Total colectomy Part 15

As Danaalbertine stated..My BMs are what you describe: WIthout laxatives - nothing, and with laxatives at first harder but the loose and sometimes watery. I think when you have to take such high amounts of laxatives, a lot of water gets pulled into your intestines and that will make it very loose.  I experienced this too and I do think it has something to do with the colon pulling in the water.  However, this is a temporary fix and doesn't mean that your colon is OK and functioning. 

The most important thing I can relate to you is....EVENTUALLY the laxatives WILL NOT work like they're working now - it only gets slower and slower until you're extremely sick from the overdose of the laxatives on your body!! 

This is a big decision I know, but I cannot stress enough, the benefits outweigh EVERYTHING!!!  Time isn't on your side when you have this condition and at some point, if not now, you will have to decide what's best for you!!!

SHELLY/Michelle - Thank you for researching and helping Dana - You're a real blessing and I'm sure she appreciates it!!  We do have some great people here don't we?

HELENSC - Forgive me for asking, but was your surgery in 2007 rather than 2006?  I will try to answer your questions as best I can OK?  Yes, you can work out and try to trim the belly, however, I would ask your surgeon on how strenuous your workouts can be (better safe than sorry).  Regarding depression post-op - well, I've suffered with depression for many, many years and I did feel more depression symptoms after the surgery.  My psychiatrist said it's more than likely due to the "trauma" we've been thru.  As you well know, the surgery is big, as well as, recovery long.  I did start feeling "emotionally" better the better I began to heal and improve.

I have regained some of the weight I lost immediately post-op and I think it's only normal, we regain or appetites along with our strength.  Regarding your question on still having some pain...each one of us is different and we all heal in our own way and time.  I personally didn't feel like my old self until 16 weeks post-op or a little longer.  The good news, YES - you will feel normal again, only a little better than "normal"!!!!

Thanks for your encouraging words to those who haven't yet had this surgery.  I agree WHOLEHEARTEDLY with you and I too would do it all over again without hesitation!!!

I can SO relate to having bm's once a month.  I pretty much lived that way for 43 years - YES - years! 

Thanks to Michelle and you for helping those still in the "decision making" process.  This is THE BEST forum/thread I've ever been a part of!!  I'm so blessed to have all you wonderful people an active part of my life.  I hope to continue helping and encouraging others who suffer with CI and how the TC has changed not only my life, but so many others!!!

I will also agree with you about NOT HAVING ANY REGRETS having this surgery - it is the best thing I could have done - EVER!!!

 ADVISESEEKER - I'm THRILLED that your decision was to go for the surgery.  The sooner the better for you!!!  I know that in this short period of time (10 to 20 days) that you will be anxious, have fears and concerns, but rest assured - this is the only way for you to reclaim and have your life back.  Please feel free if you want to talk - we are here for you 100% and we do understand EVERYTHING thing you're going thru right now!!

Please keep us posted on a confirmed date OK?

I have experienced the stool being in the rectum and even up higher.  I was to the point that I was having to "manually" remove ALL of my stools, which is quite painful to say the least (and embarassing)!!!

I really hope your doctors can find some kind of help for you in the very near future.  This is not healthy and is surely playing a role on your overall health.   

Today I met with the surgeon that did my colon resection three years ago. We went over how things are going (or not going LOL) and he has come up with a plan. He's going to remove everything but six inches of colon which will give me somewhat normal stools. He said that he normally hooks things back up at the sigmoid colon, but I don't have that since it was removed during the first surgery so he'll use a different approach. He's also going to have a GU doc put stents into my ureters right before he starts the surgery to help ID them. I've had a lot of open abdominal surgeries due to ovarian remnant syndrome and have a lot of scar tissue and adhesions that makes things more difficult to dig out and ID. He said that he will try and do it laparoscopically but can't guarantee it. He's going to be on a couple of vacations with the last one being the middle of July. He doesn't want to do the surgery until he's available for a long period of time to be able to follow me. So we're shooting for the end of July.

My CAT scan was last Wednesday and came back OK and my colonoscopy was this past Saturday and the results also OK.  I did have a few polyps that needed to be removed and was.  The purpose of the colonoscopy was to rule out any narrowing where they connected the small intestine to the rectum.  Other than the polyps he said eveything else looked good, that I more than likely have a "lazy" small intestine (not paralyzed as the colon was).  He told me that I could start taking MiraLAX again - it's an OTC medication now.  I took it once everyday until my appointment with the surgeon and it did help, but only if I was taking it consistantly everyday.  The best part of the MiraLAX is it has NO taste.

There are other things you could try that I find helpful if taken regularly too....Mott's 100% apple juice with no sugar added OR Welsch's grape juice.  Another thing that really moves things...sugar free chocolate (I'm sure any sugar free candy will do).  I do take stool softeners everyday and that will not hurt you to do so.  I also supplement my diet with magnesium capsules.

I hope this information is helpful to you.  I was just like you when things changed sort of all the sudden.  Of course the first thing we're going to do is worry because we don't want to live like we did pre-op. 

Also, I remember the surgeon telling me that over time, once the small intestine gets used to the roll of the colon - reduced bowel movements were a possibility. 

He did say that I have very little colon that could still be removed, however, that would be a last ditch decison and that trying all other options first is the way to go.  So, I'm going to start incorporating the MiraLAX everyday to see how that goes (plus all the other little tips that have been helpful so far).

