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Total colectomy Part 15

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Posted 7/31/2007 7:25 PM (GMT 0)
Stephanie, Do you still take Reglan? Do you experience any side effects? I tried the medication and it made me feel dizzy and loopy. I laid on the couch for hours like I was on some type of illegal drug...it made me feel wierd.

Michelle, I am so sorry that you are having so many challenges. I seriously pray that this trial will end soon and you will find some relief.

To all of you pre-surgery members, I wish you the best of luck. I hope you all have success stories that you can share with us in the upcoming months.

Take care,
Amey
Posted 7/31/2007 7:29 PM (GMT 0)
Hi AJ,

Welcome to the forum.  Please go back and read all the parts of this forum 1-15 and there is a wealth of information there.  You would not be normal if you were not apprehensive.  This is a big surgery.  But each and every one of us who came to the decision to have surgery, had no alternative.  Once the meds stop working you become even more toxic then before and can also lead to other complications, ie impactions and possibly even perforation....It is a big decision and what you have to do is be informed as much as possible and pick a surgeon who is very experienced in colon inertia. 

I have been constipated most of my life and the medicines no longer worked and resorted to multiple enemas daily to try to move something.  I was hospitalized for a pseudoimpaction.  You will read in some of the posts that post op some people only go 2 or 3 times a day and others go more.  You can always try bran or even immodium to regulate the bowel movements.

Any questions you may have...we are all here for you...ask away.

Take care

Phyllis

Posted 7/31/2007 11:36 PM (GMT 0)
:-)  STEPHANIE - Welcome back and thank you for your post!!  I'm so pleased that you shared your experience with us and that things turned out very well for you!!  I just might have to ask my doctor for some Reglan.  I'm now down to 1 or 2 bm's every other day.  I still consider my surgery a success - at first, when my bowel habits changed, I started to "freak" because I wasn't going as often as immediately post-op and for the first 5 or 6 months post-op (5 or 6 times a day).  I'm now taking MiraLAX "again" everyday along with some stool softeners and magnesium.  I'm still a success story as the surgeon did tell me that once the small intestine "takes over" for the colon - the possibility of fewer bm's is very common.  I'll take 1 or 2 bm's every other day compared to NONE or 1 a month with a TON of medication that eventually quit working!!!  "I AM NORMAL" for the first time in my 44 years of life!!!!

I also noticed that my bowel movements and gas smell HORRIBLE and I still won't use a public restroom.  I also got to the point of being able to go out far an extended period of time without fearing "a trip to the restroom" - I think it was around the 3 month post-op period.  I'm right now near the 9 month post-op point and feel blessed and thankful for all I went thru and would go thru every bit of it again to be where I am now!!!  The only down side of the MiraLAX is "uncertain or untimely" bm's - so when I plan on a weekend away from home I stop taking it and then it takes a few days to get back on track.  The Reglan seems like a much better "form" of keeping things moving along, so I do plan on talking to the doctor about it - THANKS for sharing that with me!!!

I initially lost 30 pounds within the first three week post-op and to date have gained 15 pounds back.  There really isn't much I'm not able to eat, so I'm so thankful for that.  I'm thinking that this weight gain is partially contributed to the MiraLAX.

AJ - Welcome!!  Phyllis gave you the best possible advise - go back thru all the threads.  It is very time consuming, however, there's a WEALTH of information to gain.  I feel that the best thing you can do for yourself is to education yourself.  I spent hours upon hours, weeks upon weeks, educating myself.

As Phyllis pointed out - you wouldn't be normal if you didn't have concerns.  This is a HUGE surgery and there's nothing easy about it - NOTHING!!!  We can only give you our own personal testimony.  Each person is different and how we handle things are different.  The majority of those who've had this surgery would do it again without hesitation - me being one of them.  I actually had no other choice than to have the surgery - NOTHING was working so my decision came very easily for me.  

Please feel free to ask questions - that's what we're here for.  These are the sweetest and most helpful and compassionate people I've ever met in my life and I feel so blessed that I have made the most wonderful friends here!!!!

