HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 19

Support Forums
>
Ostomies
✚ New Topic locked
12 3 4 5 6 7 8 9 10 11 12 13
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/19/2008 3:30 PM (GMT 0)
Locked out of 18, so here we go!

I had to cancel my defecocography at Stanford on 4/29 because my hernia surgery was scheduled on the same day. Plus I figured that I should probably get the hernia fixed first.

On another note, our son with the Crohn's has now been diagnosed with ankylosing spondylitis. Poor guy can't even get out of bed - making me have flashbacks to when my husband was going through the fusing.

He has an appointment on 4/29 (another 29th appt) with a rheumatologist and she's thinking about either Humira, Remicade, or possibly Enbrel. This is a wonderful doctor that only takes certain patients at this point. She reviews the records and then makes her decision whether to see the patient or not. I'm so happy that she has decided to see our son.

Posted 4/20/2008 1:15 AM (GMT 0)
I just got a copy of all of my records to take to another Dr. for a second opinon. What exactly is pelvic floor dysfunction and has anyone else had this? Will this make a difference in how I might respond to a colectomy? Is this why my doctor is recommending biofeedback before surgery? Geez, I thought I asked him enough questions, but since I see the report in writing myself, I have so many more. I'm sure someone here knows, though!

Thanks,
Janie
Posted 4/20/2008 4:57 AM (GMT 0)
Janiepain

Pelvic floor dysfunction is when the external anal sphincter and/or puborectalis muscles do not relax when you're trying to go. The biofeedback is to train you how to coordinate the use of the abdominal muscles with the pelvic floor muscles. I also have pelvic floor dysfunction, but unfortunatly we didn't know this until after I had my surgery, so I'm still in the same boat I was in before the surgery. In my case, I also have denervation (nerves were cut/damaged during another surgery) so biofeedback won't do any good in my case.

Posted 4/20/2008 1:24 PM (GMT 0)
Wow--that's a shame you went through surgery and it still isn't working....are you any better at all?  I see you had a sub-total; would a total have helped do you think?

After an episode of the laxatives not working well this week, I am so ready to do this, but my surgeon not only wants me to have the biofeedback for 4-6 weeks, but then to also have a large rectocele repaired first. I hope to have the rectocele repaired sometime this summer, but I probably won't have colon surgery until the end of the year because of some plans we've made. 

What are you going to do about your situation?  Did you have all tests before your surgery and they missed it, or maybe you didn't have them?  I hated going through all the tests, but I do feel like they have a pretty good idea of how many problems I have...which turns out are quite a few!

Thanks so much for responding!

Janie

(P.S.) Part of our history looks the same; I also had double mastectomy..in 1999.  Other than that, I've never had surgery before.

Posted 4/20/2008 2:45 PM (GMT 0)

Janie

The only test that was done before the surgery was a Sitz marker test. As far as being better than I was before the surgery, I'd have to say yes only because some things that wouldn't work before will work now, i.e., Lactulose. I have to take more than normal, but at least it gives me a little relief. It's does't work all the time, but will work at least 80% of the time which is better than before.

Yes, having a total probably would have helped me since it usually give you runny stools. That's the only way I can go. During the manometry testing, I couldn't expell the balloon until it had only 5 cc of water in it. I was originally supposed to have a total, but what the surgeon left behind "looked okay" so he left it behind. This is the same surgeon that did my resection for diverticulitis with fissues to the bladder and probably caused the denervation since I could go normally before that surgery.

I have a suspicion that I'm going to end up having to have the rest removed. I was supposed to go for defecography testing on the 29th, but I'm having surgery for a hernia (number three) on that day, so I'll have to reschedule after I'm healed from that.

Surgeries - I've had a lot - over thirty. I call myself the freak of the family. LOL

Posted 4/21/2008 8:49 PM (GMT 0)

Hey guys...hope you all are well.

I just wondered if any of you have had problems with headaches or dizziness. I just left work becuase I could no longer be standing without feeling like I am going to fall over. My fellow nurses said I would turn really white and look peakid. I took my vitals and all were normal. Also, I have been having headaches, which I never had before, about 3-4 days a week. I called my PCP and he siad if I am not feeling better to come in for labs tomorrow?

Just wondered if any of you have had these symptoms since surgery.

Lizzie

Posted 4/22/2008 12:39 AM (GMT 0)
Lizzie,

I had my colon removed Oct 07'. I was doing well and recovering good. Was even able to get back to working out doing a little jogging on the treadmill along with a little strength training. Had my last post op appt w/ my surgeon in January. Then in February I started becoming out of breathe while working out.

I didn't want to go to the doctor during the height of flu season so I put it off. But by the end of February I was getting dizzy and at one point I had gotten up to go to the bathroom during the night and fainted.

The primary care doctor did blood tests and discovered I was severely anemic. My blood count was around 6 and 20 respectively when the normal is around 15 and 40. (The organs can start shutting down around 5 and 18) I was put in the hospital and given 3 units of blood.

Now I'm back seeing my GI doctor who is doing tests to try and discover if I'm bleeding somewhere in my GI tract.

The doctors all tell me that having my colon taken out would not make me anemic. So maybe it was just coincidence in the timing. I've never been anemic before.

I just wanted to share my experience w/ you in case it might help. Good luck and I hope you start feeling better and there's nothing wrong.

