TOTAL COLECTOMY PART 20

Hodaya,

Thank you for your feedback.  We do have similar situations.  I can definitley relate to everything you said as it is exactly how I feel.  At times, I have put so much pressure on myself to make the decision but then resort to just dealing with it.  I am 48 years old and can't even imagine living like this the rest of my life.  I have battled colon problems since the age of 16 (colitis, irritable bowel syndrome, constipation) but have only dealt with the colonic inertia for the last three years.  Laxatives are the only remaining thing I have tried that works.  The Zelnorm worked for aboout 1 1/2 years and stopped working about 2 months before they took if off the market.  I have tried Miralax, phosphosoda, etc. but I am hooked on the Ducalox as I know it works and I will get that relief.  For how long is anybody's guess.

With working full time, I find my only option is to take the laxatives on the weekend.  Some days are better than others, but by Tuesday I am fatigued and feeling bloated all over again.  I imagine you feel the same way.  I find myself starting to eat less smaller meals and eat what I call "safe" foods such as yogurt and soup.  I stay away from red meat as I don' t tolerate it well and drink no soft drinks to try to eliminate some of the bloating I feel.

If you do not mind me asking, have you taken laxatives the entire 15 years you have had CI?  I can only imagine how difficult it has been to struggle with this condition for this long.  Are you a candidate to remove the large intestine and use your small intestine?  I keep telling myself that I will know when the time is right and my surgeon assures me of that as well.  I know this surgery may not be the perfect solution and that removing the small intestine and using a bag is certainly something that could happen later on.  I have a friend who had this surgery as her colon was diseased and she has gotten along just fine for about three years.  If only there was a guarantee.  Thank you for pointing out the success rate and I was unaware it was that high.  That is a good thing.  What are your major concerns about the surgery?

Thank you again for the information you provided.  Since joining this website, I feel like I am not alone anymore.  I have tried to take one day at a time but I have to admit it is difficult some days. 

Take care and I wish you the best as you make your decision.

Sue48

I just wanted to let you know that I've been using laxatives at least once a week, for 30 years.  I'm not kidding, I have lived my life like this.  I always had problems as a child, and when I was 21 (I'm 53 now) I finally had tests and found out my colon just wasnt working.  I took senokot on weekends, just like you, for years and years.  The past several years I just can't last a whole week, so I take it about every 4 or 5 days.  I take the senokot at lunchtime, and then spend the entire evening at home just waiting to clean out.  I can so relate to you!  It's just not a fun way to live at all.

You will get wonderful support and information on this board.  It's terrible that others have this problem too, but it's nice to know that we're not alone!

Janie

Janie,

what do mean 124 markers???? was that just a typing mistake on your part?? cause the capsule has only 24 markers in it... how many capsules did you swallow??? LOL i was laughing out loud at your surgoen's gokes about some of the markers stayed from the last test 10 mons ago...   this guy is really funny!!

i'm so glad to hear about your esophagus, i hope you don't have any problems with that. say, is it possible that maybe after surgery you won't even need the Protonix...?

i don't vomit either, and i suppose it's a good sign that shows we don't have a lazy stomach or lazy small intestine. but i hope after the large is gone we don't have any additional probs.

i think he was being really fair by offering you to get another opinion. he sounds like a very honest dr./person. i like him!!

i'm also very glad he's optimistic.

please DON'T think of the worse, Janie   . you have to be positive. the chances this could happen is very rare!!!! you're still young and have lots and lots of years to spend AND to even see your grandchildren graduate from college!!!! 

you know, the GIs are always the ones against this surgery. mine has always tried to claim against it too. as for continues visiting to the gi, well, as long as there are probs., there's a need to see the dr., you know..., BUT lets hope non of us will ever have to see the gi ever again. but honestly, we have to be realistic and we can't expect that after such a major surgery we won't have ANY probs. i can always hope i'm wrong... but it's most likely we'll have some issues, at least during the first year or so. at least lets hope they're not major probs.

all in all, it's sounds like your visit to the surgoen went very well. sounds very encouraging.

one thing i think you should really ask your surgoen is about "sepra film" and "adept" - these are very important substances that should be used at the end of the surgery in order to prevent scar tissue/adhesions. it's expansive though, but really worth it!! try to google these names and see what you can learn about it. also ask your surgoen what he thinks of it. i asked 4 colorectal surgoens and they all praised it, and said it's very important to use them. i don't know why surgoens don't tell us about it themselves, and only if you found out about it on your own and ask for it, then the hosp. would order it for you.