Posted 8/1/2007 1:56 PM (GMT 0)
Thanks Phyllis and Robin- I went back through after I posted and read, there really is a plethra of helpful information. My apprehension is slowly moving to apprehension/excitement. I am going to be so relieved to have this finally done. I am ready to start my life. I am 26 yrs old and have yet to have much fun in my life due to illness after illness. So, I pray this is the final surgery and all will be corrected. I appreciate your comments, it's nice to be comforted by someone other than family. I know they want to help but there is just no possible way for them to understand, and I can't fault them for that.

Now, not that I am one to be giving advice but I read that Robin, you were wanting some Reglan, be careful and keep track for how long you take it for. I have been on it for the past 3 yrs or so and finally came off of it, I started having nervous ticks really bad, my eyeball would jump and my lips would quiver making me look like I was doing a very bad Elvis impression. I have talked to others who have had the same side effect. I will still take it every once and a while (because it is an effective medicine for my nausea) and if I don't take it continuously I don't have a problem. That's all the advice I feel I can give at this time. Again, thanks for all your help and encouragement it means a lot.

AJ

Posted 8/1/2007 2:41 PM (GMT 0)

AJ

Welcome to the board. This is the best group of people and you're sure to find the answers to any questions you may have. I'll be joining you in September. My doctor will be leaving in about four inches to keep me from getting diarrhea. He said that they will be looser than normal but that I won't have 15 + BMs a day.

Posted 8/1/2007 2:54 PM (GMT 0)
Irish- I hope things go well with you. It has been a long time coming for me, but I have been told by doctors in two states that I have one of the very best working on me. So, I am becoming more confident this is the right decision. I asked about leaving part of my colon in for that specific purpose but he said that the whole thing was "dead" and not functioning at all, so it all has to come out. Fun Fun. But he assured me that eventually I will not have but maybe 3 bm's a day. But considering the last 15 yrs have been not going, I am kind of excited.
Posted 8/1/2007 5:23 PM (GMT 0)
I am going to my GI specialist today and I am going to beg, plead, cry for help. This will be my 9th appt in a little over a year. I am praying that he will FINALLY believe me rather than sending me home. Wish me luck! I said my morning prayers so I am good-to-go!

Take care,
Amey
Posted 8/1/2007 9:54 PM (GMT 0)

Kimber, I haven't heard from you in awhile and am wondering how you're doing?  We're both on the final countdown now, and I feel that I'm finally ready but also scared.  It was hard for me to type at work today as I'm a little shaky and jumpy.  Soon we'll have our colectomy and see our moms.  I'm really thankful that they'll both be here for us.

Everybody, I thank you for all of the friendship, advice, and time that you have given all of us.  I am so happy for this forum and all of the information that's here for us.  Before I found this forum I had consented to a colectomy, but I truly didn't know what it felt like for a person and not a textbook definition.  Thank you all for the devotion with which you submit bulletins to help others.  yeah

Lori

Posted 8/1/2007 11:21 PM (GMT 0)
Flbutterfly,

How much time to you have left? I think you have about a week, right? Ok, start making your list of what you will want to take with you and any foods you may want to have on hand at home. Here are some things to take with you in the hospital....a mirrror, a pair of elastic waist pants and comfortable shirts (I never wear those hospital gowns), mouthwash, conditioner for your hair (hospitals only give shampoo, this is fine but what about the tangles), a hair brush (hospitals only give out combs...yuck), a good book (might I recommend the new Harry Potter book, it's good!), underpants, a change of socks (you only get one pair in the hospital so you need fresh ones), sandles or flip flops to walk the halls, an MPS player if you have one to walk the halls....that is all I can think of for now. I brought my MPS player and walked about 2 hours a day (one hour in the morning and one hour in the mid-afternoon)...Hey, what else are you ganna do?? watch TV??? talk to your roommate??? For me, I would rather walk. Three days after my surgery, I was walking a couple miles a day around my recovery floor. The atmosphere was boring (what is there to really look at in the hospital other than patients, nurses and beds?) but, it promoted healing and kept me busy.

Good luck with your surgery..

Take care,
Amey
Posted 8/1/2007 11:25 PM (GMT 0)
Amey,

How did things go with the doctor today, did he give you
any answers?

Apri
Posted 8/2/2007 12:46 AM (GMT 0)
Hi

Other things to have on hand post surgery...calmaseptine ointment.....very soft toilet paper....

those witch hazel wipe pads may cause irritation so you may want to get baby wipes....

