Total Colectomy... Part 12

Thanks Michelle. I will also post to the MS site. I can't believe how many similarities there are between Fibro and MS. But two of the biggies that I have gooing on are the colonic inertia and the vision problems (one eye won't track with the other) and migraines. I realize now that was what put up the red flag to my doc in Portland. I had thought I was having those problems because I was so toxic from not going very often.

Here is a site with all the possible tests that they might have you do for colonic dismotility (colonic inertia). It is a good site as they have lots of information. Try to get as much information on this as you can so when you see the doctor you can understand what they are talking about. Are there any colorectal surgeons in your area? If you can, go to one of them rather than a gastroenterologist. Then you won't be running from doc to doc. I'm sending a site for colorectal docs also, okay? Hope this helps. 

Take care and have a nice evening, Helena

http://www.medicinenet.com/constipation/page3.htm

http://www.fascrs.org/displaycommon.cfm?an=1&subarticlenbr=104

Probably the best indicator is the Sitz marker test. It was the first test the colorectal doc did to check to see how fast things were moving through my intestines. It is a simple test where you just swallow a capsule with 24 very small o-rings that show up on the xrays. You continue to eat and do everything you would normally do for the next 5 days. Then on the 5th and 7th day they do xrays. Normal people do not have any markers left by the 5th day. If you have colonic inertia the o-rings are scattered throughout the intestinal tract or all bunched up where you might be obstructed. They might want to do a colonoscopy for the next test but I had already had that one done.

The next test the colorectal doc did was a defecography. It will replace the need for a barium xray as this is a more 'elaborate' xray. It will check to see if your pelvic floor is working properly. It is not a very nice xray (uncomfortable in the way of humiliating) but it is necessary.

The other test I had done by the gastroenterologist was a gastric emptying study to check how fast your stomach is emptying into your small intestine.  I never did have any manometry tests done by the docs but I know some of the others on this site have.

Go to the colorectal doctor first because they can do all the tests, even the ones that the gastroenterologists order. Then you won't be jumping from doctor to doctor like I did and having to transfer records and xrays. I found out after the fact that the colorectal doc could have done the colonoscopy and the gastric emptying test and the blood work to check for hypothyroidism and hypercalcemia. I should have gone to him first but I didn't know.

Hope this helps...I know how you feel because I'm sure you've done your fair share of docs too. Let me know if I can help with any other information, okay? The people on this site are great. They will answer all the questions you have and will even be there to calm your nerves

Hi enpointe, I went back and read a couple of your posts. I'm glad to hear that you are doing well after your surgery and that you would do it again because it is giving your life back. I'm 52 and my surgery date is scheduled for Jan 22. I need to lose at least 30-40 pounds but as you know it is very hard when nothing is coming out at the other end. I don't have much of an appetite because I always have that full feeling. I'm not exercising right now because I'm just too uncomfortable and it thrills me that you are walking 45-60 mins a day and are losing weight. I'm looking forward to that along with having my body function again. I know what you mean about the pain meds. I have been on and off vicodin for the past 5 years and it can push you over the top at times. The pain meds shut down your CNS (central nervous system) and it seems your brain goes into overdrive emotionally and mentally to protect your body. So I'm either over reacting to things around me or completely shutting down (zombie effect). For the most part the vicodin has been a blessing because it has helped me to sleep at night and has silenced the pain. I know it causes constipation but I had these issues before I ever started on the vicodin. I see a naturopathic doc also and she told me that my liver was toxed out from being so constipated all the time and from taking the vicodin. Do you think that it was your liver or possibly another organ detoxing since it now had somewhere to go? Did you feel better after getting rid of all that bile and gunk? How long were you in the hospital? They told me 7-10 days. I have had a previous ab surgery and the doc was concerned that they might have to remove adhesions also. Did you have a previous ab surgery prior to this? Thanks gogently

Hi gogently, thanks for talking with me. I felt better after the ng tube was removed because I could not talk without feeling like gagging. The bile in me did not make me feel anything. I have been having alot of exhaustion which they said would happen and take a nap each afternoon. Some days I don't even get out of my pajamas. I had my gallbladder removed lap and the doctor did not say anything about it. I really need to find out what happened to cause all the vomiting of the bile. I didnt say before but I felt like there was a point I was going to die. I asked the nurse and she just stared at me and did not respond. That freaked me out. She said I obstructed. When I woke up the next day in the eary am with the doctor present, I told him thank you for saving my life and he said God saved my life. That was very humble yet very scary also. I feel I have a whole new life and am taking each day differently and remembering to thank God for it since I could of not have been here anymore. I still cannot do alot of things and my doctor did not want me to either. I will do the big household chores after he clears me. I did do too much though a couple of times and it was not good. I felt really uncomfortable and a little scared and did not do that again. It is a long recovery for me I think because I also have fibromyalgia which causes such tiredness. I have diabetes and hypothyroidism which causes tiredness at times and all of my medications cause drowsiness so I cannot believe I am awake at all!!! Thanks for contacting me. I hope that you will be feeling much better and want to talk to you for support after the surgery if you want. I understand being so full and bloated and distended. I really cannot believe that is not happening to me anymore. I cannot eat much it seems because I am full very soon. That is good because I still have alot of weight to lose and truly believe it was due not going to the bathroom much. I am going about 7 times per day. Take good care of yourself. I wish I did not use the word enpointe, it sounds so stupid and just have not changed it.

