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Posted 5/18/2009 9:49 PM (GMT 0)
After 30 years and 4 doctors telling me the only way to deal with my severe colonic inertia is a total colectomy, I am scheduled for the surgery (reattach small intestines to rectum - no bag) on June 4. I am a 56 woman as fit and active as I can be dealing with this condition. I have tried every traditional and nontraditional means of dealing with my constipation. I have no function without an enema and sometimes not even when I use one. Laxatives have no effect at all. My doctors have no other suggestions, medications, or treatments to offer me. I am trying to remain positive and confident that this will be a good thing, but truthfully I am scared to death. I read posts from a couple of other people who were recently operated on and hope they are doing well. I would appreciate hearing from them or anyone who's been there - and survived.  Thanks! Jelly
Posted 5/19/2009 3:41 PM (GMT 0)
I don't know much about colonic inertia but I just had my entire colon and rectum removed. I am doing great! I was sitting up several hours after surgery and walking and going outside the next day. I was only in the hospital 4 days. I think it makes a great difference that you are fit and active, that will help your recovery time! When you wake up from surgery you will feel better just knowing that you don't have a rotten colon inside you making you miserable! I had my surgery laparoscopic which also helps you heal faster. Good luck with everything!

Holly
Posted 5/19/2009 5:08 PM (GMT 0)
Thanks so much for your reply. I am glad to hear that you did so well after your surgery; it's very encouraging. I, too, hope to be up and around ASAP. And you're right, I will feel better knowing that I am no longer hauling around this nonfunctioning part of me. Still, sometimes when I think it through I am so frightened it takes my breath away. I suppose that's to be expected... I am trying so hard to remain positive and upbeat, but at night when the lights are out and I'm alone with my fears, I get so scared. Last night I sat outside on the porch and cried for a couple of hours. I could always awaken my husband, and he would be as supportive as ever, but the poor guy needs his sleep. I felt better after a good cry and after once again examining my reasons for doing this. It's not like I haven't tried everything availalbe to me. So - having said that, I will move on through my day knowing that there are kind people like you out there that are thinking of me and wishing me well..what a gift!!

Jelly
Posted 5/19/2009 11:12 PM (GMT 0)
Hi, Jelly!

I had a total colectomy on May 6th. It was a hand-assisted laproscopic surgery. I, too, was able to keep my rectum and have my small intestine attached to it... no bag involved. I was up the next day, took a small walk in the hospital. I was eating solid food the 2nd day, and was released from the hospital the 3rd day after surgery... truly amazing! I have had a nice 2 weeks learning about my new 'habits'... I am averaging about 10 BMs per day at this point, some are even semi-solid. My surgical team told me to eat whatever I wanted and that my body would let me know right away if something didn't agree with me. So far, kettle corn (a craving!) and saurkraut are big no-no foods. I am vegan and have enjoyed lots of variety in my diet so far, including fresh, raw veggies and fruits, pastas, beans, cooked veggies, grains and breads.

I do tire easily, but I walk every day. I made a pasta/veggie salad for dinner tonight... my first turn in the kitchen since surgery. I went out on Saturday to a farmer's market and a botanical garden for short visits. I spend alot of time in the recliner during the day, but get up and make my breakfast and lunch, go to the bathroom, shower, dress, putter around the house and garden, and do a little paper art by myself.

I am still taking 3 - 4 Vicodin a day, and do have some lingering pain, but very slight. I have my checkup with the surgical team tomorrow, and I do have some questions for them, so I will know more then.

My best advice is get to know your surgical team very well, ask TONS of questions of them, find out before the surgery who your point of contact on the hospital floor will be and stay in close contact with that person. Our surgical team had a full time PA on staff at the hospital that followed their post surgical patients, so we contacted her with every question or concern during our hospital stay. Be very honest with the staff about any anxiety, side effects from anesthesia, past surgical experiences, etc. that may help you recover faster. Have a special person (spouse, family member, friend) stay with you as much as possible while you are in the hospital. Our hospital has no set visiting schedule and allowed my husband to stay with me 24/7 while I was there... there was even a sleep couch for him in the room. He was able to help me to the restroom, get showered, get food and drink, etc. without making me wait for a staff member to have the time to assist me. I believe this GREATLY facilitated by recovery. If you are in any way uncomfortable, communicate that effectively with the staff... you are your best advocate.

