TOTAL COLECTOMY PART 36

Thanks Judy- I feel very blessed to have been directed to this website (Thanks again, Always ;-) and I am sure more ?s will come as the time approaches. I appreciate the heads up re the diet was well as getting someone to clean the house. Will have to hire someone to do the yardwork as well. I just hope I can go back to work in a timely manner. I have a desk job with no lifting. I am planning to be in the hospital a week or less and then home a week and then try to go back to work. I only have 4 weeks I can take off and that has to cover my sick time and holidays for the rest of the year. If I have to I will use it all but I am hoping two weeks minimum 3 weeks max will do it as far as being down. I am sure it will take much longer before I am full steam ahead again and that is where I am going to have to watch it and pace myself physically, as well as sticking to the diet ;-) Thanks again and will try to remember all the tips you all have given me ! I hope to be posting a really good praise report when it is all said and done !

Hodaya, just try to use more warm water and hold as long as you can....the hard ball is just a mucous ball I would think....

I don't like having to rid the rectum of mucous. :( It is just another step that involves using my useless rectum! WAH WAH

But, I don't seem to have very much mucous when I use the enema either. It is the rectal pressure that makes me do the enema in the 1st place, then there is not much mucous...I am guessing the mucous is probably stuck up there somewhere. EWWWW UGH

Hodaya and Tracy,
It must be so discouraging to still have problems with your rectum when you don't even use it!! The rectal pressure for me is the worst....that's when I have to use the warm water enemas. I do what you did Hodaya, but at least for now it makes stuff come out for me. I wonder if the mucus is just too high up for the enema to reach? I used to feel the same way you do about enemas; now they're my best friend!:)

Rectal mucous saga continued.........Every so often I get huge rectal abdominal pressure. THis is gross but while I eat breakfast when that urge comes I just put a paper towel under my butt, tip to the side and poop out about a cup of mucous. But after this starts, then I pass mucous all day long. Having to sit, tip to the side and drink coffee. Feels good to poop out something in the old way. Just like the good old days. Keep in mind I'm pooping mucous through a right angled scarred rectum and a 4 inch stretch of scarred colon that has no muscle tone in that 4 inches. Don't know how I do it. But some ability must still be intact.

THen I think there is more, go to my surgeon for a mucous suctioning, and he finds very little though it feels like a ton. This I cannot wrap my head around. Though I figured out my entire law suit. I think my brain just shut down when it comes to this whole mucous thing. As Janie says, so discouraging to have to even use our rectums when we aren't using them. Well put Janie! Rosemary

Hodaya, my doctor wants me to do a warm water enema twice a week to try to get the rectum to work....it is just amazing that both of us, who never had an urge to poop, get this rectal pressure from a tiny piece of mucous....that is just not normal. :)

It is weird because I get the urge in the morning too, after eating breakfast. And it may come and go through out the day, but never stays for long. I have also noticed if I pull up on the rectal muscle, that this will sometimes make the rectal pressure stop...have you tried that?

I am thinking these feelings will get less and less as time goes on and we just need to be patient....hmmm, somebody that posts on this board had a temp ileo for 8 years, but I can't remember who, or else I would ask her about this rectal mucous issue. UGH

The pain above my stoma is getting better. I think it was from over exercising???? Today when I walked on my treadmill, I wore a belly band to help hold the bag closer to my body, Summers suggestion, and it really helped. I think the muscle above the stoma is tired of the bag constantly pulling and tugging when I walk too fast. It also is sore from when the bag fills up and that adds extra weight. I ordered a belly band from ostomysecrets because it has a pocket for the bag.

Other than the pesky pain, I am doing really well. I go back to work in a little over a week and I am actually getting excited. I am ready to get on with my life and hopefully when I am working, I will not be able to obsess over every single little twinge that I feel. UGH My ostomy nurse did say it takes a year for our bodies to fully recover...

