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TOTAL COLECTOMY PART 35 THREAD 14

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Posted 7/9/2010 7:48 PM (GMT 0)
Yeah Tracy, my surgery is less than three weeks away! On the bright side, three weeks from now it will be all over with but the healing.
My surgeon said he will leave about eight to ten inches of colon just to have "storage space" for the waste. He believes that amount of colon will keep the bm from just shooting through me. The visual I got from that phrase was enough to get me to agree with him. :)
Posted 7/10/2010 12:13 AM (GMT 0)
Hi Val,

My surgery was a subtotal also and my surgeon left about 2 in; I haven't had any "accidents" but I do know where every bathroom is everywhere I'm at LOL.  It's such a relief to be able to go to the bathroom each and every day, you're going to amazed at how great you're going to feel.  I'm very excited for you!:)

Praying for a successful surgery and a speedy recovery,

Judy

Posted 7/10/2010 1:16 AM (GMT 0)
Val,

Love the visual. Best wishes. Rosemary
Posted 7/10/2010 2:22 AM (GMT 0)
Hodaya,
So glad to hear you're doing well!! I'm sure your surgeon had a reason for doing what he did....am anxious to hear what he says. I'm very happy you're happy with your ileostomy because if the miralax ever stops working for me, I'm sure that will be my only option.

Val,
You'll be amazed at how much better you'll feel after surgery. Things aren't perfect for me; my surgeon didn't leave any of my colon and I still need miralax to go....but I never was able to go with miralax before, so I'm not complaining.

Judy,
Hope you're having fun with your daughter. Enjoy your vacation.

Hope everyone has a wonderful weekend.

Hugs,
Janie
Posted 7/10/2010 8:24 AM (GMT 0)
Hodaya!! What a surprise to log on and see your post! So happy it is over and your okay pain wise!! I have been thinking of you.. praying for you!!

Val, I have my surgery to repair my rectocele (again) and prolapsed pelvic organs and they may do a THIRD rectopexy! Somehow things didn't stay where they were suppose to, causing me trouble emptying my bowels (and bladder). I go to the hospital the 26th, so we'll be "bed buddies"!

Janie, I'm totally like you.. not perfect, but the Miralax does work. Because they did keep most of mt colon, which is still redundant in the tranverse area, I can get constipated with hard stools, so I think Miralax will be a lifetime thing. Does the DD coffee coolatta's still work? One thing about me and my slow colon, is that I can eat anything I want and not get diarrhea! I can eat all sugar free stuff, fat free pringles, etc.. does not to me.

Rosemary, are you all packed up yet?

Yesterday I received some pre-op stuff in the mail, makes the date of July 26th so much more real! I have to have a 2 day bowel prep.. ughhh, I've had so many bowel preps the last 18 months... I think this is #6 or 7! They are going to restrict me to lifting no more than 5 lbs for 6 weeks, and after that no more than 20 lbs.. maybe forever! That's crazy, as I'm very active and seem to always be lifting, or moving things!
Posted 7/10/2010 11:52 AM (GMT 0)
Thank you for the information, well wishes and prayers ladies! Judy - It is amazing that two inches is enough of a storage space for a person. LOL @ you knowing all the bathroom locations. I'm sure I will too. What a concept after not being able to go without meds!

Rosemary - I'm so excited for you! Are you leaving home Tuesday morning or do you have to travel to the sea port?

Janie - Did you have testing done to see if the rest of your system was slow? Got to say that I would be grateful if I went with Miralax so I'm happy for you. Just wish you could be "normal".

Oh Jenise, you have gone through so much with those rectocele repairs! Does the rectopexy need as much recovery time as colon surgery does? Bed buddies - too cute. The closer it is to surgery the more I will need encouragement. Right now I am focusing on the mechanics of getting things checked off on my to do list.

Any word on Hodaya or Lizzie? Keeping them in prayer.

Val
Posted 7/10/2010 1:37 PM (GMT 0)
Hi Val,

Going to ship port Tues and getting on the ship.. WIsh me luck, as long as I stay OK health wise, anything else can be ironed out. THat is my mantra.

Good luck on surgery Val and Jenise. Rosemary
Posted 7/10/2010 4:33 PM (GMT 0)
Hodaya-so good to hear from you and that you are doing well!!!!!! Keeping you in my thoughts and prayers always; continue to heal and sending youhugs and much love:)

Janie-Am enjoying a much needed relaxing vacation where my biggest decision each day is if I'm going to the pool first or taking a walk or maybe doing a little shopping.  My daughter works literally everyday from 10-7 though she did take one afternoon off and we went to lunch and the beach together:)  She's a very hard worker but she's also 21 and we all know how 21 yr olds are LOL so she's out every night after she feels she's spent "enough" time with her mom:)  which is fine with me; a friend of mine asked if I went out with her and I said no  bc I really don't need to hang out with 20 yr olds every night LOL love them but.......

