HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 23

Support Forums
>
Ostomies
✚ New Topic locked
1 2 34 5 6 7 8 9 10 11 12 13
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/11/2009 3:09 AM (GMT 0)

Hi Hodaya, Amanda, Lizzie, Janie and Many Newcomers,

Just wanted to update what is going on with me; on Tues I will be having surgery on my kidney to finally remove my tube after  5 weeks and to find the blockage in the kidney.  Will have to stay overnight due to the c diff infection and having to go on antibiotics from the kidney surgery; praying for the best.  Have been out of work since May 6th and won't get to finish the school year with my first graders, very sad, but hopefully will be well enough to go see them before the last day of school.

Again, I cannot stress enough that if you've have a colectomy to please make sure your dr checks with your gi dr or surgeon before putting on antibiotics for any type of infection; my whole situation could have been prevented if my previous kidney surgeon had done this.

Lizzie-As always you are in my prayers and I'm always praying that you will find the right drs to help you.

Hodaya-You are such a source of strentgh to al of us; I hope and pray that your drs will make a decision so that you can finally live a fulfilled life.

Amanda-Praying that you do not have an infection and will recover quickly so that you can get back to your new business.

Janie-Hope everything is going well and praying that your blood clot is uncontroll.

Marisa-So glad to hear you are doing well from your surgery; try not to do too much too soon; take the time to let your body heal.

Take care, prayers, hugs and love to you all,

Judy

Posted 6/11/2009 4:30 AM (GMT 0)
Judy,

I'm on and off the boards so much that I didn't see your original post about the c diff....what antibiotics were you on that you shouldn't have been?  I'm asking because I think I may have a urinary infection, and if the sample comes back that I do, what should I not take? 

Good luck on Tuesday, I hope everything goes well and this is the last setback you have!

Hope everyone else is doing well.

Hugs, Janie

 

Posted 6/11/2009 5:21 AM (GMT 0)
good luck on Tuesday, Judy! i hope all of these issues resolves for you now, you've been through so much.
i'll be praying for you too!
keep us updated. love you!
Posted 6/11/2009 5:56 AM (GMT 0)

Hi Janie,

I was given Keflex, first very high doses in IV form; this is what caused the c diff.  It likked all the good bacteria and let the bad bacteria take over.  Make sure your dr is aware of your colectomy and if you start to get severe D as in I'm talking not just frequent but just water, call your dr immediately.  I did this several times and was told it was all part of my kidney surgery so it progressed into severe dehydration and c diff that landed me in the hospital.

I hope everything works out for you and you don't have an infection.

Hugs,

Judy

Posted 6/11/2009 1:32 PM (GMT 0)
Thanks Judy.  I have taken keflex, also cipro.  I'll see  what happens, but I'm really starting to feel like I might have one. 

Again, good luck on Tuesday.  Are you nervous or excited to get this behind you??  I'm so tired of doctors; I'm sure you are, too.

Lizzie, what's up with you sweetie?  How have you been feeling?

Hodaya, How long do you think you'll have to wait to hear back from your doctors?  Have you been able to have bms much all this time?  I saw my internist yesterday about the blood clot, and he said "well I guess I won't have to write constipation again on your charts!".  I told him I hope not.  I would say 80% of the time I feel great and don't have any problems anymore, but sometimes (like yesterday afternoon and last night) if I eat too much, I can start feeling backed up.  It's actually all in what I eat, I think.  Chocolate doesn't make me go, instead it stops me up!  Same with cake, etc.  Yesterday I had both and I've felt like I had to go and have only gone little bits a few times.  All in all, it's so much better, but I'm hoping this feeling of having to go and not being able to goes away for good one day.

Have a great day everyone!  It's another beautiful sunny day here in Florida!

Hugs to all,

Janie

Posted 6/11/2009 2:59 PM (GMT 0)

Judy....Good Luck honey I am thinking of you and praying for you....you have been through so much. C-diff is such a nasty bug.

Hodaya- Thinking of you today....cannot wait to hear what your psych doc says. They have to get you in for surgery. This cannot go on any longer.

Janie- I am "ok" and that is exactly how I am. I am still waiting for approval to go back to Cleveland. The waiting is eating at me. I am very depressed and going to ask our psychologist at work if there is anyone they think can help me becuase my thought are not good. I can put on a fake smile and I did all weekend, I laughed, but inside I am not me. I feel for my husband and most of the time I just sit and do not say anything. My best friend called my husband and said she is extremely worried about me and how I am caring for myself. I got the eating lecture, but I am still nauseated. Pain is better.....I am also depressed, whcih makes me not want to eat, and then i have no energy. Just a viscious cycle....I am maintaining at 101-102.

