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TOTAL COLECTOMY PART 18

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Posted 1/12/2008 1:17 PM (GMT 0)
Hi Everyone,

Phyllis - I'm sorry to hear you are having bleeding problems and pain. I hope whatever it is they find it and clear it up soon. I also feel for you with migraine headaches. I know how painful they can be. I used to get hemoplegic migraine headaches when I was in my 20's and early 30's but they have been in remission since I was 33. I hope you find something to get your migraines under control also.

I'm having little things going on and I just wanted a GI to check me out. Nothing serious just little things and most likely nothing. I had my PCP send a referral to a different facility operated by the same HMO just in another city. She sent the referral but the clinic refused to see me. They sent a message back to my PCP stating I had to see a doctor at my normal facility. Yesterday afternoon I went to the Patient Relations office and spoke to them and they told me I can see any doctor I want at any facility I want. They sent a message to the Patient Relations office at this other facility recommending they set up an appointment for me. When I went to UCSF for testing the doctor there recommended this GI doctor that I want to see. There is only one GI doctor at the facility I go to and I do not like him. He doesn't listen to me. He was the one who told me that even if he sent me to the surgeon the surgeon wouldn't do the surgery for CI. We all know he was wrong on that statement. I just had to vent on this.

Extreme - have lots of fun on your vacation. Where in Mexico are you visiting?

Mom2Sophie - I meant that all my rings were in my entire colon from the Cecum to the Sig. There were even a couple in my rectum. The path report showed damage throughout every segment of the colon. The thing I find concerning is that the colonoscopy didn't show any of this damage.

Amey - I do not know if this will help you with your mobility issues but have you ever tried drinking hot water with the juice of one whole lemon in the mornings when you wake up?
Posted 1/12/2008 5:56 PM (GMT 0)

Hello All,

What is Bentyl? Does it help with consipation? That is only thing that I have not taken.

Posted 1/12/2008 10:52 PM (GMT 0)
I have Bentyl. It is not something you want to use when you are already suffering from constipation. Bentyl slows things down.
Posted 1/12/2008 11:23 PM (GMT 0)
Amey,

I see you have taken Amitiza...ugh I was on that and was always nauseated. Did it bother you?
Posted 1/13/2008 2:03 AM (GMT 0)
I have to agree with Amey, Bentyl does slow things down, it's meant to

stop the cramping.  I use reglan at times with I have a lot of cramping and

have alot of bm's.  try looking on line to get to get more information.

 

Posted 1/13/2008 4:23 AM (GMT 0)
I am really nervous about having this surgery, however I have read through TC 7 of this thread and feel like I know each and every one of you! I just read Cathy W's story about her hospital stay and the feeding tube. OMG that makes me hope that that was just a fluke thing. Can someone help me with questions to ask the surgeon?
Posted 1/13/2008 11:11 AM (GMT 0)
Hi Felicia,

You wouldn't be normal if you were not nervous.  We all were.

Questions to ask:  Does he have a history of doing this surgery.  You don't want to be on anyones learning curve.  Will it be total colectomy with ileo-rectal anastomosis.  Laparascopic vs open.

Days typically in hospital.

Things for you to know:  You are going to have several rough days.  However, they will do everything to help you. ie pain pump.  Just know the more narcotics you take, the slower your gut will recover.

Even if it hurts, you must get out of bed as soon as they say.  It will hurt but will stimultae things to get back on track.  I used the pain pump, waited a minute and then got up.  Give yourself a break and don't expect to be running 5 days after surgery.  Be a bit of a couch potato.  Keep thinking about how much things will be better within 2 - 4 weeks.  It is a small sacrifice after years of suffering.

Before surgery:  Prepare your home before surgery.  Clean, make food and freeze for other family members, stock the pantry and remember to get plenty of soft toilet paper.  Get books that you have wanted to read or magazines.

Remember you are not alone.  This board is a tremendous support system..Come back often.

Phyllis

PS:  There have been other posts here that stated their fibromyalgia symptoms improved after surgery..keep thinking of possible added benefits

Posted 1/13/2008 6:02 PM (GMT 0)
Thank you Phyllis!

I will ask all of these questions!
Posted 1/14/2008 12:21 AM (GMT 0)

Hey Everyone, how is everyone.  Just wanted to chat because my husband just doesn't understand what I'm going though. It's been a tough week I'm still sick with a bad sinus infection which know my husband is sick and  (you girls know how guy are suck babies  when they are sick) he is driving me up a wall. Any way I have diarehha on and off all week, sometimes can't get to the toliet in time. I'm gonna try to go to the chat room, does anyone go there? Let me know

Have a great night.