I know that it's scary. I have been through several surgeries in the past, but this one scared me most of all. Try your best to be prepared and if necessary, take something for anxiety before the surgery... I did! My experience has been SO POSITIVE and I know yours can be as well.

Wishing you all the best-
Donna Rae
Posted 5/20/2009 4:32 PM (GMT 0)
I've been keeping a gratitude journal for several years; Donna Rae you were the entry last evening. I can't tell you how reassuring and uplifting your post was. I had so longed to hear from someone who'd actually been through what is coming up for me. Our surgeries will be a bit different since my surgeon has opted to open me up - the reason being that I have a megacolon (so much that he can't even tell where it goes in the mid section) that he feels it would be best for him to see it in its entirety. I did have another surgeon say he could do it with a laprascope, but I've chosen to go this route. I really like the surgeon and he comes highly recommended.

I have to tell you that last night was the first peaceful night's sleep I've had since I learned this definitively needed to be done. I have you to thank for that - so thank you! You were the angel I needed yesterday. Please let me know how you progress.

Thanks again for being there - Jelly
Posted 5/21/2009 12:15 AM (GMT 0)
I had a partial colectomy on May 7th, though I was supposed to have a full, but it turns out my disease was not near as bad. (I have Crohn's). Part of my rectum was left to heal and they *might* let me re-connect later. But, we shall see.

I won't lie, it is painful, and it is difficult (the surgery, that is). But, what is huge for you is that you are active and fit. I, on the other hand, have been slowly deterioating and on constant pain medication for 10 months prior to my surgery, so my recovery has been a little tough. Overall though, I feel great (thought suddenly about 10min ago - I doubled over in pain). You rhospital that you will have surgery at has an ostomy (ET or WOC) nurse. Call and see if you can talk to them pre-surgery. She relieved ALL of my fears within 10 min of us talking prior to wheeling me to the OR.

The key is to get up and walk. Since I was on pain meds prior to surgery, the problem for me was that they couldn't get my pain under control, therefore i wasn't sleeping, and then the pain was just escallating because you need sleep to heal. I also had no appetite (still dealing - but it's helping the steroid weight shed...i had a LOT of it over the years), so I couldn't fuel myself. I stayed on a PCA pain pump for nearly 6 days. That is NOT normal...normal is 1-2 days. So, hang in there. Your recovery should be a lot better then mine. They had to switch me from morphine to dilaudid and then add in toridol (until I maxed it out) and they also bumped my dilaudid to the max dose. Yeah, I was in-coherent for about 48-72 hours. Apparently, lots of people came to see me, and I had no clue. I even said a lot of things. But, like I said, I'm the extreme...and hopefully, you will be the other extreme, merely because you are fit.

Hang in there, and ask questions here if you need to. It's been a great board for things for me.
Posted 5/21/2009 1:07 AM (GMT 0)
Hi, Jelly!

So glad you were able to get some rest!

I was supposed to have open surgery, too, but my surgeon really wanted to try lapro and open me up if he had to. I have had several surgeries, have diabetes and high blood pressure, have only one kidney, blah, blah, blah, so he wanted to try lapro to give me the best chance for a quick recovery. Turns out I was the first patient ever in my hospital to have a single incision lapro total colectomy... so I'm a pioneer! I saw the surgeon today, and he is delighted with my progress. He's given me the go ahead to increase my activity, just don't lift or use my stomach muscles yet.

After all that good news, I had brown rice for the first time since surgery and BAM! I was in the bathroom most of the afternoon. Obviously, that was more than my digestive tract was willing to handle right now! I'd enjoyed white rice, other grains, and grainy breads, so I had no idea this would be a problem. Oh well!