Posted 8/2/2007 1:18 AM (GMT 0)
April,

I took a different approach when I went to the GI specialist today. I have been going to him for a while with the same symptoms and no "real" solutions. So, I sat down the other night and I typed a formal letter to the specialist explaining my entire history and ever symptom I am experiecing. The format was very organized and detailed. Overall I typed about 3 full pages telling him everything I have tried in the past and everything I am experiencing now.

So, I was in the room where nurses take patients who are next in line to see the physican and the doctor finally came in and asked me, "what brings you here to see me today." I did not answer him and tell him all of my problems; instead, I handed him my detailed letter. After he spent about 20 minutes sitting there reading the information, I asked him to please sign the bottom to the letter stating that he had "read the paper and understood my complaints." He signed and dated the bottom of my letter and then I asked the nurse to make me a copy for my records.

I told him that from now on I want everything documented. I want written proof that I am indeed telling these doctors my problems and they are sending me away. Then I had my husband accompany me to my appt and he is an attorney. With all of these factors, I think the GI specialist thought to himself, "I better take this girl seriously."

Today my specialist spent 2 HOURS talking with me! That has never happened before! He has scheduled me for a sigmiodoscopy (which is what I BEGGED him to do at my last visit in May). I should have the sigmoidoscopy by next week. Then, depending on the findings of the sigmoid test, he may send me for a surgery consult. In addition, he is sending me to South Carolina to meet with someone who specializing in hard case motility disorders.

For the first time in almost a year I left his office with a feeling of hope. I am elated that he is going to try something, anything! He said I am a very rare case, a very unusual case and he has never seen anyone like me....lucky me. I am glad that he took me seriously...that is all I ever asked for.

Thanks for asking April! I apprecaite your inquiry.

Amey
Posted 8/2/2007 1:42 AM (GMT 0)

Hi Amey,

I can sympathize with you.  I too was not believed.  My GI doctor told me he has lots of patients who have a BM once every 3 or 4 weeks.  I finally demanded he write a referral to the Cleveland Clinic colorectal surgical department.  I brought all my films and test reports (I had been hospitalized for a pseudoimpaction)  My sitz marker test showed all markers within my colon after 7 days...

Well before the surgeon Dr Geisler saw me, he was in hall way reviewing the films and reports and I am telling my husband I hope he believes me...what can I say to him to make him believe me...He walked into the room with a large pad, introduced himself and said I can help you, this is what I recommend we do.  He then spent the next hour drawing pictures of the surgical procedure...recommended that I have the entire colon removed as the whole thing is diffusely involved and if he did partial colectomy my chances were great that I would have to have a second operation to remove the rest. 

He said he would perform the surgery laparascopically and told me the odds of having a temporary bag and possible conversion to open surgery.  I received heparin just preop and had compresison boots to prevent blood clots.  I live in New York and it was difficult to go to Cleveland but you have to go were the experts are. 

I nearly cried after the consultation because I didn't have to say a word to him...the evidence of colon inertia were right there....

Although your GI doctor said its rare and unusual, I beg to differ...I just think the GI doctors just don't want to be bothered with us and check it off to "hysterical" women..Just look at this forum and see how many people this effects....

For all you guys going for evaluation, do what Amey did...demand a full work up...make sure they are listening..if not find someone else.  By all means go to a very experienced surgeon even if it means traveling

Posted 8/2/2007 1:48 PM (GMT 0)
Thanks Phyllis, you are an inspiration! My sigmoidoscopy is scheduled for Friday. He is going to look at my anastimosis and see if it has narrowed or has too much scar tissue creating a blockage. He said he WOULD give me medication before the procedure. I am very grateful for that! You may want to talk to your GI specialist about meds before your appt. My last sigmoid test was over a year ago, just before my surgery, and when the specialist came into the room with the scope and machine I said, "wait, what about some pain medicaiton." He said, "Oh, this isn't a that bad; it's not like a colonoscopy." Stupid me, I believed him until he had that thing so far up my rear I felt like I was going to throw it up out of my mouth...I kept gagging from the pressure and screaming from the pain. I am not trying to scare you; I do not want you to experience this.

Hopefully something can be done at my sigmiod test to give me some relieft; I have only been eating Jello for 11 days! I will keep you posted.