Rosemary-Have a great time on your trip and I pray that you remain healthy the whole time:)

Val & Jenise- Wishing you both the very best with you upcoming surgeries; try to get everything done around the house ahead of time and make arrangements for someone to come in to clean for you:) Am praying for you both:)

Am off to go shopping with a friend then out to listen to a band play tonight.  Hope you all have a wonderful day!

Peace and prayers to all,

Judy 

Posted 7/10/2010 7:13 PM (GMT 0)
Hodaya-so happy for you!! I cant believe you had already posted. I hope this gives you a new outlook on life. Do you think this surgery was easier than the last??

Talked to Lizzie yesterday via text and I just feel so terrible for her. I can tell that she has just had enough!! She sounds so weak. Will be praying for her tomorrow with my pastor, so lets make sure we all remember her as we worship on Sunday. Love her so much!!

Judy and Rosemary, sound like you both are getting some well deserved rest and relaxation. I took this weekend off playing.

So today is day #2 off Vicodin. I had very bad withdrawls yesterday and today is going easier. I was on them for a year and a half and just decided I had had enough! So tired of always having to have it. I will say that I was definetly addicted to them. I hope I can keep going without them.

I have been having terrible joint pain and was wondering if anybody else had experienced this. I know that Lizzie had. I am going to a joint doctor next week so it will be interesting to see if he thinks this is stemming from the autoimmune disease that attacked my colon.

Have a great weekend everyone!
Posted 7/10/2010 9:40 PM (GMT 0)
Praying for Lizzie. Rosemary
Posted 7/10/2010 10:57 PM (GMT 0)

Hi Ladies,

As soon as Lizzie arrived back at Cleveland, they did a scope to take a look at the valve. Sadly, she will be having surgery for a permanent ileostomy in about a month (the date has not been set yet). They put another tube in until then, but she is in a ton of pain, so pray that the pain team would get an effective regimen worked out for her. Also pray for great pain team for her in Michigan. She will need to see a pain doctor there as soon as she gets home; this will allow them to monitor her closely and keep her comfortable until surgery.

 

Pray for a smooth surgery and an equally smooth recovery that is free from ANY AND ALL complications. Also pray for TPN well in advance of surgery. At this point, she cannot take in enough by mouth, and she needs some help to get enough calories so that her body can heal quickly and properly.

 

Thank you all so much!!!! Hope your weekends are blessed!!

 

Allie

Posted 7/10/2010 10:58 PM (GMT 0)
so i have an ileus again. im not vomiting, cuz they gave me tons of meds for that. ihave alot of abd pain and nausea, my stoma isn'nt producing much,
Posted 7/11/2010 12:03 AM (GMT 0)
Hodaya,

This is not unusual though PLENTY painful. I do remember it well. Remember I said they usually only give post-op's ice chips. I think you were drinking some actual liquids from what you said in your post(?) That may have been too much. Hang in. I had it for a month, BUT I went in very damaged and had been unable to eat for 7 months prior to my surgery, so you will not have it that long. I will pray your's is short as it will be.

Allie,

Thanks for Lizzie update. Is it at all possible that they could do the ileostomy before 4 months. That's an awful long time to wait. Won't she be weaker by then?

Rosemary
Posted 7/11/2010 1:52 AM (GMT 0)
Hodaya, hang in there...walk as much as you can tolerate to wake those guts up.
Posted 7/11/2010 3:22 AM (GMT 0)
Hodaya,
I'm so sorry you're having problems. Hope it doesn't last long and you get on the road to recovery!

Poor Lizzie. That poor girl has been through so much.

Val,
I had a small bowel follow through before surgery and it was fine. I do know that I have pelvic floor problems and that's my biggest problem. I feel like the stool passes through quickly enough but gets to my rectum and gets stuck. If I don't take miralax, I get totally stopped up. Even with miralax I occasionally have to drink prune juice. The miralax makes me go often, but still only a little bit at a time. If I want to go out and eat lunch or dinner and not have to go right away, I take a lomotil and that will stop the food from getting to the rectum. Because it only takes one lomotil to stop me from going for hours, my surgeon said he feels my small intestine is affected even though the test came back ok.