I am so happy to hear you are comfortable with your surgeon. That makes all the difference. My surgeon is so open to all my questions and is willing to take the time to answer even the silliest things. For instance (and I know this isn't polite conversation) I was concerned that since surgery I cannot tell when I have gas and when it's going to be something more, so I always just go to the bathroom to avoid accidents. I was concerned that this would be a lasting problem, and was able to chat about it with the surgeon today. He tells me that much research has been done on HOW a person knows which is which, gas or solid, and no one knows how the person can tell, but we can. Thankfully, the ability to tell the difference is still there, he says, and I will be able to discern the difference again in time. *whew!* Just being able to chat openly about these and other matters with your doctor is so important.

I had the surgery because MANY polyps were found during a diagnostic colonoscopy (my first). The pathology report showed that many of these polyps had high grade displaysia, and would have become cancerous soon. Thankfully, the wayward cells were all contained in the colon, and all the lymph nodes removed were clear, so I have dodged a colon cancer bullet. I'm so sorry about your colonic inertia... it's a devastating condition and I'm glad you are getting help to resolve it.

I know you'll do just fine! Don't worry (I know that's difficult), review your gratitude journal entries, and walk confidently into your healed and whole future!
Donna Rae
Posted 5/21/2009 3:03 AM (GMT 0)
Hi Jelly,

Welcome!  I had a subtotal in July 08.  I have about 2 inches of my colon left.  My surgery was open due to many abdominal surgeries.  I was in the hospital for 5 days and had an NG tube for 2 days.  My surgeon gave me an epidural following the surgery for pain control; it was the absolute best.  He started me with MOM the 2nd day which started my bms and then started me on solid food.  I started with about 20 bms a day - never any accidents, by 6 weeks I went back to work full time and was having about 8-10 bms a day.  I was put on the low residue/fiber diet following surgery and still follow it as fresh fruits and such cause diarrhea.  I am now down to 2-3 bms a day.

I will say I was very determined that this surgery was going to work before I had it.  I spent a lot of time praying for healing and I didn't do ANYTHING to mess up my healing of this surgery.  I hired a housecleaner, didn't cook, etc.

This was the best thing that I have ever done and all of my other drs have commented on how healthy I look now.

I wish you the very best and will keep you in my thoughts and prayers.

Judy

Posted 5/21/2009 3:32 AM (GMT 0)
Hi there!

I had a subtotal done on april 2nd. They too cut me open. I had about 20 staples down the middle of my tummy. I stayed in the hospital for 4 and a half days. My dr gave me a epdidural before surgery but it ended up not working, so I was put on a morphine pump. The pain for the first two weeks is not going to be fun. Especially the gas pain...that's what I had the worse.... invest in gas x....it'll be your best friend..I started taking that as soon as I went home from the hospital. I am 24 and suffered from severe colonic inertia since I was 18, as soon as I left that hospital I could feel the difference. I can eat and not get sick, I have so much energy I never had before, my depression went away and I was taken off the meds...its been a miracle...it is such a big surgery but its worth it

My dr didn't restrict my eating much in the hospital... he let me eat when I felt like I could... I went a little fast and ate a piece of cheesecake after day 3..and I kept on eating....lol.... I learned my lesson after I vomited it all up 2 days later.. so learn from me and take it slow. I promise you that once you leave that hospital your gona feel amazing.
Posted 5/21/2009 8:43 AM (GMT 0)
Jelly,
It looks like you have found others in similar shoes as you and can relate to what you are looking at for your upcoming surgery. Stay connected to this forum and ask Any quesions you may have. We, collectively, can try to help you thru this trying time.

Your journal is a great way to keep a positive attitude and if there is anything we can do to assist you, please let us know. Keep your chin raised high. You will sail thru this one and move on to a healthy future.
Posted 5/21/2009 5:19 PM (GMT 0)

You guys are amazing! Thanks so much for sharing your experiences. It makes me feel much less alone and frightened. I met with a women's group I've been meeting with every Wed night for the past 23 years and told them about this forum and how important you were all becoming to me. They send their thanks!