For everyong else, Phyllis is right...BE VIGILANT WITH YOUR DOCTORS! DEMAND HELP AND GET THERE EVERYTHING IN WRITING AND MAKE THEM SIGN IT!

Take care....
Posted 8/2/2007 2:29 PM (GMT 0)

AJ

Sorry to hear that they can't leave part of yours in. Either way, I'm sure you'll be fine. Most of my problems are in the transverse and descending, so leaving in the small piece of the ascending should be okay in my case. My problem is that they usually hook everything back up to the sigmoid colon, but that was removed when I had my first surgery two years ago. I'm also having stents put into my ureters before the surgery to help ID them. I've had a lot of abdominal surgeries so there is a lot of scar tissue hiding things.

Posted 8/2/2007 3:03 PM (GMT 0)
:-)  WOW - What AWESOME support, advise, and encouragement from ALL you ladies!!!  This is the most amazing thread I've ever been a part of.  Such a willingness from all to share our stories, concerns, experience - the list goes on and on!!!

AJ - Thanks for the info on the Reglan!!!

PHYLLIS - As always, great advise and compassion!!!

AMEY - I'm happy to hear your "new" approach yeilded hope!!  Great advise as well!!

Irish - Good luck with the stents - when is that surgery?

OK - I'm right now at the nine month pre-op timeframe and I have a question regarding the part where they leave in "some" of the colon during the TC.  In all my consults with the surgeon he indicated that ALL of the colon was going to be removed due to extent of Colonic Inertia.  Well, two or three weeks post-op, when I was still experiencing a lot of pain and I was readmitted thru the ER.  He came in and told me that he was going to do a colonoscopy to see if where they attached the small intestine to the rectum had a blood supply problem.  Once in the room he indicated to all the necessary techs and anesthesiologist that I had just had a TC two or three weeks prior and I only had very, very little colon to work with.  Then back in May/June when things started slowing down quite a bit quite suddenly and I began bloating and sort of feeling like I did pre-op he scheduled me for another colonoscopy to see if there was some narrowing going on.  Again in the room, he indicated to all the people that he only had very little to work with.  Thankfully for me all came out well with the exception of him finding a few polyps and removed them.  He indicated that I more than likely have a "slow" small intestine and that could be playing a roll in everything.  I asked him what if I continue to have problems or they get worse he indicated that he would removed what little colon I did have, however, that would be a last ditch effort.

So my question here is.....why do they leave a small amount of the colon, especially when they reconnect the small intestine to the rectum.  It sounds as though there are a few here that have had a small amount of the colon left in and it has cause you problems.

I hope someone is able to answer my question.  Many thanks to all!!! 

 

Posted 8/2/2007 3:14 PM (GMT 0)
Hi Robin

I don't no what to tell you...My surgeon told me he was removing all of my colon as the disease is diffuse and that if any was left in I could face reoperation to remove the rest....

Posted 8/2/2007 3:47 PM (GMT 0)
Irish-Mom,
Are they having to put the stents in because of all your abdominal surgeries? My Dr. didn't say anything about that, but now I am curious i have had 6 abdominal surgeries within the last 5 years. I wonder if that would make a difference because I have been told I have quite a bit of scar tissue. That may be something I need to dicuss, but I am know my Dr. is aware of that fact. When is your surgery? Let me know how it goes.
Posted 8/2/2007 5:13 PM (GMT 0)
Wow about the Reglan causing you the twitching problem. I just read up on that so I can be sure to watch out for anything like that. I was told to take it 3x a day, but I might try just once or twice. I did read that if you have those problems, that they usually go away soon after stopping the medication. did yours? I still am very happy with it though and will continue. I think all these meds seem to cause more and more problems for us. It seems the laxatives will lessen the mobility in the long run. I know I used to like taking the SennaKot. It worked and didn't make me rush to the bathroom...they say that's a natural vegtable laxative.

Oh and I don't feel loopy at all on this or have anxiety problems because of it. I usually take it at the wrong time though. I take it after I eat and I'm supposed to take it before. So usually I have a BM the next time I eat or drink something.

Stephanie

Post Edited (tyblossom) : 8/2/2007 11:17:16 AM (GMT-6)

Posted 8/2/2007 5:41 PM (GMT 0)
Tyblossom- I have been on Reglan for so long. I was taking it 3x a day for 3-4 years and I never had trouble with any side effect til fairly recently. I quit taking it and found that I would rather twitch so I only take it once a day usually before dinner and I have had no major effects. I was unaware that it helped you go to the bathroom. My GI always gave it to me because I stay so nauseaus. It has never made me feel the urge to go.

