TOTAL COLECTOMY PART 19

Indersonu

Actually, as soon as I was diagnosed with the breast cancer, the first thing they did was take me off of the hormones. I had a hysterectomy at 33 and was placed on Estrace at that point. So four years after starting the hormones is when I was diagnosed with the breast cancer. Breast cancer feeds off estrogen. I went on calcium with vitamin D to try and save my bones, but was diagnosed with osteoporosis in 2003, so I'm now taking Fossamax for that.

Hi Krista,

That is great news. I'm sure she's nervous, but she'll feel so much better afterwards.

BOOKA/KRISTA - I'm happy to hear they've moved your daughter's surgery up.  Poor little sweetie - she has to be miserable!!!  I do pray that all goes well with all the pre-op things she has to go thru.  Keep your faith and know God will see you all thru this.  Please keep us up to date and posted on things. 

Hope everyone else is doing well !!

Indersonu

Wow, you've dealt with quite a bit yourself. By your post it sounds like you're at least five years out from your diagnosis which is great. I'm assuming that you're in Canada since you mentioned Marvelon. I've had DVT twice due to BCP's and once just because of surgical complications. Since I've had the DVT's, I can't take Evista. I haven't had any problems with the Fossamax at this point. I can totally understand about the difficulties with the BM stuff - I just want to be 'normal' too. Have you tried Lactulose? It didn't work for me before the surgery, but it does work now. I have to take more than the normal dose, but at least it gives me some relief.

Resa

You poor thing. I really don't know what to say...'I'm sorry' doesn't seem like enough. How are you feeling now? Please at least drink a lot of fluids even if you don't feel like eating. The fasting might give things a chance to settle down. Did they ER give you any ideas as to what is causing this? Out of curiosity, do you still have your gallbladder?

Resa

I'm happy to hear that you're feeling a little better. The main thing is not to get dehydrated. The reason I asked about your gallbladder is that the 'attacks' you're having sound a lot like gallbladder problems. Does the pain radiate to your back or chest at all? My main clue was that it was fatty foods that was causing the problems, and that's exactly what a bad gallbladder will do. It's just a thought.

I got the results of my defecography back, but don't know what they mean. It does show that there are some issues, so I'm waiting for somebody from the GI's office to call and let me know what the next step is.

Sub-Total,
I had my sub-total on May 16. I didn't ask, but my financee did ask about intmacy. The Dr. told us about 6 weeks. That was probably the earliest. I don't know if you are going to have your surgery open or lap. That might make a difference. I had an open surgery. I can't answer your question about the pill. Sorry.
stormy

Hi all,

How's everyone getting on? I come back here again. I just back from Singapore yesterday. I have consulted with a doctor there at last. Quite tired as i have traveled back and forth between Malaysia and Singapore for 10 hours++ by bus.


My doctor said I'm too young to go for total colectomy. Not worth, as the operation still will bring some side effects. He looked at my recent medical report, e.g.small bowel x ray, gastroscopy, colonoscopy, blood test; he said it is still not enough to prove that my colon is totally dead. There is one more testing that i might need to go through, that is for checking the rectum.

This doctor is friendly, and he likes to talk a lot. He has spent almost an hour to tell me that intake too much fibre food will not improve our digestive system, however it will make our colon clogged.


I'm a girl who likes to eat vegetables, fruit, wholemeal bread and cereal. Every morning i take cereal/ cornflakes with milk/ honey. I always prepare sandwiches (tuna or egg with ham) or salad for my lunch box. At night only i take a small amount of rice or noodles with plenty of water boiled vegetables, small amount of meats. Everyday i take at least 2 oranges as orange is full of fibre source especially the skin of the fruit. As what i know, high fibre food keeps our digestive system healthy. I don't like oily food because it always makes my stomach feels uncomfortable, and bloating, hard to digest. Doctor said we should take some oily food to help our digestive system. I got his meaning. We must have a healthy diet balance, variety and moderation. Healthy eating requires a balanced intake of nutrients.

Now i felt very confused. Different doctors tell me different things. Previous doctor told me that i must intake a lot of high fibre food to help my digestive system. Now this doctor explained to me that intake too much high fibre food will slow down your digestive system, it will cause your colon get stucked. According to my last colonoscopy checking, there was a part of my colon was blocked by some pieces of cabbage that i took for 2 weeks ago. It seems that cabbage could not digest properly.