I am glad you are continuing to do well....its so sad. I am so envious of some of you all. I wish I could just be somewhat fixed....physically I am "ok", but mentally I am fading fast.

Love you all.

Lizzie

Posted 6/11/2009 8:46 PM (GMT 0)
what's going on, Janie? i see you're taking antibiotics.. what do you mean you're starting to feel like you have one? one what? gosh i got the impression it's only nothing and resolves on it's own, i must have misunderstood it all.. and what about the blood clot? i hope things are taken care of easily and quickly. keep us updated on that.

i'm o.k, the laxatives are still helping me, not nearly as they used to, but still o.k. i'm taking them every day now and if i spend my 5-6 hrs in the b/r every morning, then i should be o.k, depending i dont eat anything else during the day, and if i do, i must be aware of the fact that short while after i'll be in a lot of pain. i'm having all kinds of new feelings of pain, on my weists and in my left and right colon, and my lower abd is so uncomfortable lately.

so like for 2-3 days i eat only breakfast and then nothin during the day, but then on wednesday i cant help it anymore so i eat something more than just breakfast, and then i'm sooooo miserable, but that's life. the gas is having hard time to come out too on it's own and i have to push it out, but even then not all of it comes out.

i'm glad you're doing so much better now, but you said: "I'm hoping this feeling of having to go and not being able to goes away for good one day" do you mean you still have that feeling?

i really hope everything works out for you, please keep us posted about the infection and everything else. love you!

i tried to reach the psych on the phone today, left him a message, but he hasn't called me back, he'll only be back on sunday, so i can try again only then. yes, i know, it cant go on like this. i'm having bad vibes about these drs, i think i want to go for a consultation with that dr who had his training at cleveland clinic. did i already mention that i'm sooooooooo tired....? but i guess that maybe i'll have to start all over againg with a new dr, i dont know, i hope i'm wrong.

Lizzie, thank you too for the chat, i so enjoyed it. it really did me good to talk and you're simply helarious about coming over here and.... hahahaha i'm still smiling from that lol  tongue   love you!
Posted 6/11/2009 9:48 PM (GMT 0)
Why do you have to talk to a psych doc? I thought I was the only one that spent hours on the toilet everyday until I found this room. I guess I am not unique and one of a kind like I thought. HEEHEE I hate that you have this problem, but it makes me feel better to know that I am not the only one. What laxative do you take?
Posted 6/11/2009 10:43 PM (GMT 0)
hey Tracy, i also used to think i was unique and one of a kind till i found this forum and was so thankful to know there are others in my same condition. sure it's comforting.

well, about seeing the psych.. the story is this, a yr ago my gi said "i guess we're going for surgery". on one hand i wanted it, but on the other hand was still SOOO scared, i needed more time and was fluctuating between yes surgery or no surgery.. and kept asking myself and EVERYONE (i think i drove everyone nuts about this) around me all those questions, like - is it really the right thing? what if i end up worse? what if there's still a very certain formula i just still don't know about and it can help me w/o surgery? what if i just eat liquids? what if i eat only ensure plus (lol, i really thought it's a possibility, silly girl) and lots and lots of more "what ifs" - it was all anxiety and deep down i knew there's nothing out there to help me, but surgery. SOooooo, my gi couldn't not noticing my anxiety, so now he wants to make sure i'm emotionally reayd, i keep telling him that now i'm ready and all, but he has to have the pro's approval that i am and make sure i won't fall appart emotionally post op. i can assure y'all, i'm a strong brave gal and can handle it! i'm so over my anxiety.

one more thing was the fact that he wanted me to take pills for depression and anxiety and i totally refused, cause eventually i always handle things w/o pills, even if i have to be a nervous wreck for a while, so b/c i didn't want to take the pills, he felt i should at least be evaluated by the psych just to make sure i'm strong enough emotionally.

well the psych confirmed to me that i'm sane... lol! and he also said that after hearing my story, he would have expected to meet a very suppressed and bitter woman, but was surprised to find a very nice and pleasant one.. well, i don't mind the comliments.. double lol!!

i finished my sessions with him (there were only 4). he said he needs to have another meeting now with my drs and they'll let me know. so it's been almost 2 weeks since i saw him and they still haven't called me yet... mmmm... loooong story, ha?

