Total colectomy Part 15

Seems we got locked out of 14...

Hi Michelle.

Good luck friday...we all will be thinking good thoughts for you...

I live in Mississippi.  Mine will be "open" surgery due to previous abd. surgeries.  What are you having and how long did the doc tell you to expect to stay, mine said 7-10 days. With the MS I tend to have a prolonged recovery.

 My doc told me to eat light tomorrow, soft and liquids then Thurs. before I"m admitted that day for prep just clear liquids.  I'm eating very light today with lots of liquids.

You'll be in my prayers.    I'm blessed that I only have a 20 minute drive to the hospital.  God's speed to you.

 Hi everyone!!  I've been unable to post for several days, been sick with a bad bout of bronchitis !!  I've really missed chatting with all of you.

MICHELLE & STEPHANIE - I'm so sorry I wasn't here to encourage and comfort you prior to surgery.  I look forward to your return.  May God bless and keep you during and after surgery!!

ADVISESEEKER - Nice to see you post again - I remember you !!  I too, after agressive treatment with a load of medications, found NO relief either.  I was never able to take the Duloclax due to the extreme cramping it gave me.  I used Exlax, extra strength, also in a very large doses (48 pills in a three day span).  Eventually, along with all the other meds, NOTHING worked for at least 6/8 months prior to surgery and I was absolutely miserable and also very sick.

My stool was very hard as well (this will sound gross).  The ONLY thing I could do was  manually remove the stool from my rectum.  It would be extremely large and hard as a rock, not to mention, very painful!!  This was a lifetime problem for me (43 years) and I felt I had no other choice but the surgery.  I finally confronted my surgeon concerning ALL the medications and how they were actually making me feel worse, NOT better.  He advised that he had to take the route of the medications first for the insurance company to approve and pay for the surgery (these insurance companies are something else).  Finally the insurance company approved the surgery and I had it three weeks after approval.

I can and will tell you that this was the best decision I've ever made in my life.  Immediate post-op recovery is definitely something no one can prepare you for, we can only give our actual experience.  This is a VERY HUGE surgery, so my advise is to seek as much information as possible and discuss it with your surgeon. 

Regaining a life I never had is nothing short of a miracle for me.  Yes, the surgery and recovery process is a long process, but in order to have a life, I had no other choice and I would do it again without hesitation!!!

Hope this helps.

So, how was your first week back to work?  Did you find it tiring?  Did you feel comfortable having several bm's a day?  I'm glad you're regaining your life!!

You know Resa, you're absolutely 100% correct that it was God's timing and not ours.  Like you said, every doctor would dismiss it as though constipation isn't a big deal.  If I had a dollar for every time I was told to "eat more fiber"- "take fiber supplements" - "drink more water" - "try stool softeners" - the list goes on and on, I'd have A LOT of money!

I too am so thankful that my GI referred me to my colorectal surgeon.  After doing every possible test to finally confirm Colonic Inertia was a blessing - I finally had a NAME for my condition.  After taking Zelnorm and Amitiza at the same time, along with Miralax three times a day with no relieve, the surgeon really pushed the insurance to cover the surgery.

So how much weight have you lost to date?  My final number was 25 pounds, however, since my appetitie returned, eight pounds has too !!!!!  Isn't it amazing how people feel the need they "must" speculate as to why you were out of work?  Just let them think what they want - if you wanted them to know, you surely would have told them LOL!!!!!

I hope everyone else is doing good!!  Please keep us posted!!!

First I'd like to offer good thoughts and prayers for those of you that have recently undergone or are getting ready to undergo surgery. All of you seem like wonderful people that are fighting the same battle.

I'll give you a bit of background first. I have had a LOT of surgeries in my lifetime...the colectomy will be number 35. Most of my surgeries were due to breast cancer at 37 and 10 knee surgeries (all open). The others were gallbladder, total hysterectomy, inguinal hernia, femoral hernia, and three lymph node removals from my neck. I've had a total of five abdominal/pelvic surgeries for ovarian remnant syndrome. That's where your ovary grows back (Yes, you're reading that correctly) after it has been removed. Two years ago I had a partial colectomy due to severe diverticular disease with bladder fissures. My problem started after that surgery. Before that, I had normal BMs.