Is there a way someone could suggest healthy soft foods that has worked for them! Also is there a big possiblity that I will throw up bile! Will my stomach and uppers legs be swollen? Is the pain the first few days unbearable! Thank you for any comments and prayers! Lam

Lam,
When is your surgery? Mine is the 22nd. I can't really answer any of your questions because I'm looking for the same answers. I don't think the swelling and the bile are the norm. I do know that they keep you very comfortable with pain medications after surgery and for the first week in the hospital so I wouldn't be concerned with that. I will keep you in prayer, okay?

gogently

Enpointe - sorry to hear you had complications after your surgery. I hope you are feeling better with each day.
Gogently - hope your surgery on Jan. 22 goes well for you.
I hope every one else is doing well also.
I also hope that everyone had an enjoyable Christmas and New Years day. My Christmas weekend I was home sick with Strep Throat.
In June of this year I noticed that my right side of my tummy right above my waistline has become swollen. It looks like the size of a baseball protruding out. It doesn't hurt -- it just makes me look lopsided. I have this bulge sticking out. I mentioned it to my surgeon on my last appointment with him but he didn't seem concerned. I hope after my surgery my energy returns. I feel like a walking zombie all the time. I can't sleep through the night. I have been up since 1:00 a.m. this morning. Glad today is my Friday off from work.

It is a good thing that my surgeon is in Africa doing his medical service but I wish he were here so we could schedule my surgery. Patience is not me - I lack patience. I should be scheduled for mid-February or March but this waiting is making me anxious.
I will stop my rambling. Hope everyone is doing okay.

Hi gogently, thank you for all of your support. Today is one of those days that I don't feel like doing anything. I am doing laundry though. I hope you have a good day and I'll get back to you really soon. It is so good to talk to someone who understands of this because it is just not the same to try to talk with others. thanks again, enpointe

Hi Gogently! My surgery is next Thursday Jan 11th! We can learn together! How long do you think we will be in the hospital! I so afraid and I need to keep praying this is the right decision! I'll pray for you! I did not get my small intestine tested! Did you and is that a bad thing? I have a awesome surgeon! I have trust that he knows what he is doing! Lets tlk later lam

Hi lam

Everyone is very individuailized as to what veggies and fruits you can tolerate.  For me, I can not eat salads without getting a belly ache.  I eat cooked/steamed vegetables such as broccoli, cauliflower string beans, peppers, onions, peas, tomatoes, zuccini however, they are expelled either totally or partially undigested and I have to be careful not to overdo.  It is basically by trial..if it agrees with you fine if it doesn't avoid it for awhile.  You bascially do not have to eat salad for ruf***e anymore.  I was told not to have soda that it would cause bloating but that didn't effect me.

  As far as BMs some people on the forum go normally 2x a day....some have watery diahrrea.  My case I am going about 10 x a day...definitely within 1/2 hour after eating...it is sometimes formed and sometimes diahrrea.  It is about 6 months since my surgery and I am waiting for nature to slow things down.  I was told to take bran capsules and that helps bulk and reduces diahrrea.  Immodium did not agree with me.  I am retired so the bathroom is not a big issue...I rather have it this way then the way I was preop.

When is your surgery scheduled...You should start to write a list of things to ask the surgeon...

Also, don't forget to stock your home with essentials before your operation such as jellos, fruit juices, lemonade, pasta, chicken, soup and most important soft toilet paper.  You may also want to get calmaseptine in case you get butt burn after you start going.

Phyllis

Thanks Phyllis for all the great advice. I have started my list of questions for the doc but maybe you can answer some of them...how is bladder control after the surgery? and the sex life? Do they stay about the same? Does the incision weaken the abdominal muscles for awhile? I've had ab surgery before but the cut was from hip to hip and now this will be up and down. Are you able to do any core exercises yet and do they recommend doing them? Was any type of physical therapy recommended afterwards or are you pretty much on your own to heal with time?
gogently

Hi lam, I never had any small intestinal studies done although they did do a gastric emptying study to see if my stomach was emptying the contents at a decent rate and it was, thank goodness. I was told 7-10 days in the hospital because my doc thought that I might have possible scar adhesions from my previous ab surgery and wants to take care of those also. I will also be having my ovaries removed. I had a vaginal hysterectomy 19 years ago and it was my idea to get the ovaries taken out because I couldn't bear the thought of having another ab surgery to take care of that if they start acting up. So my stay might be a little longer than most. I've read posts where the stay sometimes is as short as 4 days! But I think that was with a laparoscopic surgery.

Tracy and lam, I just want to encourage you both to hang in there. I know I'm getting the pre jitters also but I figured 'drastic times take drastic measures'. I have been so sick over the past 3 years that anything has got to be an improvement. I'm sure you feel like I do...so tired of being bloated, foggy headed, and not having much of a social life because you just don't have the energy. So these are changes to look forward to...getting your life back and being 'norm' again. And losing the weight...what a nice perk! Lets be there for each other this month, okay? lam, when is your pre-op or have you already done it? Tracy when is yours? Mine is the 15th.

gogently

I didn't write that clearly.  I go 10/day.  of that 10, I go 1/2hour after  eat..Not 10 times after I eat.  Is that clearer?  I am in touch with Dr Geisler at Cleveland Clinic via email.  It would be a hardship to go out there just for him to talk to me.  I am being followed by the GI doctor who is now going to see me every 6 months and by my GP that I see every 4 months.  Basically the small intestine does adjust to absorbing the fluids that the large intestine did and this takes time to establish (so I have been told).  You know I can touch my belly and it is so soft and mushy and before surgery I was so distended I look 9 months pregnant and it was hard as a rock.  It is just so much better now