Posted 1/14/2008 12:30 AM (GMT 0)
FELICIA - Phyllis did a great job answering your questions.  There really isn't anything I can add - I can only agree with all she said!!!  When is your surgery?

 

Posted 1/14/2008 12:40 AM (GMT 0)
what's up Robin things doing ok

Posted 1/14/2008 12:58 AM (GMT 0)
Hi April - we must have posted at the same time a little while ago.  I'm doing so-so, some days are better than others.  I know what you mean about men and them being sick - big old babies!!!  You're also correct - they just don't understand what we go thru - not even the slightest bit!!!!

I really think I'm going to try and get in to see my GI soon.  It seems that everytime and everything I eat disagrees with me.  It seems like I'm sick to my stomach all the time anymore - which over time really makes one feel BLAH!!! 

Sorry to hear you've had a tough week and hope you get to feeling better soon.  I know all too well about sinus problems and having an infection isn't a lot of fun!!!  I also hope things "slow down" for you!!! 

Posted 1/15/2008 10:39 PM (GMT 0)

Amey:  how are doing?

Hope everyone is doing well, just wanted to say hello and I hope everyone is feeling good.

Posted 1/15/2008 10:43 PM (GMT 0)
Resa, when you say the path report showed damage...they could tell that through the Sitz Test?  I guess the word "damage" is confusing me.  Just wondering if there is a seperate test you had done that may determine if I have "damage."

So my surgery date has been set, but in the meanwhile, I was going to try some natural things.  So far, nothing has been working...surprise, surprise.  I have been talking to a dietician and today I just wanted to scream!  She says for my age range (26) I should be getting 30-35 grams of fiber.  Ok...for a 94 lb female, that is hard to do.  But you know what, I have been eating 27 grams of fiber a day on average, for the past two weeks.  I drink more than 8, 8oz glasses of water a day, and taking magnesium supplements...does that tell you anything?  I guess, I shouldn't really be mad at her, I saught her advice.  But she just acted like it was my fault that I wasn't going b/c I wasn't getting enough fiber....come on, 27 grams give or take 2/3 is A LOT more than most people get....right????

Posted 1/16/2008 2:01 PM (GMT 0)
Hi Everyone,

Mom2Sophie - I don't know. Perhaps these problems show up in everyone who has CI. The colonscopy showed nothing. That test showed all was fine. The Sitzmarker test showed all markers throughout my colon from the Cecum to the sig with a few in the rectum, a lot of stool in the bowel, stasis, and transit time.

I do not have the path report in front of me but from what I remember reading it stated there were vascular problems, thinning, thickening, and hardening of the walls of the colon, some spots were dead from lack of blood flow, etc. My colon was about 6 or 6.5 in length. about an extra foot of colon. Like I said, perhaps all CI sufferers have these problems. These last problems didn't show up on any test I had done prior to surgery. They were only seen by the pathologist.

Once you have your surgery and you feel up to it go to the hospital where they will perform your surgery and fill out a Privacy Act Statement requesting a copy of your path report and any other test they have performed on you if you want. You might have to pay for it but it is very minimal. My HMO charges .25 cents a page after page 4. From two different hospitals, I received all my reports and X-rays. The only report I did not request yet is my mamametry because it was done at UCSF.

Within the past month or so I have experienced severe rectum pain like a knife is being jabbed up my buttend. It has happened about three times and it last only a few moments. Anyone else gotten this sort of sensation?

Time for me to get ready for work. Have a great day everyone.
Posted 1/16/2008 2:31 PM (GMT 0)
MOM2SOPHIA - So glad to hear you have a surgery date - when is that?  As you've written and know by now - NOTHING is going to work unfortunately.  If I'm not mistaken - I think I've read that fiber can actually make things worse for people like us.  I don't blame you for being upset - these "medical" people who do not understand our condition with constipation (CI) have NO IDEA whatsoever.  When they don't have answers "MORE FIBER" and "MORE WATER" is all they can come up with.  It is very frustrating to us who've been there and those going thru this and my heart goes out to you!! 

I know Resa is the only one who can go into more detail regarding her path report regarding "damage" - however - it could be that there was actually more damage (dead) colon than expected (once they could visually see it).  The Sitz test only "shows" how slow the rings move.

During my colonoscopy is was noted that I had a "loopy" colon, however, until they got in there they had no idea how "loopy" and "large" my colon was.  My surgery was done laparoscopic and it took them eight and a half hours to remove.  My surgeon has done hundreds of TC's and he told me that it has NEVER taken him that long to do this surgery (he removed five and a half feet of colon).  Wouldn't you know it that I'd have to be a "first" (I seem to be good a breaking records LOL).

I hope this helps is some way.  My thoughts are with you and I do know what you are going thru.