Do anyone of you face same problem with me? Do you feel your stomach, intestine, colon get stucked after you have taken a lot of high fibre food like fruit, nuts, seeds, vegetables, cereal? Do your doctor said that you can't take high fibre food?

I've heard some patients mentioned before they cant take high fibre food. But i never ask why. I thought it only happens after have total colectomy...

I'm quite nervous and down everytime see doctor. Because different doctor has different opinions and i always lost my way, i don't know whom should i listen to... This is the 5th doctor that i have consulted in THIS YEAR. The unbearable painful is so torturing and i always lost control crying bitterly.

Now, i was asked to stop taking any vegetables for 2 weeks, together i will take another new medicine called MOVICOL, for relief of constipation. After 2 weeks then only i can take some vegetables and see what would happen. Doctor wants me to see the difference between these 2 weeks. I cant imagine a day without vegetables - my favourite food. Luckily it is just temporarily.

Phyllis B, sorry for late reply. How are you now? I have asked the pharmacist about Lactulose and Zelnorm. Zelnorm is not available in my country, same as MiraLAX; Luckily Lactulose is available. But it is called Duphalac Syrup Lactulose here, I dont know whether they are same. I have been taking Dulphalac Syrup since 3 weeks ago after i consulted with 4th doctor. I dont like Dulphalac Syrup although it tastes sweet. I always feel my heart beat increases after taking it, i dont know is it called hyperactive? Sometimes i will have insomnia after taking it. this is similar to the new medicine that i am now taking, MOVICOL. Do you face same syndrome as me?

Oh ya, as what i mentioned previously, i have been taking Dulcolax everyday since 11 years ago. Recently doctor found out my large colon is 30 centimeter longer than normal people. He said it is one of the side effects of taking dulcolax. High Fibre food stucked in my colon, and i non stop intake more high fibre food, as a result it will expand my large colon. >.<" Sigh... i don't mind if large colon is longer, but if it does not function well, it will only increase burden to me. :( of course intake too much laxative medicine like dulcolax will make my colon more lazy and loss of functions, and even loss of water.


worried + confused girl,
mimi

Hi Mimi

You poor thing - How are you getting on with Movical?? That is what is prescribed here in the UK for constipation, as well as lactulose, which you are also taking.  However, do be careful as for those with slow transit constipation,it can give terrible terrible pain, because it increases gas in the gut.  As for me, that is what happened and it just didnt help.

Have you tried Senna?  You can always buy it on-line.  It is a very well known STIMULANT laxative, whereas the others are less of a stimulant and more of making the bowel retain water, and so thereby bulk up the stool causing the bowel to contract.  I know some people on here use it and it works for them, but if your bowel is so lazy then nothing in the world is going to make it contract unless you use senna.  please try it. You will need a large dose - so dont follow what is said on the packet - thats for 'normal' people.  Just work it out for yourself.

Furthermore, i URGE you to take (if you havent already) a sitz marker test (what they call it in USA), or transit study test (what they call it in UK).  and also an MRI scan. 

 

The transit study will show without a doubt whether you have slow transit constipation and whether your colon is in fact lazy.  The MRI scan shows up EVERYTHING. 

I know of a lady who had every test going, and they still couldnt find out why she had pain.  i urged to have an MRI scan, and they found large cysts on her ovaries (which didnt show up on any other test).  PLEASE DO IT. 

I am not good at geography, but even if you have to travel to USA to have it done, then i hope you can.  Dont get fobbed off by doctors saying you are too young (how old are you??).  What are they saying?  That only after you have lived another 20 years in agony and no quality of life are you a candidate??  Makes me so angry. 

Yes its good to look at the whole GI tract - rectum also.  As having bowel problems can ultimately affect the rectum too sometimes - as it did me - what with straining and all..  You definately sound like you have a very lazy bowel - and if diet and laxatives dont help, and you only go to the loo once a month - i know you are a definite candidate.  Over in the UK they are very slow giving you all the tests - especially the transit study one - i only found out i had slow bowel two years ago after 10 years of trouble. 

As for fibre, again if it dont work for you, then dont have it.  Generally if your bowel is inert, then fibre will have no effect on it other than give you pain and wind, as the food dont move fast enough because the bowel doesnt contract.  I have found that to be the case.  Also any raw fruit and veg would also have the same effect - you should try excluding raw food - just eat well cooked veg (when the doctor says you are allowed) and then no highly fibrous veg like cabbage!! no fruit at all!!  in other words you have go against everything that is so called 'good for you'.  Eat bland easy to digest foods - anything to help your gut - dont give it extra work to do - treat it like you would a babies gut.  Do you not find you are uncomfortable after eating raw stuff?

