TOTAL COLECTOMY PART 28

Judy - I am hanging my head in shame. Today I was tempted and I broke....I ate 1/2 of a pink grapefruit.  It was so good. I felt like Eve in the Garden of Eden so tempted to eat the forbidden fruit, and like Eve, I fell into temptation.  The consequences are so bad! Oh how I regret eating that delicious fruit.  My butt is in agony.    

 

I have learned a hard lesson – listen to Judy when she yells “LOW RESIDUE.”

Amey,
I feel your pain, I hate butt burn. Eating 1/2 grapefruit won't do it for me, but chili and hot sauce definitely do. Also, when I drink prune juice I get terrible butt burn.

I just paid $6.33 for a very large container of miralax with my insurance. The thing is my surgeon told me to take 2 tablespoons a day, but if I do, I will run out much sooner than the number of refills are for. Is it ok to take every day? I tried today taking less and I had to use an enema. It's so strange. It's so discouraging to have to still take something, but honestly it never worked before surgery, so I guess that's good.

My doctor said my small intestine was working fine, but my pelvic floor problems are why I can't get the poop out. Does the miralax just push things through with so much force that it comes out? I don't understand it at all. Honestly, within 5 minutes of drinking miralax, I start going, but it isn't like with other laxatives when I used to take them. It's also easier on my butt than the prune juice. Amey, do you still drink prune juice most days? That is, when you don't eat grapefruit:)

I feel guilty even complaining after reading what some of you have been through. I sincerely hope, Peltzier, that you and your friend can get some help.

Jen...where are you?????

Amey,

Ouch! Am saying that on your behalf, no more grapefruit OR salad for you! Diluting the gatorade is a good idea as it is so sweet it just makes me lose more effluent. I feel like I'm in the Sahara Desert.

Jen....report in if you can; worried about you.

Rosemary

pelz, i'm so glad you're already in touch with her! that's awesome!! gosh i really hope she can gain some weight soon enough, cause really, the waiting is not good for her either and the longer she stays like this the more probs can get worse. i was wondering.. when someone is fed only through the vein like she is, they're not supposed to have any output (normal bms), are they?? i mean is it possible something will pass through?? just so curious.. anyway, i spoke to her maybe once on this board, but i doubt she remembers me.. but in any case pls tell her i said hi and that i care about her and praying for her, o.k? GOSH so worried about Jen.. i was hoping she'd check in by now, i wonder what's going on. Amey, if i eat any fresh fruits or veggies i'd get the WORSE butt burn there is!!!! i'd be screaming with agony and tears with each bm. when i was 3 weeks post op the hosp's nutritionist told me i can try fresh fruits and veggies and that surely was a huge mistake.. NEVER AGAIN!! hope your poor butt is better now ;) lol Jenise, my goodness, it's getting closer so fast isn't it? and i'm so excited for you! before you know it, you'll be rolled into the OR and hopefully will be the start of a better life for you, hon! i'm able to keep my diet most of the time, but only yesterday i ate just few bites of potatoes, it was like maybe 3 spoons and i got REALLY hard stools just from it. i wasn't constipated yet, but it made my stools really hard. i havn't had hard stools in a while and when it passed, it was so weird to feel it go through the rectocele first and then part of it reached the anus and came out, but maybe half of it still stayed in. after an hr or so the other half passed too. so im just thinking, maybe it's better leaving it as it is.. it just takes some more time for the rest of it to come out. maybe it's better to avoid repeated surgery to fix the rectocele and just live like this, with mutiple bms till it's all out.. i don't know, but maybe with all the staining it's bound to get worse over the yrs, so maybe it IS important to take care of it on time. will see after i do the defecogram and consult with some drs. hope everyone is well... Judy, Lizzie, Marisa, Christy, Janie.. and everyone else, love you!

Hodaya,

From my experience with divided bowel moves, if I had it to do over, I'd keep my original problem in a heart beat. But that was just my experience. Neither my medical case reviewers nor my atty who was a GYN doc for 35 years have yet figured out what my original issue was, they just know all the things it was not.