anyway, i live in israel and the laxative i use is from a health shop and it's called "yobsolax". it comes in drops. the average normal dose is about 20 drops, i take 150 now and still going up. it's the only thing that seems to still help me, anything else, even if i take the whole pack, it's like i didn't take anything.

i so understand you tracy, and know how you feel. i also don't feel like doing anything or going anywhere, i cant go on a vacation cause i dont know if i'll be able to do my morning profect there and i'm just becoming more and more of a loner and it's sad. i'm not in deep depression, but i might be if my prob isn't taken care of soon.

i truly hope you can find relief too, this is no way to live.
Posted 6/11/2009 11:43 PM (GMT 0)

Hodaya,

I guess my reply to Judy was sort of confusing.  I was answering her post about having an urinary tract infection, which I think I do.  I had noticible blood in my urine on Monday, then it stopped.  My doctor ordered a urine test which today still showed trace blood, so I'm starting on bactrim for 5 days.  Then I'll do another urine test, and if it's clear, that's great.  If not, I have to go see an urologist.  They are assuming it's a urinary tract infection, but I keep getting them, and I had cystocele surgery last October, so I don't think I should be getting them so often any more!

Tomorrow I go to the vascular surgeon to find out what if anything they want to do about the blood clot.  Neither my surgeon or my internist think it's anything too serious, but they want me to see the specialist to make sure.  The thing they could do would be to put me on a blood thinner for a few months, but they couldn't decide if it was necessary or not.  Hopefully the specialist will be able to make a decision since it is his specialty!

When the Dr. office called me today and said if there is still blood in my urine after taking the antibiotics for 5 days I would need to see a specialist, I just laughed.  She asked what was so funny and I told her about the surgery, the blood clot, the vascular surgeon and now this.  All you can do is laugh, I guess.  The thing is I feel pretty good!

I hope to go back to work on Monday, if I can get someone to give me a slip to get back to work!!  I've been out 3 months and as much as I love being home, I am ready to get back.  I only work part time, so it won't be too bad.

For the most part I'm doing great with the pooping, etc.  It's just when I eat things I shouldn't (cake, candy) that I have  trouble going, which is wierd because I've heard chocolate makes you go, but not me.  I would say I probably have 5 good days a week, one ok day and maybe one not so good day....but it has progressively gotten better over the past few weeks, so I'm hopeful it will continue to get better.  Tonight we went to dinner and I had fish, baked potato and broccoli....I was brave and tried broccoli for the first time.  It's really the only green vegetable I like, so I'd love to be able to eat it with no problem.  So far, I haven't gone to the bathroom since dinner, so I'm not sure how it will be!

Until about 3 or 4 weeks ago, I would go several times after each meal.  Now I go anywhere from 4-10 times a day, depending on how much I eat and what I eat.  Most of the time I feel empty but sometimes I still feel like not everything is out.  I get "butt burn" less frequently, but still carry my wipes and cream everywhere.

I really hope you're able to have the surgery soon.  I don't regret it for a minute.  Things aren't perfect, but like my internist said yesterday, it hasn't even been 3 months yet.  My husband thinks I'm doing great; he expected it to take a year before we'd be able to go out and eat, etc.  Actually until about 3 or 4 weeks ago, I wouldn't, but now it's no big deal.  It's nice to be able to get out and about whenever I want!  I totally feel better than I did before surgery.

Lizzie,
I think about you often and pray you'll be able to have another surgery and not have the bag.  If not, I hope and pray you'll be able to come to terms with it.  You've been through so much already, but hopefully you'll find peace soon and will be able to get on with your life.

Tracy,

I think everyone here feels your pain!  I felt like I was alone too, until I found this board a couple year ago.  It took a long time and alot of testing to have surgery, but I wish I'd done it years ago.  To not have that full and bloated feeling all the time is wonderful.  I still can't believe I can poop!!

Hugs,

Janie

Posted 6/12/2009 1:53 AM (GMT 0)
HeyInquiz-That is very interesting that you also had a hysterectomy. I never heard that this issue is common of women who have had hysterectomies. I feel like I have no inards left anymore. No women parts, no colon, no appendix, whats next? I had to laugh at the hospital when they asked me if I was an organ donor. Sure, take whats left in there!! Why not!! Any way, I had total open colectomy. Which means the whole entire colon was removed through a insicion down the middle of the abdomen. about 10 inches long. I have heard of them doing this surgery laproscopicly, but they usually end up doing it open because its easier for the surgeon. My small intestine was then reconnected to the rectum. The surgery was a great success. I already feel so much better than I did preop. Just healing from the incision. I had a bm about once every three weeks. Untill I started using laxatives every weekend after I became terribly impacted. Now I go about five times a day. And it is great. No more bloating or pain.