honestly, your surgoen sounds like a great guy to me   !!

sue,

yes, i feel axactly like you. i can take the laxatives at the weekends, but it's not enough. if i don't eat much and keep empty during the week, then it's better, not perfect - there's still pain, but it's better. but if i just eat the smallest meal, then the pain is unbearable. so like you, i just try not to eat much. the laxatives are less affective as time goes by that's for sure.

as for your question about how i dealt with my CI during all the 15 years.... well... that's a long and unique story. i've never mentioned it on here before b/c of the reason it is a long story. i've never met ANYONE who dealt with this prob. the way i did, i'm kind of embarrased, cause my "method" of dealing with this prob. is really strange, but since you asked, then i'll tell you all about it.... well, i'm 35 years old. the prob. started when i was 20 years old. it wasn't so bad like it is now. i was starting to go to school and working and i didn't even notice that i don't go to the loo for a bm. i just noticed that i leaked urine during the day - very small drops here and there, but it made me feel firlthy within 10 minutes after i take a shower, so i went to a urologist who ran some tests and found nothing. today i understand that it was the stools from not going for so long to the b/r that was pressing on my pelvic and causing the presure on my bladder that lead to the leak. as time went by it started to be difficult. and then i discovered that cigarretes are helping with bms. i noticed that if i have my breakfast and smoke a cigarret right after, it actually causes me to have a bm!! but if i don't do that, i can go on like 3 weeks without a bm!!!! 

anyway, i was so happy, so i started doing that every morning. at first a couple of inhales were enough to make me go and it was A LOT coming out. i was soooooooo pleased. BUT as time went by, a couple of inhales weren't enough, so i had to smoke the whole cigarret, and later on one cigarret wasn't enough so i took another one and was smoking in chains till i reached the point i had to smoke like 10 cigarret one after another till i get to feel the urge, it's crazy, i know... but i was totally against laxatives and somking was my only relief. enemas weren't helping since the stool doesn't reach the rectum. only the cigarrets were able to cause the stool to reach the rectum. i did tried some lax', but they all made me feel crampy all day, and the cigaretts gave me a better result.

but after i reached the point when i had to smoke 10!!!! i started to look for help. today the cigarrets don't help at all anymore and i just found some laxatives that work o.k so far. my lungs are not so fine least to say, so i really have to stop smoking all together!!

so you all probably think i'm crazy by now with my unique "method"... i don't do it anymore though since it stopped working for me anyway...

i'm glad you found this site too, sue. i was greatful to find it and to finally feel that i'm not alone.

now, i really think i broke a record with the length of this post!!!!

sorry girls 

Hey everyone....

Well its been a better week. I have not thrown up, but I have not tried to eat a full meal either. So.....Im just tired and waek, but feel ok otherwise. I have been out of milk of mag for 2 days so I thought I would try not taking it and I have the sensation in my belly I have to go and pain in my back, but I cant really get anything out!!! its so frustrsting knowing I Have NO COLON and cannot go without bottles of laxatives.

Anyways...

Sue- Welcome....I too have had CI Inertia for 8 almost 9 years...i am 28. I had a total colectomy Jan 28 last year, but have still been having some complications. Although I am still in the process of trying to get better...I highly recommend the surgery....and no matter what complications I have had I DO NOT regret it!!! It has taken away one huge problem and I am just that small percentage that has more issues after surgery....I wish you the best!! and will be praying for you!!

Janie- Your surgeon sounds wonderful...he reminds me of mine and I could not have been happier having him perform my surgery and aftercare. I know you asked who follows you...well when I started having problems he was who I called and he told me to call him. Even when they thought I had the obstruction....I called him. There was a moment when I could have been released from his service for follow-ups, but of course all of this has happened, but he is still who I would have called if anything were to happen even if I was not seeing him per say.

I think you have made the right decision and its about time you get your life back...and you will. It will be a recovery...it is a MAJOR surgery and I feel no matter how long you talk to your surgeon you can never be fully prepared for what you are going to feel like post-op, but as you heal you atart to get your life back. Although I am having issues...I have my life back after my TC.....it has gotten worse just recently in the last couple months, but I regained confidence I had not had in years and a lust for life I had forgotten about.

KAren-Awe....you made me sad when you said you are not sure if you can have fun anymore:( Let me tell you....you will. After you have this surgery thast they are NOT going to cancel again and you recover wonderfully...you are going to want to be out celebrating life becuase it will be the gift you get from having the TC. Its going to give you back what right now you feel that you can never get back!!!! Keep thinking positive!!! There is a light at the end of the tunnel!!!