It will be 6 weeks since my surgery this Friday.  I just got out of the hospital after being in there since Sunday.  The surgeon (that's who I called) admitted me for a partial bowel obstruction.  I had severe cramping pain in the center of my abd. around my belly button and no bm's. 

They did abd. xrays and labs 3 days in a row.  The radiologist read my first 2 as my left "large" intestine being dialated and distended!  The doc got a laugh about that but said my left side of my small intestine was severly dialated and distended and probably partially blocked.

I had iv fluids until today and then full liquids/soft stuff today.  She let me come home because I told her I would go back if things worstened. 

 I still have some pain in my intestines but at least I'm passing liquidy stools. She didn't know what caused it but said I could have had a stomach bug that shut my intestines down.  I'm dissapointed she didn't call my GI doc and at least send a stool culture off.  I hope I'll be well soon, this is rediculous.  I'm very weak and woozy.

ADVISESEEKER - I was told that once the small intestine finally realizes its roll (it takes anywhere from a year to a year and a half for our bodies to heal and get used to it's new way of transit) the amount of bowel movements CAN decrease compared to right after surgery.  This may be a question to ask the surgeon for your own personal peace of mind. 

I think (as I'm sure others have too) that we get extremely paranoid over the smallest of things....we just don't want to go back to our old non-existent lifestyle. 

about the risk of infection...during any procedure there's a risk for ANYTHING.  From my own personal experience, antibiotics were given from the very beginning until I was released from the hospital (it's possible I was given some after I left the hospital but it been so long that I can't remember).

IRISH_MOM - The MiraLAX really didn't work for me pre-op either and I was taking it three times a day on top of the Zelnorm, Amitiza, and something else that I can't remember the name of.

I think you will find the Mott's apple juice a good choice.  Sugar free candy is another real boost!!

SHELLYPOO - Oh my goodness - my heart goes out to you.  If it makes you feel any better, I too caught a stomach bug in the early post-op stage and my entire abdomen region had a lot of cramping, pain, tenderness, and discomfort.  My stomach was also distended.  I did have bowel movements but very few at that time.  Once the "bug" was over I went back to my normal routine.  I think it was somewhere in the range of two or three weeks post-op, I was readmitted in the hospital for three days, had two CAT scans (which didn't show anything) and they took a look at where they connected the small intestine to the rectum for a possible blood supply problem - all came back OK.

It's hard to accept these setbacks, but they are possible, as we all can see.  I have no doubt that you will regain your strength and begin feeling better very soon.  I do wish you the best of luck - keep us posted OK and try not to get too discouraged (easier said than done I know). 

NONNA - You're more than welcome!!  The MiraLAX pre-op did cause my stomach to swell, however, I was taking the stuff three times a day then.  I have noticed that taking it once a day isn't too bad - I can't say I'm happy with the bloating but at least I can pass some gas now which helps a lot.

It sounds like you and I have a very similar situation and I also fear the small intestine being "lazy" as I was told Saturday - I too was readmitted after surgery for three days, had a host of tests ran, and was released with no definitive cause for my pain and discomfort and given stronger pain medications.  Thankfully my hospital stay wasn't anywhere close to your experience.

I was also under the impression that I'd never have to have another colonoscopy and the prep WASN'T the Fleet phosa soda thank God!!  It was that "gallon" of salty stuff that had to be chugged down by the glass full every ten minutes until gone (the surgeon thought it would only take half the bottle for me - but seeing I'm unusual - it took the whole darn thing).

I did have my entire colon removed and guess it was all except for the rectur.  I do not cramp, just a little full and bloated look/feeling which can cause me to hurt (tender) a little.  The very same goes for me, that up until about a month and a half ago there was a definite feeling when I needed to have a BM but now it is somewhat supressed.  I too began obsessing over it because things moved plenty and wonderfully.  Now I really feel blessed with each and every BM I thank GOD for each one!  Once or twice a day is far better than before, but three times a day was perfect.

I'm not sure if the small intestine can become paralyzed or even removed, but my surgeon did tell me that if my syptoms do not improve or they worsen, then and only then would he take out the remainder of the colon (he didn't mention anything about having to remove any part of the small intestine).

I've been on Protonx since before my surgery due to an ulcer, but now it's basically for preventitive measures. 

I know how easy it is for ALL of us to fret and worry over the smallest of things.  We're human and that's only normal.  Also, for those who've been thru so much - just the thought of something going wrong increases our anxiety.  I hope I was able to address your questions and the best piece of advise I can give you is to call and ask/express your fears with your surgeon.

JULIA506 - I'm happy to hear you're doing as much homework as possible.  I'm not real sure, and forgive me if I'm wrong, but I think there is a difference in the purpose/reasons for having a colectomy for Colonic Inertia (paralyzed colon) vs Crohn's Disease.

Maybe there is someone here who is more familiar with this and I wish you the best of luck in whatever decision is made in your best interest.

OK - forgive me if I've made any typo's - my hands have trouble typing for any extended period of time!!!!   

At least when I eat or drink certain things (prunes, apple and grape juice, sugar free candy) they do aid in the moving process. 

The most important thing that I have to keep reminding myself.....I'm blessed and thankful for the TC and would do it all over again!!!  I know that because I have an obsessive personality - I stress over the smallest of things, especially with the TC.  I think what I'm experiencing now is totally normal - that my small intestine is finally taking on its responsibility, doing what the colon used to do. 

Thanks again for the small intestine info!!!