TOTAL COLECTOMY PART 19

Hey there ladies and gents.....

I have been reading for a while, but have not posted. Its been a while since my last post. I feel for all of you who have this upcoming surgery, but I must say I highly reccommend the surgery. I had a laprascopic total colectomy with ileorectal anastamosis. I had the surgery Jan 28 of this year and returned to work nearly four months later. I had many complications after surgery including a post-op ileus, four abscesses, a fistula, and two drains for 45 days. I have been doing relatively well since the drains were removed. I still take MofM once a day and this does the job for me. I have 4-5 BM, but loose. I have a very hard time digesting veggies and salad, but its hard to stay away from them. I had a scope in the end of June becuase I had a drop off in BM (before I started the M of M) and my lovely surgeon (God bless him) thought I may have a stricture or narrowing of my commection (this is where all my problems were after surgery) but everything was fine. He recommended biofeedback therapy which I started a month ago. This was very intersting and they have determined now I have muscle dysynergy and my rectum will not relax. It was good to get the colon removed and now I am dealing with this new problem. I go to therapy once a week and it is NOT fun, but I will try and do anything to see if I can stop the laxative. I saw my surgeon for my 8 mo check up and he said I need to continue the therapy for 6 months and if it still is not working then I may have a condition where my rectum "has no ability to relax". If this is the case then they would do botox injections in my rectum to paralyze it temporarily.

I am a nurse and on my feet all day. With all these post-op complications I have had and continue struggles I would not change what I did for any amount of money in the world. I was SCARED to death......but everything will be ok even with bumps in the road. I was in for a total of almost 20 days (two admissions) and even with all of my problems I would do it all over again. I am 5'2 and was nearly 140 prior to surgery. I had gained it all in the last three months. I was previously 120. I had no idea how or where weight was coming from but it seems to be a common denominator in us with CI. After the surgery I lost all the weight I had gained and 8 months later I am 119 and have a whole new body. I started a 90 day workout a month ago and although I have put on a few its all muscle. I have gained lean muscle and burn more fat. I eat more now than I ever have and I weigh less. I have been able to do abs and I have energy I have not had in years (even despite the complications). I wore a bathing suit all summer with pride (I have not dome this in 10 years) and my father in lawsaid I look like I have a new body. I have scars, but I embrace them. They are nothing compared to living with incontinence. The longest I went with mass amount of laxatives on board was 22 days. I looked almost 8 months pregnant. Now with one small dose of M of M I am able to go and eat and workout and be happy. I have regained confidence I never thought I would get back.

I hope this helps you that are fearful of this surgery. You have every right to be scared....its a big operation and long recovery. I  PROMISE you will not regret it. You will get your life back. I am forever thankful to the ONE GI doc and Surgeon that finally took me serious after 8 years of pure MISERY (hence my name). If any of you have any other questions.....feel free.

Blessings.

Lizzie

Lizzie,

Thanks so much for the update.  I followed your story after surgery, and wondered how you were doing now.  It's great to know that you're well, and feeling healthy.

I hope the biofeedback works for you.  My surgeon wanted me to have it before surgery, and it really didn't help me, but at least we tried.  My problem is that when I'm supposed to push, I'm actually holding in.  I know the little lines on the screen when you try pushing, holding, etc. were always going the wrong way for me.  Is that the same problem you have?  I was told I have pelvic floor dysfunction.

I hope you continue to do well, and keep us updated on your progress.  It is very scary, but reading your posts give us all hope!

Janie

Yesterday I stayed home from work because mystomach was cramping so bad.  The doctor has given me something called Hyomax that is supposed to help with the cramping, but it also causes constipation.  It used to work on my cramps, but now it doesn't even touch them.  I woke up with them again this morning and I thought I was going to die, and then somehow they just stopped.  So, here I am at work.  I figured I better come in since next Tuesday is my last day anyway. 

This afternoon is my pre-op appointment.  I see my surgeon at 1:30 and then I go over to the hospital.  I'm hoping today she'll explain what she meant when she told me it would be more difficult to do the surgery without a bag after she looked at my records.  She said she could do it but it would be more difficult.  I'm just praying it works.  Right now I just wish my surgey was next week instead of a week from Monday.  Even though I'm scared, I want to get it over with.

Anyway, thanks for letting me ramble...I tend to do that when I'm nervous. 

2Ris k- Good luck with your preop appointment. I wish you the best of luck. Let us know how it goes.

Lizzie

I have not posted in a while either.