Everyone,

At this point, I am beginning to fear the worst about Jen and I try not to think about it. But who knows, maybe some family crisis came up and she's busy taking care of someone else. We can only hope and pray for her well-being, as we all are.

Rosemary

Hodaya, you're still straining really hard? I am too, and I hope the surgery helps it some. I actually have to push up on the area between the anus and vagina - that's called "splinting" and it does help me to empty the stool that is stuck in the rectocele. But I totally understand the straining part!! It's awful.. and it is not good for us to be straining like that. My uro-gyn said for me to leave it at this point.. until after surgery.. I know that they say sometimes it will not progress ... IF you control your diet - so you DO NOT strain! The straining will eventually make it worse.. but it really could be years...... If you recall, I'm 48.. and had the damage done with childbirth 21 years ago.. it wasn't until I started peri-menopause.. where my estrogen level is not the same.. it became much worse.. and I developed the rectal prolapse too. In any event - another defecogram and 2-3 opinions of independent doctors.. may not be a bad idea. A big part of why I'm having surgery is the excessive straining... which they think is more because of the twisting and flopping on the rectum.

I'm getting excited/more apprehensive each day! I just feel time going so fast because we have 2 big holidays (Thanksgiving & Christmas). I'm busy preparing for those.. and that makes the time fly!

I'm sure worried about Jen too. I'm so glad she did decide to go to the doctor and have things checked out.. but I fear she may have ended up back in the hospital.

Oh Lizzie!! Thank you for getting that update! I was afraid something bad must have happened, and I'll be sure to sending prayers her way.

Jen if you get to read this ((HUGS)) thinking and praying for you!

Lizzie,

Good work! Thanks for the update on Jen. Good thing she got to the hospital. Sounds like she may have had a leak at the anastomosis, peritinitis, and been rescued in the nick of time. Wow!

(The only reason I'm venturing to guess what happened with her is that these were the identical signs of a woman who died and whose heirs sued my 2 original surgeons; these 2 docs ignored these identical symptoms and the woman died. Didn't know about this of course when I went to them. Glad Jen was in better hands.)

Prayers for Jen.

Rosemary

So worried about you Jen.  I am praying for you and your family too.

Amey, Amey, Amey, What were you thinking??????? Grapefruit?????? I used to eat a grapefruit everyday before my surgery and yes it's hard to see things now and not eat them but when I look at them, I think of the many people on here who have suffered horribly with obstructions and ended up in the hopsital with additional surgery and NG tubes, etc.  There is NO FOOD worth eating that might possibly cause this to happen to me.  Try to think about people on here the next time a certain food temps you.  Okay, enough lecturing; I hope your butt feels better soon and am VERY thankful everything passed through your system without getting obstructed:)  Be strong:)

Janie-So glad the miralax works:) You can take a lot of it for long periods of time without any ill effects on the body; before my surgery I took 4 capfuls a day for 3 years.  If you need any, let me know, my GI gave me 5 refills (I have know idea why, I've only used it twice since my '08 surgery) and I don't pay anything for it.  I can send you a bottle whenever you need it. Love you:):)  

Lizzie-So happy you have a great PT working with you:)  Didn't read back too far to know what all is going on but only know you deserve the very best. Hugs and Love to you always:):)

Hodaya-Hope you are using the miralax type of med. to help get things working.  Miss you and love you. Hugs to you girl:):)

Jenise-Only a couple of more weeks then you will be on the other side like the rest of us.  Try to relax (like that will ever happen lol) a little before your surgery and take at least one day just for you.  Know that you are in my prayers and I'm thinking about you daily. Hugs and love to you:)

An update on me-nothing really new.  Stent still VERY uncomfortable. I don't remember if I told you or not but my dr (urologist) & I talk weekly and he's already ordered a new type of stent to hopefully ease the spasms.  He wanted to see if could take the stent out altogether but I said no because if the tube closes & he has to do emergency surgery then I will have to miss work again so he agreed to replace the stent every 3 months as originally planned until next summer.  My superintendent is drawing up papers for a payback plan for my missed work (7,000.) when I was so sick in May & June; when I get them then I will file a grevience, not a fun process.  I also just got a letter from Social Security saying I owe 4,000. from benefits I got from my ex.  Merry Christmas to me; mind you we have been divorced for 12 years and they are just giving me this letter???????  The Lord is surely putting me through many tests rights now although He knows I can handle them.