Hi Ladies,

 

Lots of prayers for Lizzie...she was admitted to the hospital tonight for suspected abscesses. Her pain had been getting worse today, so she went to the doctor, they did a CT, found suspicious fluid collections, and they sent her to the hospital. Her white cell count was maybe a tiny bit high, but ok, so if there is an infection, they caught it early. Thankfully! Her hemoglobin was also back up to normal, so that is good news too. Pray for wisdom for her doctors, that they would get this all figured out and resolved quickly. They did open up a couple of her staples and fluid drained out...but other than that, at the moment, they're keeping a very close eye on things. Keep those prayers going for her!!!

 

Have a great Friday! Love and prayers to you all!

 

Allie

Hodaya - I started to relearn to walk over two years ago and am now able to use crutches or a walking stick for short distances, but still need the wheelchair for anything more substantial e.g going round a shopping centre. Before having to put the voluntary work on hold, I was helping at a charity that cares for severely disabled children and young adults. I'm waiting to hear back from the charity about what help I can now give them as the structure has changed since I last went there, or I'll change to something else. In a few weeks I'll be starting a sign language course, only one evening a week, but it's still something new in my life. I'm not married and it's been a while since I was in a relationship because of the M.E. Hopefully, we'll both meet someone in the near future :) I know it's hard to get started, but you're right in saying you will only go downhill. Things get to me at times, but most of the time I see the glass as being half full and not half empty. Your experience of enemas sounds very similar to mine. After the bm a couple of weeks ago, neither the warm water of Fleet ones have done any good apart from helping with the mucous and bits of faeces.

Tracy - Good to hear your pain above the stoma has improved, and you'll soon be back at work. I've been told the rectal pressure is mainly because of the tightness caused by the spasmed muscles. Like you, I sooo hate doing enemas.

Allie - Thanks for the update on Lizzie. Still praying for her.

Post Edited (Cookie74) : 8/28/2010 4:32:09 AM (GMT-6)

When I had my ileostomy I had frequent pressure in the rectum too.  My Ostomy nurse suggested I use glycerin suppositories.  They worked really well for me..kind of made the mucous slide out!  Just my input...hope it can help someone!

Hey all,

I'm finally weeding out my house one room at a time. With all the trauma I went through since 2006, then putting together the suit, then all the travels, it's been 4 years since I've weeded and tossed stuff at my house. I'm not a hoarder or anything, but stuff really added up. I've got 10 bags ready for trash after cleaning only two rooms. I got so into it I was down on my knees chasing dust bunnies under beds. I sure hope my stoma is OK from all that. Seems to be. Had to have ice cream with Bailey's Irish Cream to keep me going. It's back to 90's here in Mass. Indoor in the AC chasing dust is good.

Hope everyone is having a good weekend. Hoping Lizzie is OK. Anthony is back to his career. Yeah!

Rosemary

hey Rosemary, everything's alright with me. how's the weeding going?

i just tried coloplast for the first time on Friday, it's been on me for 3 days now. i think their wafer is better than hollister's, but i like hollister's bags better. also, hollister's floating flang is easier to manage.

for some reason, in the last 2 days i've been having TOO MUCH air. ever since the colectomy ayear ago i never had much gas and i don't know what's causing it the last 2 days.. my bag fills up with LOTS of air like 3-4 times a day, really anoying and i have no idea why. i'm not used to this.

i also have to find another job, after working in the same place for 8+ years.. maybe it's for the better, cuz i didn't like typing all day either, so maybe i can find something more interesting. but looking for work is the hardest work.

Hey, I am here too. It has been so quiet around here and I hope that means we are all out living our lives. LOL

 

Rosemary, it is good that you are cleaning out your house. I have also been cleaning my butt off...my house has been very neglected for the past 2 years or so and I am trying to go through each room.

 

I also worry about my stoma, but my doctor basically gave me the okay to resume all activities, including lifting stuff???? Not sure how heavy, but in order for me to go back to work he had to agree that I could lift 30 pounds. Not that I ever have to lift 30 pounds, but I did have to carry a sick child off of my bus last year and he probably weighed 40 pounds....but that is not common!

 

Hodaya, I hated the coloplast. It felt bulky and heavy and it seemed too tight and did not move well enough for me. I could constantly feel it. I like the convatec moldable wafer the best because you can mold the wafer around your stoma and it then swells up around the stoma and this provides excellent protection from leaks. BUT, I do not like how hard it is to snap the bag onto the wafer, so this alone has pushed me back to Hollister! I wish we could interchange the products, don't you?