To absbabs

  I had a TC 10/4/07 due to colonic inertia and an extreme dilation of the colon (called megacolon). I've had constipation, bloating, distention issues for many years (52 year old male).I have always been a very active person and never had any health issues. I never took laxatives because I was afraid of the long term effects.Everything came to a head when I was taken to the hospital for abdominal pain. My colon was extremely dilated. A normal colon is about 3 cm, mine was 15 to 24 cm! I was told I needed a TC immediately.After the surgery (open) I developed complications, peritonitis, abcesses, drains, etc (40 days in the hospital, 5 different admissions).It was very difficult but thank God for faith , it really works! But it was all worth it! Before surgery I failed the sitz marker study but passed small bowel series and anal- rectal test. I had the TC with ileorectal anastomosis meaning they connected my small intestine to my rectum.

   My recovery was very, very slow. I had between 20-30 bms a day but over the months my body began to adjust and the bms are less frequent. It all depends what I eat, how much sleep I get, and how stressful the day is. The texture of the BMs also change day by day, sometimes loose, sometimes formed (almost normal), sometimes watery. I always have my immodium handy just in case. I eat whatever I want but certain foods increase movements (salad, fruits).

     I thank Jesus every day for my surgery. I am still adjusting to my new plumbing and sometimes I get discouraged when my system doesn't do what I want it to do but I look back where I came from and it is a great life. No more bloating, no more praying for a bowel movement, no more distention. I am back to running, biking, and swimming. The people on this forum helped me much in my very early recovery and they told me that after surgery that I should be easy on myself and let TIME be your guide. A TC is major, major surgery and the recovery is like watching the grass grow, you do not see it grow but you cut it every Saturday! Good luck and hang in there!

Hi Absbabs,

If you do have frequent BM's when your ready to returm to work, You can ask the MD for Lomotil and this will slow you down.  I was told that immodium works on the large intestine which won't help but lomotil works on the small intestine.  It was a life saver for me...

Best wishes

Phyllis

Johnny- That is so wonderful to hear! It's so great to hear positive stories from people who would call their surgery a success. I cannot wait to feel normal, and any type of wait will be well worth it if I just don't have to feel this way anymore. And I understand about having to respect the recovery process.. I would hope I only have to be away from work for three weeks, but it'll be covered under med leave so i suppose it doesn't really matter if I have to go another week or two if some complications do arise.. I'm just the type to go stir crazy after too long if I'm not staying busy.  And it's like i told Phyllis, I guess I shouldn't complain about the possibilty of too many BMs when I would kill for ANY BM right now.. 

I'm SO glad for you that all went well and you're feeling less nerves!!

I am actually familiar with this additional pump you speak of.   I met a woman at my work who has had a TC done laparscopically with no bag.. so ever since I found that out I have been bombarding her for info, bless her soul haha.

But she explained to me a little bit about that pump. She said it was a great help to her.. She said they ended up removing it on like her 4th day in the hospital. And, I hate to have to throw a con into this mess.. But the only reason she mentioned the pump (because I was unaware such a thing existed.. was cause she said having that pump pulled out was the most painful part of the whole thing snd she wanted to prepare me, but she said it was over in a flash and it was worth having it there for the time that it was because it helped so much. But as far as I'm concerned, if having a pump removed is the worst part then I'll throw myself a lil party.

about your parts moving around.. I believe I heard someone give you the example of a large living room and minimal furniture. I really liked that example, and I think it's a pretty good analogy of how things stick to their place. You might have minimal shifting, but things aren't going to be having a free for all in your body. Did you pose this question/concern to your surgeon??

And your last question about using the bathroom.. I was actually wondering the same thing!!!

But, again, I'm glad your feeling better about things and you're almost on your way to a new you and better way of living!!!!