Jenise,
Yep, the coolattas are still working. I have one every single morning. The people at DD must think I'm crazy; on weekends I buy a couple and freeze them. If I don't drink one in the morning miralax still makes me go, but the coolatta just seems to give me that boost to get things out fast. Otherwise I have to run back and forth to the bathroom so many times. I've tried so many other things, but nothing works like my coolattas! We're going on a 3 day cruise next week and I'm praying the ship's coffee shop has something like a coolatta. We haven't cruised since surgery, I'm worried about all the eating I like to do! I know I won't be able to eat like I used to, but I'm hoping it won't be too difficult.

Judy,
Sounds like a fun vacation; our kids are all a little older but still fun to have around. I had my little 19 month of grandbaby for 2 days and had the best time. I hated to give her back!!
Posted 7/11/2010 3:53 AM (GMT 0)
Rosemary, yeah i did started drinking water on friday and it was o.k, but that's maybe b/c i was givn morfium? cuz then on saturday every little zip of water was too painful so they put me back on iv. thanks guys, i'm trying to walk.
Posted 7/11/2010 1:47 PM (GMT 0)
Tracy, how long did it take for your stoma to work after the surgery? im so frustated it's not working :(
Posted 7/11/2010 2:51 PM (GMT 0)
Hi Hodaya,

I looked back at some old posts and I think Tracy's stoma started to work on day 5 or 6 which is not that bad at all as ileus's go.

She had her surgery July 21 and I posted on the 26th that she had passed gas and was better.

She will likely be along to be more specific, but that is the timeframe I gathered from the old posts.

I (THE QUEEN OF ILEUS) remember how awful it felt. Glad they put you back on the IV's and npo (nothing by mouth). Walk as much as you can, walk, walk, walk.

I was in tears one day walking the halls and a nurse from another ward asked what was wrong and I said ileus. She said, Oh, yeah that's where you have to walk to Canada and back.. I said that would be it! So it is a common complication and temporary. Hang in. Rosemary
Posted 7/11/2010 3:01 PM (GMT 0)
thanks Rosemary, hope my bowels wake up soon. but anyway, with the minimal output i've had all day i sit here and i tell you, i can definitely smell my stoma amd it stincks!! the stoma nurse is gone for today, it just feels so lousy.
Posted 7/11/2010 3:48 PM (GMT 0)
Hi Hodaya,

I also smelled something at first, but you should not be smelling anything unless you are emptying the bag into the toilet. It turned out the first appliance set they put on me leaked and that is why I smelled something. So when the stoma nurse comes back, tell her about the smell and that you need a new appliance system that does not leak.

If the smell you are referring to is a smell when you empty your pouch then that does happen from time to time depending on the state of your guts and what you have eaten or drunk. So not to worry about that.

Rosemary
Posted 7/11/2010 4:53 PM (GMT 0)
Hodaya, Rosemary is right....my stoma did not start working until the 6th day....it started producing small amounts on the 5th day, but it was not enough to keep me from vomiting. YUCK
I know I was so nauseas that it was very hard for me to walk. UGH Bad memories. Makes me think maybe I never want another surgery again and maybe I should just keep this stoma....LOL We will see! Atleast you aren't throwing up....that is a good thing....keep walking and don't let the nausea keep you in the bed....

Rosemary, I changed the ostomy system today with hubby's help....:) and we used the convatec sur-fit natura with moldable durahesive barrier...well it hurt to press the bag onto the barrier because it does not have a floating flange. OUCH It took both of us several minutes to snap the thing down....with both of us pushing down onto my still sore belly. But, we got it on and now we are just hoping it does not leak. The hollister system with the floating flange is more comfortable to apply, but it leans forward out of my clothes and is very obvious. No hiding it....This convatec seems flatter against my body.

My skin is still red and does not look good! I applied the nystatin powder and so I am hoping it clears up a little more by the next change. I am still taking the diflucan too...
Posted 7/11/2010 7:57 PM (GMT 0)
Tracy,

OMG, I'm sorry I forgot to tell you to coat the ring on the bag of the convatec with foam soap before you press it on you. It goes much easier.

I put mine on all assembled, as I use the see through bag, I can see that the edge of the wafer hole is not touching my stoma. I've been doing it this way for so long that I totally forgot about the press-on issue being easier with the soap. Just doing the painful press-on one time will not harm you, but it likely was not pleasant. Sorry about that.

I tried that floating flange one time and it did stick out way too far. I think you will like the convatec once you get used to it and either put it on with the bag already clicked onto the wafer like I do now or use the foaming soap to make the click-on go lots easier.

