six weeks post-op) and that was with all my clothes, shoes, drain, and still swollen belly. This I am excited about.

Anyways, MOM and SAM I wish you the best with your upcoming surgeries....how did the hematologist go?

I will pray for you as you start this journey, stay positive. Everything will go great!!!!!

 

Love you all,

Lizzie

Posted 3/13/2008 5:30 PM (GMT 0)
Xtreme: I wish you fast healing...that sucks you are having so many complications!!! I think the best thing is to just think positive...like you advised...

As far as the hematologist, I am going in with in the next hour to get a shot.  I will be giving myself this medicine for the next three days to raise my WBC count.  She said I should be good to go for surgery.  I will know more when I see her today. 

Posted 3/13/2008 9:05 PM (GMT 0)
MOM- Just curious is it neupogen? Only becuase I am a hematology/oncology nurse and that is what we give our kids after chemo to raise their white count. Do they know why it was so low? If it is neupogen it works well. I hope all is going well otherwise. How are you feeling about the surgery?

Posted 3/14/2008 12:20 AM (GMT 0)
Yep, that is what it is...got my shot today then go back again tomorrow morning.  Saturday I have my count drawn again.  If it isn't high enough, they are giving me one more dose. 

Well, I had an extremely bad case of mono a few years ago, so bad that I was going to be put on a transplant list for my liver...my enzymes were off the charts.  Anyway, ever since then my neutrophils have been low and my lymphocytes high...

However, this time, the neutrophils are really low.  My doc did a bone marrow biopsy a few years ago for the same reason, and everything was normal. 

Posted 3/14/2008 8:02 AM (GMT 0)
Hi All,I have a question. Has anyone gained alot of weight after surgery.Ihave gained 40 lbs and dont like it . Is it normal/ Would love any comments and help. can you diet? I had tc jan 05 and i was 105 lbs.They told me i would have problems gaining............ lol
Posted 3/14/2008 8:36 AM (GMT 0)
Have you had your thyroid checked?
Posted 3/15/2008 12:45 PM (GMT 0)
Hi Everyone,

I had my signoidoscopy yesterday. Everything looked good. The anastomosis looked open and clear - no need to dialate the area. No signs of any problems. The doctor did give me some supositories for my hemorriods. He said they could be the cause of my pain and the feeling that my rectum wants to come out. Doing the prep and not eating for almost two days, my last meal was at 5 p.m. on Wednesday, I lost another 4.5 lbs. I only drank water and juice which was watered down. The GI doctor was going to do a sedated signoidoscopy but it was only going to take about 5 minutes to complete the procedure so I opted for a non-sedated signoidoscopy. I hate needles so if I can avoid them I will. My surgeon did say that if the procedure came out okay and if my pain continues to make an appointment to see him. I will use the suppositories for a week or so and if my pain is still present I will do exactly that.

Mom - I hope everything is okay with you and your surgery goes as planned. I will keep you in my prayers.

I hope everyone else is doing fine. Enjoy your weekend.
Posted 3/15/2008 2:57 PM (GMT 0)

Resa

Glad to hear that things went well. Our of curiosity, have you ever been checked for H. pylori? It's a simple blood test.

Posted 3/15/2008 3:14 PM (GMT 0)
Irish,

No, I haven't been tested. Why do you think I should be?
Posted 3/16/2008 8:33 AM (GMT 0)

Resa

I'm trying to find out/remember what type of symptoms you were having. H. pylori can cause abdominal pain, bloating, chest pain, and many other symptoms. We have quite a few patients with it. I've had it once and hubby has had it three times. Might be worth checking out next time you go to the doctors.

Posted 3/17/2008 3:07 AM (GMT 0)
Thank you for answering me. Yes i have tyroid checked and nothing shows up. Is it really abnormal gaining weight after having a tc done?
Posted 3/17/2008 1:44 PM (GMT 0)
So, I have now opened another new chapter to my health. I have an appt with my cardiologist on Thursday because they are very concerned that I have paracarditis. This is basically when your heart is surrounded by fluid and your body retains fluid. Which they say is caused from bowel diseases and rheumatic fever, which I have had both. They are talking that I may have to have the fluid drained. Does this sound familiar to anybody else? Let me know. Why is it that right when you feel good, there is one more thing to set you back? I just can't seem to get it right...ARGGHH!

Mom- Isn't your surgery tomorrow? I think I remember that right. I will be praying that you have an outstanding outcome. You will do great, I know. Just keep your head up, and if you have a bad couple of days just think about how great you will be feeling in the long run. May God have his hand upon you and your surgeon during your surgery and recovery. Keep us posted.

Posted 3/18/2008 1:10 AM (GMT 0)
AJ...Yep, surgery is less then 12 hours away!!!! I am so excited (not nervous one bit actually).  I still have a ton of this stupid golytely in my tummy though...my stomach is HUGE!!!  Just another reason to have this surgery.

So what sort of symptoms did you have before you were diagnosed with pericarditis?

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