I have tried the obvious fiber supplements plus Zelnorm and Amitizia; none worked. I've also tried senna products to no avail. The only thing that will work is a double or triple dose of MOM, and that takes about 18 hours before anything happens. Of course there is also the magnesium citrate that will work, but we all know those aren't the best things to use.

I recently had a Sitz marker test and 19 were present at the end of the study. The only reason I lost 5 was from eating some bad Chinese food one night. LOL  Anyway, my GI has said that my best bet is a total colectomy and he has spoken to two surgeons (one at Stanford and one at UC Davis). They want me to have a colonoscopy first. This is scheduled for the 21st and will have to be done with Propofol because of a tortuous colon. They want to make sure there are no strictures. I just had a colonoscopy about a year ago that showed the anastomosis to be fine, but I did have four precancerous polyps.

I'm wondering how much time I'll need off from work for this surgery?  I understand that it's about 7-10 days in the hospital, but I'm unsure how much time after that. I work at a doctor's office doing coding/billing/transcription, so it's not a strenuous job.

I look forward to getting to know all of you better.

Terri

SHELLYPOO - Hi Michelle, my heartfelt thoughts are with you.  I'm so sorry to hear of the issues you're now going thru.

As I've stated several times here, NOTHING can prepare you for the immediate post-op suffering part of this surgery.  We can only share our stories and help others who are having some issues.  I know it sounds like the impossible, however, please know that you will feel better in a few short weeks - once things begin to adjust. 

The only part of nausea that I had a hard time dealing with was immediately after surgery due to the anesthesia (which has always been an issue with me after past surgeries).  In recovery they gave me several medications, which I think phenergan was one of them (this is a very strong medication that cancer patients use) and it didn't work unfortunately.  I was finally told that I couldn't have anymore medications - I was at my limit, so I basically started doing deep breathing and eventually that seemed to help some.

The pain for me was bearable (I have a high tolerance to pain).  In fact, they removed the morphine pump the following morning (I wasn't using it much) and started me on a pill form of pain medication (which was pretty strong stuff - Percocett - which was the ONLY medication that did ease the pain).

It is a very good sign that you've had your first bm!!  At first they will be very liquid, so don't be alarmed.  At first I didn't really have the "urge" either, but rest assured, that will be something you'll regain.

I can understand your feelings of "loosing" hope, HOWEVER, time is of the essence here and soon you WILL begin to feel much better.  I'm SO excited to hear that your surgery went well - that's a BLESSING!!!!!  I wish you the best and hope with all my heart that your pain, nausea, and fears will soon be a thing of the past!!!!

I wish I could offer more help, but hope something here encourages you!!

JILLIBEAN - Jill, I know from experience the discomfort of the belly being in pain, sore, and very tender.  I know it was a good 12 plus weeks for mine to improve.  You sure did have some set backs and I hope they are all behind you now!!  I too would have this surgery again without hesitation.

ADVISESEEKER - Please don't let the doctor doing the anorectal test discourage you in anyway!!  I know of people in their late teens and early twenties who've had this surgery, it isn't an age thing in my opinion, rather a fight for survival and regaining your life.  As far as it being "who's decision" - It was MY decision and the surgeon agreed with my decision.  I've also read that some insurance companies consider this as elective, yet others do not.

You cannot continue living the life you're living - that's NO life at all!!  I would demand the surgeon to take the steps to get this surgery approved and performed as soon as possible - DON'T give up and DON'T give in!!!!!  This surgery is what I consider REGAINING a life instead of existing, especially when the quality of life you should have is something you deserve!!!!!!

RESA - Great advise for those seeking it!!  Your experience and sharing it is well appreciated by those going thru this right now.  Thanks for helping others with your own experiences, the good and the bad!!  It's just all a part of this surgery and recovery process.  There is nothing easy about this surgery - it's HUGE - however, you and I, and so many others would have this surgery over without a second thought!!!