TDR- You have to find a doc that will listen to you. Because there are treatments out there that do help. You can be normal. I also had all 24 markers present in my sitz marker. They were scattered throughout the colon but never got past the decending colon. When I had my surgery the doc said my colon has been pretty much non functional for six years. It was in terrible shape. I wish you luck in getting treatment.

Lizzie- great to hear from you. Are you back to work. I am getting anxious to go back and its only been two weeks. Its hard for me to sit around and rest but I know I have to. You are a nurse, is that right? A LPN or a RN? Well I hope work has been good for you. How have you been feeling?

Have a great day tomorrow everyone!!
Marisa
Posted 6/12/2009 8:48 AM (GMT 0)
Janie, i hope the infection goes away soon and the blood clot is taken care of. sounds like you're in good hands. keep us posted on that.
i'm so tired of seeing drs too, and doing tests etc. i hate it. oh i hope we can all be drsfree soon, at least most of the time.

i'm so glad you're doing good, getting back to your usual lifestyle and getting back to work... YAY! i'm so happy for you. love you lots!!
Posted 6/12/2009 4:41 PM (GMT 0)
Does anyone hurt more after they have a BM? If I don't have a BM I usually feel nausea and bloated and then when I do have a BM I have sharp pains and cramping. What's the deal?
Posted 6/13/2009 7:29 PM (GMT 0)
you mean sharp pains in the rectum after a bm?
after you had a bm, how long does the pain last?
it could be you have a fissure, which mean like a cut or a scratch in the rectum. this can cause a very sharp pain in the rectum after a bm. go to a colorectal surgeon, don't let it go on w/o a treatment. the sooner you take care of it the quicker it can heal. good luck!
Posted 6/14/2009 12:05 AM (GMT 0)
Ok, I am scared. I'm having another surgery but I i don't when. I've had since two since I got here, Doctor said unusual case. Ugh!!! I cant type on this compiyer,! more later
Posted 6/14/2009 12:20 AM (GMT 0)
Amanda,
I'm so sorry honey. Just try to hang in there. We'll all be praying for you!
Janie
Posted 6/14/2009 3:59 AM (GMT 0)
hang in there Amanda, we're all thiking of you and praying for you (((hugs)))
Posted 6/14/2009 4:11 PM (GMT 0)
Hello Everyone

I have not posted on here in a while but i have been reading up on all of you. I have just been so scared listening to all of the stories that i did not want to change my mind about having the surgery. I am going in tomorrow moringat 730am to have my total colectomy. I am having a laproscopic surgery which I am very greatful for, my Dr. was the first Dr to do this back in 1993 so he has many years of doing this that i feel totally comfortable with him. He will make 4 small incisions to unattached the colon and then then will make a 2 inch incision to pull the colon out and then will attach the small intestine to the rectum. The recovery is 3-5 days in the hospital then 2-4 weeks after i get home. which sounds crazy to me after having this done so we will see. I am young and otherwise pretty healty so hopfully i will start to live a normal life and will not have to have any more surgeries. I have two small children that i need to be healthy for!

Well If anyone has some information they want to share about things i should do or not do please fell free to help. I am a strong person and beleive i will be just fine.

I hope all of you are well or on there way to being well!!
Take Care

Kristin
Posted 6/14/2009 9:42 PM (GMT 0)
Hi all.....just checking in....

I have had a "ok" weekend. My sister graduated from nursing school so we celebrated, but I have been depressed the rest of the weekend. I made an appointment with a psychologist. My psychologist at work that we send patients too referred me to one he highly recommends that works with pts that are experiencing symptoms from medical situations. I go July 1st. I have not heard from my insurance company to see if I can go back to Cleveland. I am so tired of waiting....I just do not know what to do. I feel like I am just exisiting in life and walking through the motions. My weight is stable at 102....so thats good. I had sugar free/fat free ice cream today and I had just changes all my appliances. I have emptied my bag 10 times in the last two hours and it has totally leaked through my new wafer so I have to change everything when I get home. Its so frustrating and reason 135 I do not know if I can live with this bag forever.

Kristin- I wish you the best of luck tomorrow....I hope that everything goes well without complications. You will feel so good after your recovered. Everything will be fine.....some of us, including myself have had complications, but all in all this surgery is successful for CI. Prayers coming your way.

How is everyone else doing...miss you all.