I have been truly miserable with bloating the past couple of days. Nothing helps so obviously, as much as I'd like, nothing is going to change until the colon comes out.

Judy, I too am taking all the steps I can to be good to myself (housekeeper, dog sitter). I'm hoping to be back to work in 4 - 6 weeks... Did you have to have an NG tube or did the MOM work so you didn't have to? I am really scared about the NG tube. My mother-in-law nearly went crazy when she had one and she was the calmest woman on the planet.

Amanda May, did the gax-x work for you before the surgery? I've never had an luck with it but I will definitely try it afterwards if it helped you.

I haven't been able to eat anything but cereal, lettuce, and Lactose Free Slimfast for about the past 2 years. Occassionally I can eat some fish. Everything else either creates horrendous gas pains and/or stays in my colon for days. Is anyone else out there lactose intolerant? I only learned this by a process of elimination (ha! I wish!) that a nutritionist suggested I try. I do love brown rice though... I hope to be able to eat pasta again...instead of having it turn into concrete!

I do have a strong belief that my attitude will affect the outcome of this procedure so I am as positive as I can be. I pray daily for the strength and courage to walk through this with at least some modicum of dignity.  All of you will help me do that.  Thank you! Jelly

Posted 5/22/2009 1:03 AM (GMT 0)
Hi, Jelly!

Just a quick note: I didn't have an NG tube at all. My surgeon doesn't use them, so I wouldn't have had one even if the surgery had ended up being open.

All the best,
Donna Rae
Posted 5/22/2009 3:48 AM (GMT 0)
Jelly,
You sound like me! I also went through 30 years of colon inertia and it took me a long time to finallly decide.to have surgery. I am 53, and also very active (or I was until surgery!) I had my total colectomy (hand assisted lap) on March 17, and I'm doing pretty well. Still having lots of bms a day and trying to figure out what and when to eat, but as far as the surgery went, really had no problems. It's not fun, that's for sure, but by the time I came home (8 days) I was feeling pretty well. My surgeon didn't leave any of the large intestine, and I'm definitely going alot. I also have a pelvic floor problem, so sometimes I feel like there is more inside that won't come out. But it's so nice to not be constipated for a week or more at a time until I took massive doses of laxatives!

I did have a NG tube for 5 days. My doctor put it in during surgery and while it wasn't great, I was fine with it. I really didn't want to have to have one inserted while I was awake, so I was happy to wake up with it. If you do have one, just try not to think about it. The first 2 days I was doped up pretty good, and by then I was used to it.

Keep us posted on how you do. I'm sure you'll be fine!!

Janie
Posted 5/23/2009 2:33 AM (GMT 0)

Hi Jelly,

I had an NG tube in for 2 days; my dr wanted it in for only one and when he came in the 2nd day and asked why it was still there and I told him the floor surgeons said to leave it in, he went and got some gloves and took it out.  It was probably the most uncomfotable part of the surgery but I've had one before due to pancreatitis so I knew what I was in for.  I feels like something is stuck in your throat; I don't want to scare you but I do want to prepare you.

I had many food intolerances before my surgery - wheat, milk, etc. I see a nutritionist now and am very careful with my diet.  Like I said before I do not want to do anything to mess this surgery up.

If you have any more questions please feel free to do so; I hope I can help you.

Blessings, peace and prayers.

Judy

Posted 5/24/2009 4:45 PM (GMT 0)
Hello Everyone

I have just joined the site and live in the UK. You will see from my medical history that I have similar probs to a lot of people on this site and am trying to chat with those. Here in the UK we call it pseudo obstruction (or at least I think it is the same thing! I used to get bouts of constipation, followed only by what I can describe as projectile diarrhoea!). I joined the Ileostomy Association, but there doesn't seem to be anyone with a similar complaint. Here in the UK it is very rare and I was the 4th diagnosed in the UK but that was in 1991!