IRISH_MOM - Terri, nice to meet you and welcome!!!  Yes, there are some wonderful people here and I'm so thankful for each one and thakful they're a part of my life.  They've ALL helped me thru this process in more ways than I can count.  Boy, you sure have been thru SO MANY surgeries - WOW!!!  We all have been thru the vigorous cycle of ALL the medications which is past the point of helping, yet these doctors EXPECT us to continue on with this cycle!!

Each person is different in their healing process, some take more time than others.  It wouldn't be a fair statement to give a definitive "return" to your normal activities, even the return to work.

I hope this helps those in search for the answers they need.  Forgive me if I have typo's, I've typed quite a bit and after a while things seem to blur together.

God bless and keep each and every one of you!!

I insisted on soft foods instead of liquids, they are allowing me that.  i had a few bites of /kfc mashed potatoes and then some applesauce. t all travels so fast....I went every hour at night, I think I'm going to have to try the depends at night.  Any suggestins?  I have looked at them and don't know which are more comfortable. 

I am not taking any pain meds, I think the diaidid was making me more nuaseous.  I'll ask about advil.  Are there any meds/foods I should avoid right now?  How will I drink all the water I need when I'm off the drip without spending the day in the loo (literally)

thanks in advance for all you help.

I may be able to go home tonight or tomorrow.  They will pull my central line out today, so I will be free of every contrapment but will have no access in case of emergency.  I can only eat small bites of food but then my stomach hurts because it is hungry 2 hours later.  I am trying to drink my water but my stomach is so swollen I feel like a stuffed sausage!

I cannot wait to get home!!  I am still having some pain but I have so many weird affects from pain meds..feeling wired etc.. that i hate to take them.  The doc said I can take advil.

My dear hubby went to buy me some depends and came back with diapers that have tabs on the sides....they are awful.  as soon as I can he will have to get the other kind that pull-up.  He didn't see those kind at Walmart.

Thanks again for all your thoughts/prayers.  I will update you when I can.

So a quick story. I started my prep the Tuesday before surgery and then nothing on Wed the day we drove down and more prep on Thursday. Surgery Friday morning. Woke up with an epideral and felt wonderful....0 pain. Was fine till the next day when the epideral came out and I felt pain which took a while to bring the pain down and I then had the pump. My Ng tube was supposed to be left in, but I can remember coming out of surgery and them saying to bring me back in. I guess I some how coughed it up or something. I don't think I pulled it out. I was given pepsid right after surgery and throughout the 7 days in the hospital. I was also given Reglan to get my colon to wake up. I chewed gum probably the day after surgery which also I believe helped a great deal with dry mouth and to motivate my colon. My doctor per my request took a picture of my colon....gross, but interesting. I had 10" left of colon and 4" was used to reattach me. Not sure exactly how that works, but that's what he told hubby. I'm using vit e oil from wallgreens on scar. I took my first shower when we got to the hotel yesterday. Worst part is the gas pains for me. From right out of surgery to still now. Especially when getting out of bed. Hubby luckily stayed with me on a cot all the time as I was able to get a private room. I totally can't imagine doing it without him. I'd get to the side of the bed and have such a sharp pain on the lower right side. Now it moves and sometimes I'm ok when I'm walking around. I'd love to hear others about this pain and does it go away? As for eating....I started liquids on tuesday and wed soft foods and doc said anything is fine now, but I know better from these boards. It's soft for me for a while. I'm eating soups and yogurt, eggs and some soft breads.

Oh and I had thought my surgeon was just a general surgeon, but he actually is a colon surgeon. It's just that he does other things too. His big specialty and the reason I chose him was that he is one of the only docs in the US that specialize in adhesions with a glue that is natural and once you have surgery he sprays your insides with this glue that your body digests over about 20 days. By then the adhesions are less likely to grow back. This I believe is the reason I got this problem after a big stomach surgery I had in 2004. Because adhesions grew around my colon too much to work.