 

I am doing okay. I am still not smoking, which is a good thing, but I sometimes feel like I am at war with myself....it is a horrible addiction and I guess after smoking for 25 years, that the battle within myself wanting to smoke is going to be an issue for several more months yet. This, in turn, has caused some depression off and on. I hate that!

 

I went and saw my general practicioner Friday and she said the skin swelling over the stoma is normal. She also did alot of blood work to check my electrolytes, vitamin B12, Vitamin D, cholesterol, etc. They took 6 vials of blood, so I assume they are checking everything out thoroughly.

 

I am glad my doctor gave me some extra time before going back to work because learning to deal with an ileostomy is alot of work. Luckily, I am learning something new everyday about which bag to wear, which clothes are the most comfortable, and what NOT to eat or drink. So far, coffee with cream and sugar has caused me the most issues.

 

I drank a large coffee from Dunkin Donuts with heavy cream and heavy sugar and a few hours later, my bag filled and filled until the output was light yellow water. Me and my husband were terrified.  I actually thought I was going to have to go to the ER for IV fluids. I guzzled 32 ounces of water, ate bananas, and took immodium and this stopped the diarrhea.

 

Me, with diarrhea???? WTH?

 

Even with all of the challenges though, life with my ileostomy is good.

 

I go back to work next Tuesday.....I am scared, but ready to get on with my life.

 

Hodaya, why are you changing jobs?

Hey Judy,

Good that THIS year is starting better than the past 7. SOrry you lost your arbitration.

Tracy,

In cleaning, I am using a swiffer to get up all the dust bunnies; am not vacuuming. I'm pulling some trash bags but a neighbor actually lifts them out for me. I'm not even close to lifting any more than my 10-lb cat and now I have little stairs she goes up so I can feed her on a table so I don't have to bend over.

So am being REALLY cautious, but it just feels so good to get down and clean. I really worry about my stoma with all the moving I've been doing, but it just feels good to move as much as I am. Athletes have stoma's and do a lot more than us. But I still worry. In cleaning do you get down on your hands and knees and reach under beds to sweep dust?

This is the action I am most worried about. The last thing I want is a peristomal hernia.

Hodaya, Glad I put out the too quite all-call. We were all likely wondering, where did everyone go?

We gotta meet sometime, all of us!

I wonder how Lizzie is doing. Allie, if you check in let us know.

Rosemary

Hi ladies,

I'm still here, and I have noticed how slow the postings have been. Funny, at times I can't keep up with everyone and other times like this.. I feel there are only a few of us!

Judy, love seeing you back on here! Hope the new year goes smooth for you and your students. Sorry you lost the arbitration and now need to pay back the school, seems so unfair! Praying for a healthy year!

Rosemary, doesn't it feel great to clean out all the old junk! I've moved a lot and and built a few houses, and sometimes between selling and building we end up renting. It always amazes me how much junk we collect in a short amount of time! Somethings I have a hard time throwing away, but I pretty much am able to part with things, but I do find DH always looking through the bags.. LOL, he is afraid I'm throwing all HIS stuff out!

Tracy, I'm so proud of you for still not smoking! I promise you, it will get easier and easier.. and it will be one of the best things you can do for yourself. Even our not poo'ing won't kill us, but smoking will. I'm really proud of you! Glad you got some extra time off work, I'm so blessed I no longer have to work.. makes all these recoveries easier to deal with.

Hodaya, sometimes change is for the best, and maybe this new job is just what you need! Keep us posted in what you find, but I'm sure any employer will be blessed with having you!

Anyone hear anymore about Lizzie?

I'm doing really great post op, it has been by far the easiest recovery physically. Still restricted to no more than 5 pounds, and I'm doing the best I can with that.. but it really is almost impossible unless I was in a strait jacket or something! My hardest part though is the instructions of "no straining". I'm really just having the hardest time eliminating the waste.. just is still stuck. Not sure what the next step will be, but not straining .. is almost an impossibility too. I go back the 9th, and I'll be interested in what he says.

Hope you all continue to STAY HEALTHY!