By the way, I have been doing some more reading on the total colectomy and the Dr. told me I would have a tube running out of my nose for a day or so. How bad is that? I have heard it makes you have a gag reflex. And do they sedate you when they take it out? It's pretty sad I am more nervous about that silly little tube than the surgery at this point.
Posted 8/2/2007 6:36 PM (GMT 0)
AJ,

I have had 3 abdominal surgeries. When I awoke from the first two surgeries I had the tube up my nose. The tube goes into your stomach and sucks out any bile build up. Your body constantly makes bile (it looks like a dark green solution). the tube keeps you stomach empty so your intestines can rest for a couple days and heal.

My last sugery, I awoke without the tube. I was excited that I did not have to have it....until the second day after my surgery. The bile was building up and up and my stomach was getting bigger and bigger. The doctor said it would pass but I felt like I was going vomit. By day three, I begged the doctor to put the tube up my nose (I was desperate). He said that he has NEVER had anyone ASK for an NG tube, but I needed one bad! So, a nurse came in and shoved the tube up my nose and slowly pushed it into my stomach. It was a horrible experience. After the tube was inserted, they turned on the suction and the tube filled with green bile that had been sitting in my stomach. The tube in a like a garden hose going in reverse. By the next day I felt better. I did not feel sick anymore and was grateful for the tube.

As for you, they put your tube in while you sleep so you do not feel it. When they pull it out, it DOES NOT hurt, it just feels like your blowing a huge bugar...It sounds gross but it is not as bad as you think. Plus, it only takes a few seconds to remove. I am sure you will do fine..

Amey
Posted 8/2/2007 6:50 PM (GMT 0)
Thanks Amey, I guess I am just weary of how it will feel just sitting there in the back of my throat, you would think you would have a gag reflex from that. Oh well, I guess if it is just a step to getting better I can do it. I wouldn't mind it at all if all that I felt was it sticking in my nose. I know that is silly, but I am a huge wimp when it comes to little stuff like that.
Posted 8/2/2007 7:57 PM (GMT 0)
Lori

How are you feeling these days? I know your scared and nervous right now but try to think of how great we will feel in a few months. When is your last day at work and when will your mom be there?

I have been pretty nervous lately. I have been having really bad headaches every day which worries me because right now I am taking as much as 6 excedrin each day. They barely relieve the headaches and as off 5 days pre surgery I wont be able to take them at all. I will have to suffer through it. I am also having indigestion problems that I have never had before. I think its all caused from stressing and worrying about the surgery.

I hope your doing well :-)

Posted 8/2/2007 8:14 PM (GMT 0)
Hey AJ. That's wild about the Reglan being for that. I wonder if it doesn't help with digestion and that's why it works for you. Your probably so backed up and would be worse without it. I read up on the twitches and I'm a little concerned because my dad has Parkinson's...so I'm not sure if it can increase chances of that...I can't decide if I should try and go back to the Senna instead....ack!

I had the tube 3X after abdominal surgeries...major ones, and then I asked for it for the colectomy because I heard others really getting sick to their stomachs and had to have the tube put in while awake. I was freaked about the idea of that. Sooo I remember waking up with the tube and while they were taking me out of surgery I can remember I took it out myself. I was out of it and it must have itched or annoyed me or something. So I really ended up not having it and I was ok. I'm really easy going and the tube never bothered me...I do gag easy though and that wasn't a problem...it was more sore on the back of your throat after time and it's annoying to swollow, but you get through it. Better to have than not in my opinion even though I was ok...as for taking it out...its so fast it won't bother you. There's no pain with removing it..

Stephanie
Posted 8/2/2007 8:34 PM (GMT 0)
I have never tried Senna, but if it works...Since the Reglan my General Physician put me on Phenergan then moved me to Compazine. The Phenergan caused the nausea to go away but completely impossible to have a bowel movement. So now I am curious, exactly what is Senna?

Thanks for the advice on the tube thing, My Dr said I would only have it for a day or so and who knows, maybe I will be to doped up to even notice. hahaha.
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