Hodaya....Hope your doing well this week. I am eager to see what the doctors say since you seem to have some similar problems to myself, but your lucky you never vomit!!! I love how educated you are about this and it makes me smile becuase as a nurse I feel you are so preparred for wht is/may be coming your way and you have the knowledge to help others!!!

Well...my small bowel follow through to see if I have inertia there is this coming Friday at 745am and then I see my surgeon on the 28th. I still have not heard back from him about the doctors they recommended I see (since they denied my case to go to see Dr. Chey) so I have not scheduled one yet with these new doctors and I have not cancelled my appt with Dr. Chey either!I am thinking he may wait till I can talk to him about this face to face....on the 28th....at least its not too far away!

Hope all is well!!! Just so you know....talk about freezing...its -8 here with the windchill off lake Michigan. We have broken records all week since 1914 with temperatures!!!! I dont even like to get in my car!!!!

lizzie

hey judy...   how are you? it's so nice to hear from you, i've really missed you too!!! i can't wait till you get your computer back.

sue - i forgot to answer you about what my major fears from the surgery are, well, first of all i'm scared it won't work and i'll still be constipated, and it can happen, as some here reported they are still constipated even after the surgery!! i'm also really scared of incontinance and chronic pain for life as a result of scar tissue/adhesions or what ever reason that can cause chronic pain.. BUT, most of all i'm scared of the chance of ending up with an ostomy for life.. that really scares me. but as i said before, we just have to hope for the best, and the chances of ending up with a permanant ostomy are only 2%, but b/c i have suspected anismus, then i'm scared it may happen to me.

Dusty - you're so right about what you said about the rupture. i've also read about it and my brother inlaw's friend, who's a colorectal surgoen in san diago also told my sister to tell me i sould have the surgery asap cause a rupture is a possibility!!

maybe some day the drs. will find out more about CI.

Karen - i want you to know that i SO understand how you feel. my situation is a lot like yours.. i've been REALLY isolated too for the last few years. i spend 5-6 hours bound to my home every morning and then it's time to go to work, so half of the day i'm at home and the other half i'm at work. i finish working at 20:00 and by that time i'm usually in a lot of pain so i don't feel like going anywhere else but home right after work.

my wish is also to be able to have a life and be with friends and family. i haven't even gone to family ocations like weddings and such for the last 1 1/2 years!! it's depressing, i know, and i started to lose interest too, so i really understand how you feel, as i'm in the exact situation as well.. losing interest is as a result of the depression we're in. but i have to admit that going out to work is helping a lot. i don't know what i'd do without this work. i'd be a lot more depressed, that's for sure.., so i really feel for you as you don't even have at least that.

i hope all of this will change for us after the surgery.

Janie - 5 pills???? i bet your x ray was really decorated, ha ha. i swollowed only one, so there were only 24. by the way, the x ray after 9 days showed all 24 were still in there and haven't reached the rectum yet, then on day 10 i had a bm and another little one later at the evening and the next day i had the forth x ray, which was 11 days after and it showed there were 4 markers left above the sigmoind colon. the only reason i had a bm though was b/c i got my cycle that morning.

enjoy your cruise!!

Lizzie - i'm anxious to see my dr. too. i know what he's gonna say..... BOTOX!!! but i want to ask him to let me do a defecography again... as much as i hate this test, mostly b/c of the barium that can get stuck in there, i still feel i have to see how bad it is more acurately, and the defecography is the most acurate test to check the ability of defecation.

i really hate how you have to struggle every day like you do, sweety, and i'm still praying for you to gain the life that you deserve. how are feeling otherwise, have you snaped out of that cold you had?

Heather..... i'm worried about you, it's been a while since you went for surgery on 7 Jan..... i really hope you're o.k.

later everyone. 

Hey all....

Just checking in to see how everyones week has been?

I have my test this Friday on my small bowel.....I will let you all know what I find out. I had a rough day yesterday with vomiting, but feel better today.

Hope you are well.

Lizzie

Thank you for your reply.  I have not had a chance yet to read all of the information but what I have read has been extremely helpful.  From what I read so far it appears that you are electing to have surgery.  I also have a wonderful surgeon and he keeps telling me that I will know when I am ready and I do believe that statement is true.

I wish you all the best and take care.

Lizzie,

Thank you for the positive remarks and I hope that you overcome your complications.  I still continue to think about the surgery.  I also have some rectum problems so I worry at times that the total colectomy will not be my last surgery.  It is a struggle living with CI but I try to stay as positive as I can.  As you know, some days are better than others. 