I had a Ileo performed in Dec, but cannot manage it very well and want rid. They say the only alternative is to remove what is left of my colon and join my small bowel to my rectum (my sigmoid was removed in 95), called an ileo rectal anastomosis. Which a few people on here seem to have had done. I am worried about incontinence and am hoping to hear how others manage (I have to have proctogram tests done first).

I cannot tell you how great it is reading about others suffering in a similar way - I always feel so alone! I guess most of you are in the US? The UK is such a small place so perhaps there are fewer sufferers?

Jelly, wishing you all the best for your surgery, which I believe is fairly soon! I have an endoscopy the same day, and will be thinking of you!

All the best everyone, F1F
Posted 5/26/2009 5:39 PM (GMT 0)

I woke up at 4:30 for my 8 am preadmission appt. The minute the alarm went off, I burst into tears. My  husband held me until I cried myself out. The appt went fine. My BP was through the roof but I suppose that's to be expected at this stage of the game. The pre-ad nurse was very kind and answered as many questions as she could.

But I am so scared...I keep thinking that someone else must be going through this, that it really can't be me who is going to have her colon removed in a week. I had a total meltdown at the grocery store on Sat. I feel so needy, so whiney, and like such a baby - definitely NOT the woman I normally am. So I thought I would come here and tell you guys what's going on and hope that you will send whatever strength and courage you can spare. Thanks, Jelly

Posted 5/26/2009 6:58 PM (GMT 0)
Oh, Jelly! I know exactly how you are feeling! I had some of the same feelings before my surgery: Is this really happening to ME??? Why does my entire colon have to come out? How different will things be and for how long? This is all SO NORMAL. (I can say that because I have several psychologists in my family who've told me so!!! *smile*)

And I had a similar weekend this weekend, 2 1/2 weeks after surgery. I did a little too much gardening and activity, I ate some new foods that I reacted badly to (MANY, many BMs and pain), and I felt an emotional wreck because I had planned to return to church this week, but I was not well enough to do that.

But a new day has dawned. I am so thankful that I have escaped colon cancer. I am so grateful for the amazing support of friends and family. I am excited that I can be up, showered, dressed, eat some breakfast and do a little artwork before my husband comes home to check on me at lunchtime. I am stronger each day, walking, doing a little laundry, making some simple foods, and venturing out for small trips to the farmer's market or the garden center. Before long I will be driving and shopping and heading back to work.

This is not an easy road, but it is DO-ABLE! In your case, this is an answer to long suffering with a difficult condition. You are amazing to face this, and you will do just fine. Please don't be hard on yourself. This is our time to heal and gather strength and get re-acquainted with our bodies. Take your time, be gentle and loving with yourself, and don't overdo (like I did!). If you are feeling overwhelmed, accept that as completely normal and ask for support from loved ones or from a trained counselor. One of my psychologist family members said that it's kind of a grieving for the life we thought we had, for what we have lost, and getting used to the new life ahead of us.

Know that we are all thinking of you and hoping the very best for you,
Donna Rae
Posted 5/26/2009 7:10 PM (GMT 0)

Hi Jelly,

I know you're going through a very scary time right now but soon you will feel better than you have felt in years.  Fear of the unknown is difficult and hearing other people's stories is also adds to our anxiety but remember that everybody is different and people all heal differently.

This is the absolute best site to find support and love from people who understand what we are going through, but I know if I had read all the things that had happened to people on here before my surgery I would have been scared to death; instead, I read a couple of posts about the surgery and was determined I wasn't getting a bag and woke up without out one.  Not saying that's the reason why I didn't get one, but I remained strong and had a very positve attitude before my surgery, my surgery was 3 hours away & my husband cried the whole way so I consoled him.

I know you're a strong person and you can do this!  Everything will be fine just as mine was; before you know it you will be up and around and going back to work.

I do have a few suggestions for you: take an ipod to listen to at night so you don't hear all the hospital sounds; make sure you have wipes, I only use prep-H wipes, they will be your new best friend; I never use toilet paper any more, I also have a tube of A & D ointment not cream on hand at all times,  you'll tend to get sore very easily, slippers that just slip on so you don't have to bend over to put them on, pjs didn't really work as I had a catherer, IVs & epidural, I didn't bring my laptop bc I wasn't sure about the hospital security, some books or magazines, but I downloaded movies on my ipod so I watched them.