Posted 1/16/2008 2:40 PM (GMT 0)
RESA - Sorry to hear your having some discomfort - maybe you have internal hemorrhoids, I do unfortunately.  This is just a thought.  If I were you I would call the surgeon's office and ask them if this could be a possibility - if not - maybe they will want to see you.

Other than that, how have you been feeling?

Posted 1/17/2008 1:41 AM (GMT 0)
Surgery is March 27th and I can't wait.  Well, I guess the only good thing about my eating more fiber is that I am eating healthier...that is for sure.  I eat only fruits, veggies, whole grain stuff and of course, lots of water.  I don't eat ANYTHING that is supposed to be constipating.  If a normal person ate like me, they would crapting 2/3 times a day, lol.
Posted 1/17/2008 1:57 AM (GMT 0)
April,

I am doing well. I am struggling to find foods that do not get blocked in my ileostomy. For now, I can eat boiled egg (whites only), chicken, fish, and yogurt. Every thing else I have tried gets stuck...apples, oranges, peaches, pears, lettuce, carrots (cooked ofcourse), potatoes, pasta, nuts, cereal...and others I just cann't think of right now.

How about you? How is work? Are you still having the serious gas? Are you still feeling sick with your whole sinus problems?

Thanks for asking about me April. I am doing ok. My diet may be boring but at least it is very healthy. I am still running, biking, and working at the gym. I am in training for a 180 mile bike race. Last year this race put me in the hospital 3 times so I am nervous that I may not be able to do it this year. But I am determined. Last year, I did really well on my time and I was extremely proud of myself. I loved the feeling of accomplishment...it is an addiction!
Posted 1/18/2008 11:26 AM (GMT 0)
Hi Everyone,

Off the subject but Phyllis you said you were getting migraine headaches from medicine they gave you. Was it oral or cream that brought them on. Like I said before I hadn't had one in 25 years. Well my luck ran out. I had one the other day. The pain and the throwing up, uck. Luckily, it wasn't a hemiplegic one, but it still messed up my thinking capabilities. I do not have the slightest clue what might have brought it on. I have thought and thought but I haven't done anything different this past week that I haven't been doing in the past 25 years.

How is everyoe else doing. I hope fine.
Posted 1/18/2008 12:13 PM (GMT 0)

Hi Resa,

The medicine I was taking was Rowasa.  I tried both suspension enema and suppositories for proctitis and ulcers in the blind loop near anastomosis.  The headaches I got were wicked.  Once I stopped meds, no more headaches.  GI is trying different med..oral.. that is given for colitis.

Posted 1/22/2008 7:15 PM (GMT 0)

Hey all.....back from Mazatlan,MX. The weather was great and it was truly refreshing. We flew in yesterday to snow, snow, and more snow. I did not end up drinking in MX....I had forgot my second bottle of Milk of Mag and had to buy some there...leche de magnesia...wow it was horendous. I was vomiting every hour....but I had to take something. I had my pre-surgery labs drawn yesterday. I am pre-registered, but just do not have a time. Surgery is Monday...thats all i know so far.

I am getting increasingly nervous. I am worried about recovery. My work has me off for eight weeks so far? Is this enough usually? I am worried about further gain??? It seems some of you did not lose and I cannot get rid of this 10 I have gained through all of this. I hope surgery helps with this. I start my prep Thursday...not excited about 4 days of clear liquids while working and taking laxatives. Hope all of you are well. Wish me luck and say some prayers. Very scared.

Posted 1/22/2008 8:37 PM (GMT 0)
Xtreme,

It is normal to feel anxious and concerned prior to your surgery. As far as your time off work, I personally think 8 weeks is more than enough time; however, your body may react differently than mine so it is hard to say. The same thing goes with weight, some gain and others may lose or stay the same, it just depends. I am sorry you have to start your clear liquids. This is never a fun experience. I ate lots of popcycles, jello, jolly rancher hard candies, and itallian ice.
Posted 1/23/2008 7:15 AM (GMT 0)

Hi all,

I'm still out here in cyberspaceland. I hope this finds everybody doing well. I'm still having 'issues', so I'll be seeing a doctor at Stanford University on the 31st. His name is Dr. Triadafilopoulos (try saying that three times fast), and he specializes in motility disorders. The lactulose is still helping, but it looks like I'd have to be on it forever and my doctor (also my boss) wants to see if there is something else going on or another alternative that would help. Some people go on colchicine (gout drug) because a side effect of it is diarrhea, so that's something else we'll run by him.

Posted 1/23/2008 11:54 PM (GMT 0)
So I have my date of the consult with the Judith Trudel on the 13th! Wish me luck....
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