Take care.

Hodaya,

I do not think you are crazy at all and if it works, it works!  I am just starting to deal with the pain and I am assuming it is colon related???  Do you also deal with bouts of fatigue?

I am still trying to figure out what symptoms are actually related to CI.  I have decided to consult with a gastroenterologist who specializes in this area.  I guess I still feel the need to exhaust all my resources before I consider surgery.  Keep me posted on how you are doing.

Take care.

Sue

i had to use suppositories for years - i would get through about a box in the morning just to try and move the stool.  

my consultant told me that i couldnt go because the colon wasnt contracting enough to push it down into the rectum.  However i never had what you would call a 'normal' bowel movement usually slushy or slog; but even so i also had to use my finger to push a little inside which seemed to help, but it felt obstructed - do you feel like it is obstructed?

I was then that i had the STARR which stands for stapled transanal rectal resection and at the same time diagnosied with slow transit.  I had quite a substantial mucosal prolapse not a full thickness prolapse.  however i still felt the need for assistance after.  it was then that i had an MRI  which showed twisted bowel stuck between the vagina and rectum. 

Anyhow i am not saying that you need the STARR - i think symptoms all inter-relate somehow.  But it sounds like your rectum may have prolapsed a bit.  do get all the GI tests done.

hi all

well, i've been to the gi dr. today. not much to say yet. after we've talked a bit and he went through the tests i've had, he then said they'll have a discission about my case and in 3 weeks he'll call me to let me know what's the next step. he didn't reveal any of his thoughts as to what his opinion is to me yet. he said i don't have to be in the consultation, i'm kinda glad i don't have to be there and face all of those drs., i didn't feel comfortable about it in the first place.

so now it's just a waiting game. what if they say they don't think surgery is right for me...? what if they say it is....? both possibilities make me shiver..  but if i put on a scale all my thoughts and emotions, what i mostly want them to say is, of course - SURGERY. i do want to hear it, in spite of how scared i am and all..

ooohhhh, i just trust in G-D that what ever should happen will happen and everything that happens only happens b/c it was supposed to happen, right? 

i hope everyone else is feeling good...

Heather..... please, just let me know you're still alive. i hope the surgery went well and you're o.k. i wish i could hear from you    and know how you're doing.

love you all.

Hey everyone....

I have both my small bowel follow through and defecography tomorrow morning at 930am. I then see my surgeon Wednesday at 11 am for the results and discussion. Im nervous...and havent been sleeping well, but hope all goes as well as it can.

Hope your all well.

Hodaya- I hope these next few weeks go ok for you and that you get some answers shortly:)

Lizzie

Hello-I've been a lurker for quite awhile just trying to learn. I've had severe constipation my whole life. I'm 48 so that's a whole lotta years. I've had all the tests you all mention here, plus a 2nd opinion. Everything works fine except with the sitz marker tests all of the markers make it to the last part of the colon and stay there. I need to use home tap water enemas to have a bm and I hate it. Those make me feel sick too. I haven't checked to see how long before I have a bm on my own, but it's not unusual for me to go 10 days without anything happening. OK, my question is I am wondering how much of what I am feeling is due to the constipation. Let's see, fatigue all the time, headaches, sometimes it's hard to even move, kind of like it takes a lot of effort to stay standing (I don't know how to explain this feeling), bloated, full, don't want to do much of anything. Some of this I know is due to the colonic inertia but wondering about the tiredness, etc. Right now my options are to keep doing what I'm doing which is the huge enemas or to have a total colectomy. What I wanted to hear from both doctors is that surgery would be 100% successful! I know they can't say that legally. Technically there isn't any reason why it shouldn't work, but as you all know things happen. The only thing that is not typical for ci is the marker test because of them all being in the last part of the colon. I feel good about my surgeon. He said he is very selective in who he will do this surgery for constipation. I've done all that there is to do without results. I'm pretty sure I'm going to do the surgery, but am scared about something going wrong. It scares me thinking of the possibilty of ending up with a bag. My sister has one and she has never felt better so I should be ok with it. But since this is a voluntary surgery I keep wondering if I should just suck it up and live my life this or go for it. The thought of being able to go to the bathroom without scheduling it into my week, not feeling so sick, and maybe not so toxic would be so cool. So someone tell me if I am being crazy or just normal when it comes to these decisions! Did anyone feel the yucky, tired, blahs, not interested in doing anything as more bm sits in you? I'm also trying to figure how to schedule this with 4 kids. Thanks for any advice! 

Linda