Try not to worry too much; many of us have had great experiences and quick healing from this surgery.  We are ALL here for you and will keep you in our prayers.

Blessings, peace and prayers,

Judy

Posted 5/26/2009 7:18 PM (GMT 0)
Donna, thanks SO much!! i just enjoyed so much reading your lovely encouraging post. it just did me so good reading it, as i'm facing this same surgery too!! thanks so much for making Jelly and me too feel better.

yeah Jelly..... good luck to you from me too, and hopefully, i'm going to be in the same boat as you soon, i just CAN'T wait!!!!!
Posted 5/26/2009 7:44 PM (GMT 0)

Thank you Donna Rae and Judy,

Once again you guys have lifted me up in a way that no one who hasn't been through this could. I have worked with a psychologist who also says that my behavior is "normal" and to be expected. Nonetheless, when in the middle of an almost hysterical crying jag, I did NOT feel normal. Your kind words have helped me center myself again. Thank you so much!

Judy, it's interesting what you said about other peoples' stories scaring you. I felt the same way and could barely read the posts for a long time. I didn't want to become a member because I really didn't want to hear horror stories (and jeepers have I heard a few!). I, too, am determined that I will not have a bag. My surgeon says I won't so I am trusting him completely in that regard.  Thank you for the hospital suggestions. I will take my Ipod but not the laptop. The nurse this morning said that those kinds of things do tend to be "misplaced." I will invest in some wipes and the A/D ointment. And I do have slippers that can be slipped on. I do hate hospital gowns (who doesn't) but I keep telling myself that I can stand nearly anything for 5 days (that's as long as I plan to stay).

2b ColonFree, these are really nice people at this site. They have offered me so much encouragement and support in the past couple of weeks...they are truly amazing. I only hope that once I am on the other side of this that my experience, strength, and hope will help someone else the way they have helped me.  I can't seem to say thank you enough! Jelly

Posted 6/2/2009 5:33 PM (GMT 0)

Hi Everyone,

I just wanted to check in with you before Thursday. I have had a couple of bad evenings - seems like that's when the reality of this surgery hits me. I am so fortunate, though, to have such an incredibly supportive and patient husband. He's truly been amazing. Today is our 25th wedding anniversary. We've been together for 33 years (and yes, we were babies when we met, HA!). We had planned to go to one of our favorite vacation places to renew our vows, but we are postponing it until September. Then I will feel like biking and hiking and eating, and we'll be able to have a great time.

I will do the prep tomorrow. I have 2 jugs to drink instead of one...such fun. Actually, I don't mind the cleaned out feeling. It's the only time I ever feel that way. It will be so nice to feel that way after the surgery.

Please continue to send healing thoughts my way. I go into surgery at 9:30 Thursday so regardless of the time zone you are in please think of me.

I sincerely appreciate all of your supportive, comfort, and kind words. So no matter who you are or where you are, thank you for being there for me. Jelly

Posted 6/2/2009 6:57 PM (GMT 0)
Jelly, good luck, you'll be in my thoughts and prayers, wish you a successful surgery and speedy recovery and G-D bless! keep us posted.
Posted 6/2/2009 7:21 PM (GMT 0)
Thanks so much for your support. I will keep you posted once I am home from the hospital. I know everything is going to be just fine, but hearing from you helps so much, Jelly

Posted 6/3/2009 2:33 AM (GMT 0)
Jelly,
Just want to add my good wishes! I had my surgery for colon inertia on March 17, and I am finally going to the bathroom like a big girl!! I can't begin to tell you how much better I feel. The surgery isn't fun, but the rewards are incredible. Best wishes!!!

Janie
Posted 6/3/2009 4:53 PM (GMT 0)

Jelly,

Just wanted you to know that you are in my prayers.  You will be so happy when this all over and so pleased with the results.

Bleesings, peace, and prayers,

Judy

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