Our daughter will be home the 9th-16th so we will be celebrating our Christmas with her on the weekend she is home; this next week will be very busy decorating and getting things ready for her visit, can't wait to see her:):):)

I haven't had a chance to call Shmuel but plan to this weekend; I will let you know how she is when I talk with her.

I truly miss talking with you all everyday.  You are my "real" family, the one I can truly say anything to and who is there beside me all the way.  I love you all and wish I could be on here more.  Please know that I do think you all of you each and everyday and pray each day for all of you.

Peace and prayers to all of you; and Hi  and well wishes to those of you I didn't personally address,

Judy

Welcome Stacy,

I had surgery in Orlando in March. I've never heard of Dr. Redan; is he a colon surgeon? I went to the Colon and Rectal Center and had my surgery at ORMC. Is that where you're going?

There are so many on this site who have had surgery for constipation. My entire colon was removed, but unfortunately I'm still having trouble going. I'm taking miralax daily now and it's helped alot, which it never did before surgery.

Judy,
You're so sweet. Thanks for your offer, but shipping the miralax would be more expensive than buying it at the drug store! I think my Dr. will give me more prescriptions, I just need to ask. Even if he doesn't, I can get it at the drug store. Thank you though. I'm sorry about all your issues now; when it rains it pours, doesn't it? You have such a great attitude. I hope you have a great "Christmas" with your daughter.

Hodaya,

You still have to strain so hard? I still strain, but with the miralax it's much much easier to get out. I do still get some stuck in the rectocle and have to use enemas every few days. It's ok, but certainly not what I had hoped for. I'll see what the Dr. says in January when I go back, so I'm not sure what I'll do with the rectolcele then.

Lizzie,
Thanks so much for the update on Jen. Jen, if you're reading, I hope you have a speedy recovery. Sending hugs your way!

Jenise,

Won't be long now! I know having your Christmas shopping done and everything wrapped makes you feel better! Jut think, pretty soon you'll be better than new!

Everyone else, hope you're doing well. So much to do to get ready for the holidays, but I'm always thinking of everyone!