Lizzie

Posted 6/15/2009 2:05 PM (GMT 0)
Hodaya-my sharp pains are in my abdomen - occassionally in the rectum. I have trouble with hemorrhoids. I go back to my colorectal surgeon on July 10th. Can't wait. Thank you for the imformation. I will write down fissures in my journal. I have been keeping a record of all the questions I need to ask my Doc. Any more suggestions?

Amanda-I will be praying for you.

Kristin-I hope surgery is your answer. Please post your thoughts. I am hoping my Doc will schedule mine when I go back to him. Your in my prayers today.

Lizzie-I hate that you have to wait to see your Dr. Bless your heart. I will praying for you.
Posted 6/15/2009 10:14 PM (GMT 0)

Just need to vent.....

I found out this afternoon that I have only been approved to see the doctors again at Cleveland clinic and for NO TESTING!!!!!! I understand I can and have had all of these tests done here where I live and my surgeon would order them again, but I am so frustrated with bad news after bad news after bad news. Nothing has been easy and I am on the edge of losing my mind. I just took 1 mg xanax and phenergan to calm my nerves and stomach. I feel like I could puke, but know I have to eat. They said I need to have the testing here in Michigan and then be consulted in Cleveland. I knew this was what they were going to say, I just wanted something to be easy for once. I am not sure if you read my NEED ADVICE post, but yesterday was one of the worst days by far with my bag and I cannot go through it again and agin for the rest of my life. I did not want to live like this.....so depressed. Anyways....

Needed to vent.

Lizzie

Posted 6/16/2009 12:22 AM (GMT 0)

Lizzie,

You don't need any more trying situations, you've been given sooooo much already.  Would it be possible for the drs at the Cleveland Clinic to write an appeal to your insurance company stating that they need to perform the tests.  It might be worth the try to ask; you might also want to get a lawyer or someone in legislation to plea your case.  I had a student who has a shunt and had 25 surgeries by the time he came to me in 1st grade, his parents had an HMO an they kept getting denied for services.  This boy needed drs out of our area so they finally involved the press and get on the front page then all kinds of higher up people offered to help them and they were able to go out of the area and even got help when their insurance exceeded 1,000,000.

So there are other possibilities; I know you are tried of the bull and depressed but you can't give up this is your body and you have to keep fighting if you want to get better. THERE IS ALWAYS HOPE!

Hugs and prayers,

Judy

Posted 6/16/2009 12:44 AM (GMT 0)
Hi Girls,

Just wanted to say that I'm having kidney surgery tomorrow.  They are hopefully finally taking out my nephroscopy tube (tube from kidney that's been in for over 5 weeks), taking out a stone in my ureter and finding a blockage in my kidney and putting a stent in.  They also have to put me back on antibiotics but this dr is very good at working with my GI dr and the c diff so I'm not too worried about that although my dear husband is a wreck; he's been through so much with me, sometimes I think we forget when we are going through things just what it does to our family members.  They have to stay so strong for us.

Please say a prayer, my surgery is at 12:20.  You guys are the best and I appreciate all the support I get from you, you've become like family to me.  Thank you!

Hugs,

Judy

 

Posted 6/16/2009 1:31 AM (GMT 0)
Judy,

Good luck. I'll be thinking of you tomorrow and saying a prayer that all will go well. I'm sure you'll be fine, but you're right; our families are affected by all of our problems too!

On another note, I'm taking bactrim for a UTI and I am so constipated....I only have to take one more pill tomorrow, so after that I should be able to tell if the constipation is from the pills or not. I hope and pray its just from the meds....this constipation is my worse nightmare.

Sleep tight Judy, and write us when you can!

Hugs, Janie
Posted 6/16/2009 2:12 AM (GMT 0)
Hi everyone, Well its been two weeks since my surgery. I am feeling pretty well other than a sore bottom and getting tired very easily. I went to the mall today with my daughter and only had to hustle to the bathroom one time. Geez, thats a little embarassing. Much more noise and smell than I like to make in a public bathroom. But what do ya do. Any suggestions on the sore butt. Im sure its just from going so much. I am going about six to ten times a day. But am definetly grateful for that. When before I only went once a month without laxatives. I am so glad I am past that.
Kristen-I hope everything went well with your surgery. I had the exact same surgery, except mine was open.
Judy-also wish you success with your surgery. Hope you can stay out of the hospital after this one.
Lizzie-I dont even know what to say to you. I feel so bad you are having such a bad time. Insurance is so frustrating. Do you already have an appt in Cleveland?
Hodaya-how are you? Any new news with your docs.

Thinking of all of you!!\
marisa
✚ New Topic locked
12345678910111213