After my TC I experienced no pain, just discomfort in my abdominal area. I did not use my pain pump too much. I did experience spasms in my abdomen but medication fixed that. I just felt completely drained by the surgery and felt I had been thru a heavyweght fight. You have to remember that this is major, major surgery and recovery is a long process. The biggest mistake my surgeon made was telling me that the recovery period was 3-6 weeks. Sure, I had rare major complications (peritonitis, abcesses, drains, heavy antibiotics) however even without those problems the body is still in shock and it needs plenty of time to re-group. The MOST important thing to do is to fight the desire to stay in bed. You MUST get up as soon as possible and start walking. You will not hurt yourself doing this. Do not worry, the nurses and aides will be getting you up every morning. You have to get the body moving so it can begin the healing process. The more you walk the shorter the stay and the sooner your tummy will begin working. Your small intestines do not realize early on that they will have a new job to perform namely taking over for the colon. They are in shock and need to adjust so there will be some discomfort and uneasiness. Your abdomen will feel weird at first without the colon. This gets better over time. Everything in the abdomen naturally  re-distributes. Everything falls into place as the body heals. Eating will improve over time. You will have many BMs when you first leave the hospital. But do not get discouraged- it is a natural result of the surgery. They will be loose and you will notice that the food in the stool appears undigested. This is normal. Your colon was just a storage area for your waste. The small intestines takes out all your nutrients and then would dump the waste into your colon so water could be removed and the stool could be formed. You do not need your colon to survive and in my case due to colonic inertia my colon was no longer my friend. He had to be taken out and that is what you have to remember. At first you will have difficulty with certain foods as your system adjusts. Believe it or not I was told to eat fiber rich foods and take metemucil. It really helped because it gave me more formed stools. As TIME goes on you will SLOWLYYYY see improvement. Some good days ,some bad days, some days with very loose stools other days with toothpaste like formed stools. They will change day by day. The frequency of the stools will decrease as time goes by. I was going 20-25 times a day for the first couple of weeks but over time they really slowed down. I now go about 5X a day 10 months post op and it is now a wonderful feeling. At first I felt like I could not control my bowels but I now have complete control without the bloating and discomfort. After a meal I have a bowel movement and that is WONDERFUL. I can go on vacation, I no longer have to scope out bathrooms everywhere I go. No more wipes in my back pockets. I go every morning, after every meal and before I go to bed. How great is that! Before my surgery I would pray for any kind of BM. My abdomen would be distended and the bloating was painful. Life was difficult. Even though I have been thru alot I would do it again in a second. The most important thing to remember with your recovery is that everyone is different when it comes to time. Be easy on yourself and remember that EVERYTHING happens for a reason. Acceptance is the key. Sure, it will be a grind and it is a tough recovery but when you come thru the other side you will be extremely grateful. One more thing- there is nothing wrong with getting some help with the mental part of the recovery. I saw a therapist for about 6 mos after the surgery and she helped me alot. She explained that the stress of major surgery and the change in your body can cause depression. My 40 day hospital visit resulted in a bout with some PTSD (Post Traumatic Stress Disorder). Thru therapy and my own religious beliefs I am dealing with it. Listen to your doctors, follow directions, keep walking forward, take it one day at a time, patience, patience, patience, and you will be fine!

JB

This is the first time I have posted and all of your questions made me realize I might be of some help.  This sight was very helpful to me before I had my subtotal on 7/17/08.  My surgery was open but I was only in the hospital for 5 days; I was one of the shortest stays that my surgeon had.  For pain control I had an epidural that was extremely helpful because I was only numb in the stomach area, there was no pump for me to push and they took it out the day before I came home.  Nobody mentioned the NG tube, you will most likely have one for a day or two, it empties the fluids from your stomach; mine was in for one day.  The nurses will get you up walking the next day and encourage you to walk, with the pain meds you should be fine walking, just use a pillow to hold onto your syomach when you are getting out of bed.  I too have had a hysterectomy, spleen and gall bladder removed so I have a lot of parts "missing" and yes it does feel strange, I still spend the night-time with a pillow tucked to my stomach and I rode in my car with a pillow for a long time.  A friend who had abdominal surgery suggested a compression wrap but I never asked about one; she said it "holds" things in place and makes you feel much better.  You might want to ask about one if you need it later.  My surgeon gave me MOM the 2nd day to get things started and it hasn't stopped yet.  I have never been happier or healthier.  My system has slowed down to about 8-10x's a day right now and I am still on a low residue/fiber diet.  I have to watch taking supplements and things like that but I see a kinesiologist 2x's a month to help with digestion and healing.  I went back to work full time after 6 wks., I'm still quite tired and have to be careful not to get a hernia, but I would have this surgery again in a second and would reccomend it to anyone.  I have probably suffered all my life, but have severely for the past 6yrs. I went to 5 different GI drs., had pancreatitis 3x's, exploratory surgery w/ severe adhesions that they thought 'cured' me at one point, a colonoscopy that the prep stayed in my system for 10 days. I used Miralax 2 capfuls 4x's a day, Lactulose 2 TBLS. 3x's a day, Amitiza 2x's a day  FiberChoice 4 tabs a day & this only produced small pellets once a month if I was lucky.  Finally my previous GI suggested the surgery (which I had never heard of) on the day my husband got out of the hospital for hip resurfacing- so I was by myself and 3 hrs away because we had long given up on drs in our hometown.  I finally found the best surgeon & GI even though they are 3 hrs away.  My GI keeps close tabs on me, they call me to see how things are going, they are like know others I have dealt with. One other thing, I do have to drink something with electrolytes to keep me hydrated and balanced.  If you have any more questions, just ask I hope this helps.  I wish you the very best and I'll been praying for you, you'll be amazed at how well you are going to feel.  

FinallyFree