Hugs,
Janie

Lizzie, thanks so much for updating us! GOSH Jen, an emergency surgery!! poor thing, i'm so so sorry. it does sound like as Rosemary said, a perforation.. i hope and pray your drs are able to locate the exact place where it perforated and take care of it as best as possible.. oh my gosh, i bet you're having the worse time now, hang in there, we're all praying for you honey. there were other ladies here who had this complication and now they are just fine! so you can keep optimistic things WILL be o.k!! we love you very much and care about you!! waiting to hear about your progress. Jenise, yes, i do remember your age and all your story. i know the straining is not good, but i have no choice, if i don't strain, there's NO way it'll come out.. and i just CAN'T leave it in.. oh no!! well that's why i want to have tests done, but i'm scared that if it's anismus, there's not much that can be done.. )o: i've already tried biofeedback prior to surgery and it did nothing as far as the straining part, i mean when i took my laxatives and finally felt the urge, i still had to strain real hard, well actually then it was harder than now. i hope your surgery eases the straining part significantly for you, but if you will still have issues, then maybe you should consider the STARR procedure, but if you have a large rectocele the STARR is not good for that, it's good only for prolapses and small rectoceles. Marisa, oh my gosh, i'm glad you feel better now, but i think it's also necessary for you to still go to the dr, just to make sure everything is alright. so please do, o.k? hope you keep feeling good! Rosemary, i cannot believe these two horrible surgeons..... how many mistakes will they still do till they have their license taken away from them????? how many more victims???? it's truly unbelievable!! anyway, i've heard of lots of ppl having the same simptoms as you had (mostly women). it's an incomplete evacuation and the most common reasons for an incomplete evacuation are: rectal prolapse, rectocele, enterocele, anismus. you probably had some degree of one/some of those. the first test you should have had was a defecography. this test can show exactly the anatomy of your rectum both at rest and while straining. it can show what exactly happens in there while you have a bm. anyone who's a bit familiar of bowels issues (like us little ladies) knows that!!! so THEY didn't know????? so furiousing!!!! (if there's such a word) well i'm amazed you didn't even have to strain!! you sure did have some kind of an obstruction within your rectum, but i think that the fact you didn't get to the point you had to strain meant it wasn't so sever yet. it sounds like as though there was a wrong angle there and that's why the stools couldn't pass. of course i'm just assuming.. but occording to your descprition, the angle there wasn't right and it blocked the flow, so you had to do manuvers to get the stools pass the blocking angle, so by moving around it helped the stools pass the angle, but that's why it took you so many hrs to empty. it could be it was some level of anismus.... but i really can't be sure of anything, that's for sure! most drs would have sent you to biofeedback first and if that didn't help they would have considered other approaches according to the diagnosis of the defecography, like if it was mostly anismus, they'd try bottox injections, but other than that, ther isn't much to offer for anismus. if it was a rectal prolapse/rectocele/enterocele, it could be a surgical approach, depending on how sever those were.... all assumptions. BUT apparently, by creating a temp ileostomy, the anismus calms down significantly, as we all know, thankfully happened to Lizzie.... oh i so hope it just keeps imrproving for you, Lizzie!! so sorry my dear, i guess you'll always have that question mark thinking what was it really...., i wish there was a way to know. Judy, you're amazing, honey!! with EVERYTHING you're going through, you're still so positive and encourating AND good advice to all of us!! love you so much and really hope everything works out for you at last. enjoy your time with your daughter!! :o) WOW this post is getting too loooong!

UPDATE ON JEN:

She had a PICC line placed today and is getting abx and TPN/LIPIDS for nutrition. Said she has been very sick and does not know when she will come home. Thinking of her and hoping she recovers quickly.

Hodaya- I am so sorry you are straining so much. I know you did not have luck with your PT before your TC, but either did I and it wasnt until after my ileostomy that it helped. Its worth trying again. I know it sucks. I have to go twice a week and i am not looking forward to it AT ALL!!!! I am just hoping it will work for me. I did not have MOM yesterday and was able to go twice alone, but could tell I had more in there.

Judy- Thinking of you....love you so much, you are too sweet. I know you can handle these trials. Your so string and admirable. I hope the placement is uncomplicated and the new tyoe eases the spasms.

Amey- hope your feeling better from the grapefruit!!!! shame lil lady.

Stacey, Welcome. If you have any questions I am sure we have them.

Everyone else I love you and am praying for you!!!!

Lizzie (iwill ke trying to update you if i get one)

Hoddaya,

I thought once again about your concerns of having dysmotility in your small bowel as well.

I think one possibility to find out more about your transit is to carefully observe what's your poop like.
A relatively safe way of estimating bowel transit is to eat ground poopy seed in small !!!! amounts.

It doesn't need much to show the results. Normally you will easily detect the poppy seed in your stools.
Poopy seed has some kind of fiber, but it is insoluble fiber and this kind of fiber is not as bad as solulable fiber for the transit. In fact, people who tend to have loose stools shouldn't eat insolulable fiber since insolulabale fiber normally accelerates the transit whereas solulable fiber slows it don by absorbing water from the intestines.


Do you have an idea what your small bowel transit is like so that you can see the results? However, you should consider that if you have major outlet issues the transit could be prolonged because of the stuff remaining in the rectum, not in the small bowel before coming out.