I have done all the above, but it helps a little. i do notice a difference when i eat the fibre and raw stuff as the gas cant move out, and my gut looks like its going to explode, and i feel sick.

Sorry this is so long...I hope i have been of some help to you, and do let us know of your progress/whether the medication is helping or not...

all the best

karenx

for those of you who have had a sub total or tc, how do you know if your anastomosis is narrowing?  What are the symptoms?

Hi All...Hope all is well w/ everyone...well takera is the hospital and we had her final colonoscopy today...They wanted to make sure her stricture was still the same,and I quess make sure that we wanted to go ahead w/ the s/x...I was feeling really well about everything...she is going to have a TC,but they are going to remove only a little bit of rectum,and leave the rest and hook up small intestine to rest of rectum.She does not have UC or Crohns...She has Colonic Inertia or no motility problems...actually no motility at all...I know they can,t predict outcomes...different for everyone...but her docs want me to try this s/x,and see if it works...they are not to sure if she will continue not going or go to much, which they say is way easier to controll then not going at all...I saw a different attending today ...you know how they all make rounds and he asked me why we weren't going to do the TC w/ a bag? In his opinion.why take the risk of a whole different set of issues,side affects etc...that having a bag would be life changing for her...so I had a meeting w/ her GI and surgeon..which we have been w/ since 2003 and who finally helped me and gave her a d/x,and actually knew she had a real medical problem...not just constipation...they fell we need to go ahead as planned and see if it works...give her a chance at quality of life this way,and then if this doesn't work go back and give her a bag...I quess I'm having a case of "What Ifs..."I know there are people on this site that have had both options done for the same problem as Takera...either a TC w/out a bag...or a TC w/ a bag...I just want the best for Takera...the best qulity of life...she is only 11...I mean if it were me I would take the chance of no bag first...to see if it would work,even at the risk of more side affects,and more s/x...she just keeps telling me she wants to be a kid,and if that means having a bag thats ok...the docs don't think she really understands what it all means and that when she hits 13 or older she will hate the bag...I hate this...I just want the best for her..not what seems best to me..any advice or encouraging words would be great!!! Talk to everyone soon!!

Krista (Booka)

hey guys.....its been a while, but not much has changed on this end. I still pull my hair out in gobs and its evrywhere in the bathroom and in my car :( I have still been using miralax about every other day and milk of mag once in a great while....I have been very stressed and I think that has a lot to do with my need for any type of laxative. Since my surgery things have been falling a part at my job (peds heme/oncology RN) with everyone. I actually just accepted a job MOnday night and am leaving this morning to tell my manager I have accepted......SO NERVOUS. we have lost now five fulltime nurses and there are three in the works, one for sure. This is a  horrible thing for our floor and for our patients. I am so very sad to leave the wonderful people I work with and most importantly the kids I love and who are a huge part of my heart. I will now be working at a brand new facility giving chemotherapy/blood products, etc (oncology infusion clinic). I will only work four days a week and no weekends, no holidays :) I will be making more and the benefits, retirement package are amazing......overall I will be a lot happier.

I have my four month post-op check today with my surgeon. I am so excited to see him and his staff. I am going to bring them one of those edible arrangements......its the least I can do for getting my life back. My only complaint will be my hair and the pain at my incision.....its awful. I can hardly touch it.

Hope all of the rest of you are well.....miss talking to alot of you. MOM- hope you are feeling well.....you must be. Apri- PLEASE tell someone about your thoughts of suicide......call someone please and let them know. It is not worth it honey.....thing will always be or can get better than that solution.I am so sorry for your pain and please let us know  how you are doing.

Booka- I had a TC four months ago for colonic inertia. I was 27, now 28. I had no bag and they directly connected to my rectum. I did have a rough 3 months, I had complications, but now I am feeling great:) I have my life and body back. I have some scars, but they are worth how I feel. I do take Miralax about four times a week, but one scoop and it WORKS! Before surgery I could have taken the whole bottle and it would have done nothing. I believe as you read above this is probably stress related. Keep us updated and let us know how she is doing. Send her my prayers from MI.......she will do great.