Still packing. Hope I stay OK. I found out that numerous of my issues with lightheadedness, low energy, and feeling like I'm staggering when I'm not is due to my pernicious anemia (B12 that I have to get in shots). Turned out I had this PRIOR to that disaster 2006 surgery. This was put together by an endocriniologist. When I told him of all my symptoms and reasons for the disaster 2006 surgery and all that followed, he said you didn't know you had pernicious anemia prior to the July 06 surgery as it was not diagnosed until Aug. 06 after the surgery. BUT it clearly existed way before then. He said that disease, until it is treated, can affect nerve impulses to your intestines and to the rest of the body (hence my lightheadedness, feeling of staggering, lack of hunger and all the rest.) So, with the anatomoical issues not existing (no sigmoidocele), I wonder if the 2006 surgery was done for non-surgical issue of nerve-transmission issues with my colon, rectum, and so on from the undiagnosed pernicious anemia. SURE wish I'd seen this doc prior to my 2006 surgery or I would not have had it. THis whole thing is such a retrospective puzzle. Stuff I had not diagnosed, wrong diagnosis done involving anatomy, wrong surgery, done wrong, no f/u, maybe incomplete rectal empyting was not anatomical after all. good grief.

Well off to a nap with the cat then more packing.

Hang in Hodaya, keep walking even if you feel nauseous it will help you get that ileus gone faster. Rosemary
Posted 7/12/2010 11:18 AM (GMT 0)
Hi ladies,

just checking in how Hodaya is doing. Hope each day gets better and better (it should!). I too get ileus with every surgery.. awful! They did give me the same medication Tracy took started before I went into the OR. It's suppose to help wake your bowels.. but even with that - they didn't wake up till day 6, however, I didn't vomit - thank goodness!

Lizzie, my prayers are with you, just don't know how much you can take, as I know your life has been turned upside down for way too long.

Rosemary, that's interesting about your pernicious anemia. I know you struggle with the issue that your lost your colon due to bad medicine, and there is no getting it back, but what a blessing you are to all of us here.. always offering support and comfort! Hope you have a wonderful cruise!

Janie, I'm glad the Coolatte's are still working! Amazing! The Miralax does the same to me, makes it so I can go, but I go just small amounts, very frequently (and often sudden).

Judy, so glad your having a great vacation - enjoy!

Lots going on.. DH has a pre-op appointment on Wed, and Friday he will go and have his biliary stent removed.. hoping he doesn't get an attack again! Thursday is my pre-op with my doctot, and next thursday - another pre-op at his office and pre-op at the hosipal.. I'm so busy with other things, this is approaching very quickly!

Val, when are all your pre-op appointments?
Posted 7/12/2010 4:13 PM (GMT 0)
Jenise, I must have missed something....what is wrong with your husband?

Also, my doctor didn't say anything about the mesh during my surgery...he did say I had ALOT of adhesions, but he said I was actually born with them and he thinks they contributed to my digestive problems over the years. You have no idea how happy I was when my family, my husband, my mom, and my sister all had to hear that from him after surgery...because remember, I have been accused of having an eating disorder for YEARS....

I been working on my profile so everybody can see what my diagnoses are and what surgeries I have had....do ya'll think this is good enough?
Tracy
Posted 7/12/2010 5:23 PM (GMT 0)
Jenise,

Thanks. I sure hope I stay OK. With all the misdiagnoses and lack of diagnoses I figure there must be a reason I'm still here. Hope so.

I changed my bag this a.m. then ate breakfast. Then had only gas output and then it was like 2 and a half hours before I had any ileostomy output. I was getting really nervous. So today I am working on getting mucous out of my colon and rectum, what a project that is.

Tracy, Love your profile. God willing I will have an interesting one, but have to wait til suit is settled then I want to do a real doozy!
The Take-Down TBA could be amended to OR NOT! Depending on how convenient you find your new plumbing. I was scared this a.m. when no output for 2 and a half hours. Oh, lord. All I could think of was the person on here who had a spontaneous ileus out in California while visiting. Oh Lord! I'm sorry I do not remember who it was.

Lizzie, I wish you all the best.

Hodaya, hope your guts wake up. Ileus is soooo scary, though post-op totally normal.

Val and Jenise, all the best on your surgery.

So now I know why I did not pursue beyond the 3 colorectal consults and did not think to send my original scan away to other radiologists, or to look in court houses for docs' suits back in 2006, I was lucky to even be functioning. BUT if the pernicious anemia had not slowed my brain I might have thought to do all that stuff or at least enough of it to be guided away from that original surgery. Unreal.

Anyway, gotta keep packing and getting rid of rectal mucous. I chickened out on having it suctioned out this time as it does hurt and I had spent all day getting that CT enterography to see if my small intestine was all open (luckily it showed it was), but I had had enough for that day. BUt a good suctioning is painful but in the moment and soooo quick. This mucous extraction I do takes hours. Oh, well.


Rosemary

Post Edited (esoR) : 7/12/2010 11:27:28 AM (GMT-6)

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