If I think of anything else I went through that might help others I'll post more. I'm really swollen, but really am at a point I thought I'd be at weeks down the road. So I'm happy so far. This is a rough surgery though....I had some just blah icky I hurt days last week. Oh and I gained 10 pounds and have hardly eaten anything in the last week and a half and my colon weighed 10-15lbs he said. They pumped me with too much IV fluid I think...so hopefully that will go down in the weeks to come.

Stephanie

JILLIBEAN - Thank you for the compliment!!  I feel so lead to stay here and help and/or encourage those in need.  I'm so blessed that I've made such wonderful friends here and hope to continue these friendships!!

I'm so sorry to hear that both of your daughters are dealing with colon issues !  I know this is hard on you to see them suffer, especially since we know the suffering they're going thru. 

What a blessing to hear you're feeling better with each passing day.  Yes, you may continue being sore and tender for several more weeks, just know - it does improve and that's when you will begin to feel even better!!

SHELLYPOO - How wonderful to hear all labs are good and you're feeling better by the day!!  It will take time for your body to get "accustomed" to not having the colon and everything being moved thru the small intestine.  Right now it's hard to see the future, however, it WILL GET better and things WILL SLOW down.  I was very fortunate that I didn't have to use the depends and was able to make it to the toilet just in time.

Nice to hear you were able to eat and tolerate the soft foods.  You will find that "soft" foods will be your main diet for the next several weeks.  For me personally, I had to avoid red meat and dairy for the first two months.  You will notice with time that your body will tolerate more foods and before you know it, you'll be able to eat more of a variety (also, your appetite will improve too) !!  I think it's awesome that you're able to deal with the pain without all the stronger drugs.  You will feel much better when you get home - there is NO place like home!!  Just remember that this is a long process and some days will be better than others.  So, don't get discouraged if/when that happens.  Our bodies have been thru a HUGE surgery. 

I'm sure you're very thankful for the support of your husband -that is a blessing to say the least!!!

ADVISESEEKER - You're not alone by feeling you've been thru the most embarrassing tests in your life.  I felt the very same way and was thankful they were done and over with when I finished.  I looked at it as "swallowing" my pride in order to find out my diagnoses.  I guess I was also born with a "slow transit" colon, as I've said before, I had this problem for 43 years and I'm so thankful for the total colectomy surgery - a surgery that has give me a new lease on life!!!

I wish you all the luck Monday with your appointment with the surgeon.  I know you would like for them to make the decision for you, however, you have to make this decision.  I can understand your fears, believe me, all of us here have faced these fears.  It's a matter of deciding if you can live life as you do now - or regaining a life you haven't had in a long time (or in my situation - a life I never had, so the decision to have the surgery for me wasn't too drastic OR too soon).

This is a HUGE surgery and recovery is long.  There is nothing we can say to prepare you for the immediate post-op, only give you our story, advise, and encouragement and see you thru the first couple of months post-op!!

I will tell you that I would have this surgery again tomorrow if I had to.  It was worth EVERY discomfort and many trials I went thru in order to receive "LIFE"!!!!

PHYLLIS - Thank you for your well given advise on the struggles you went thru going so many times a day right after surgery.  You've give hope to those who are having the same issues you had.  You're a jewel!!

I hope everyone else is doing good - we would love to hear from those who haven't posted in a while.  I hope everyone's Mother's Day is special and full of love!!!

I'm just taling advil for pain.  Oral pain meds don't do much for me.  I had noodles with one piece of amer. cheese melted on them for lunch and it was good.  I have lost about 7 lbs. so far but while I was in the hospital I weighed and had gained 6 lbs.  so I imagine I'm still carrying extra fluids.  My belly is quite swollen.

I look forward to a good nights sleep.  Oh, btw, my surgeon said I don't have to avoid delayed release drugs, she said that your stomach and small intestine do the absorbing.

I have to call the surgeon Monday to get my appt. to have all my staples removed.

Take care.  Happy Mother's Day.