((HUGS))
Kim
Posted 4/22/2008 1:06 AM (GMT 0)
Lizzie, I had a total colectomy in August and still have dizziness and nauseousness. I was anemic at first, and now I have low blood sugar levels if I don't eat all of my 6 small meals each day. At first I thought that maybe I was gettin dehydrated, but I just needed to eat more. I'm learning to eat foods that provide me the best nutrients. I'm not sure how you're eating, but I've had to eat alot smaller portions since having my surgery. I guess that my stomach is just alot more sensitive now than before.. I hope that you get feeling better, and maybe this helped some..

butterfly
Posted 4/22/2008 5:29 PM (GMT 0)
Lizzie...I am getting headaches too!!!!  Without looking at a calendar, I am pretty sure I am 5/6 weeks postop.  I started getting headaches about a week ago.  I was soooo tired this weekend and did have some dizzy episodes.  I was anemic in the hospital, but before I left (the second time) my levels were pretty good.  I saw my surgeon yesterday, but dumb me, forgot to mention it.  I think I might just call my PCP to see if he will run a test.  I still haven't gotten my period yet.  Do you think if I took an iron supplement that it might get better?  I never took iron before, even when I was prego, b/c it was so constipating.
Posted 4/23/2008 2:22 AM (GMT 0)
If you want a good iron supplement you might want to check out hematinic.

http://www.hematinic.com/
Posted 4/23/2008 1:28 PM (GMT 0)
Lizzie/mom I hope u 2 start 2 feel better! Never thought about anemia, but in my 1st child birth I did become amemic. Hopefully it doesn't affect me like this, it was 11 years ago and haven't had it since. I do now at times feel dizzie for know reason. Never passed out but wondered why I was feeling like this. Lizzie my app was monday and it was terrible. Every1 knows how it feel 2 be waiting and it seem to me like 2 weeks was taking 4ever to get my test results. Over 2hours in the clinic waiting 2 see my doctor, he seen me in the lobby while he was talkin to a patient that was very rude. Finally I get called in the back, a doctor I had never seen before came in. So he goes through my file and I'm like explaining to him my situation. He goes and ask my doctor what's up. Comes back ask me if I had my manametry test results. Noooo! That's why I'm here, they didn't have them and they couldn't get them, it had got late and the lab was closing. I asked where my doc was and they told me he (left). What! I asked what he say? He said (if) test was good he would do my surgery, and schd. Me for an sub......Omg....I'm like goin off now, I got so many question rolling out, and know answers. His daugther was supposed to be getting an award and it was an emergency! I was told to come back in 2 weeks. I asked him what does he do and would he take my case, but he said he don't like these surgeries. He told me that its so many problems during the procedures doctors don't like to take cases like this. I told him that I didn't have a problem finding another doc if this 1 didn't know what he was doin. But he wouldn't say if this was a good doctor or not so I took my hint. Man ole man I left and went straight to my primary doctor, its like 420 now, so I'm crying and explaining what happened to my doc. So I told him to refer me to someone else cause i didnt want this dude to do my surgery. My pcp has givin me someone who only deals wit colon and rectal surgery my app. Is on tuesday and I can't wait.. Lol...I've calmed down since but I realized this guy wasn't qualified enough to take on my surgery. This surgery scares him and I think he didn't want to tell me. ....Wow... I had almost losted my mind.. But I'm back now. Has this happened to anyone? And how did you know if you had the (right) doctor. Sorry so long ... I hope everyone is well!
Posted 4/23/2008 1:31 PM (GMT 0)
Hi resa, I am hoping that all is well and that it is not serious with the pain. Yesterday I was in bad pain all day and was scared and called the surgeon. They told me to keep walking even though it hurts and to continue with the aleve. It was bad all day and night. I woke up this morning and had no pain at all and was so grateful. You are going for a hernia surgery? I had one two weeks ago and ended up having 3 hernias. I think I told you my whole story. How long ago was your surgery? I know we know the difference of gas pain and pain at the incision site or whatever. Let me know how you are doing. I will be on and off of the computer all day since I don't have the patience right now to watch tv. I'll keep in touch. Take care, enpointe

Posted 4/23/2008 1:44 PM (GMT 0)
Resa,  I think I saw someone else who is having the hernia surgery, sorry. enpointe
Posted 4/23/2008 2:03 PM (GMT 0)

Sourbutsweet~

Sorry you had such a frustrating appointment. It is better to have a colorectal surgeon do your surgery becuase that is all they deal with. My surgeon had done many many total colectomy's, but he had only done it four times for the reason of colonic inertia or slow transit and I was his second youngest patient at 27. The GI I originally saw and who ran my tests was referred to me by one of my docs I work with (his wife works in the facility) and then my GI referred my surgeon. I asked the doc at work and he said he heard he was good so I trusted he was and......he was phenomenal. I hope Tuesday goes better for you. Keep us posted.

Mom- It took me almost three months to get my period. I just got it a couple weeks ago. My biggest issue in the hospital was my potassium and I am supposed to take it every day, but I have not been. But low potassium does not usually cause dizziness.....more cardiac arrythmias. I think it must have been my blood sugar. I came home and drank some OJ and had some complex carbs and felt better. I went back to work yesterday and felt ok....just exhausted. I slept 12 hours last night. I got home from work at 7:45 and was asleep by 8:30!!!! My shifts just take everything out of me.

Resa- I hope they figure out what is going on with you....sorry you have to travel so far. Keep us posted.

Hope everyone else is well.

Posted 4/23/2008 4:49 PM (GMT 0)
I as some of you may remember posted few times before few times post surgery. I had a TC on Feb 20th. I have had to have alot of unit of blood. For somereason my liver was cut during surgery, and then I had very bad bleeding internal hemroids. I also have heavy periods, so all that together.I have had about 7 units since leaving the hospital.



I notice on here a lot of people seem to know certain individuals stories better so they tend to listen to them more. Which I guess is normal.


But I have been readmitted to the hospital 3 times and 2 er visits since my release at the first of March. They said a HUGE reason you feel bad after this surgery is dehydration as stupid as it sounds. It will cause you total pain in your abdomen, make you weak, faint sweat, rapid heart rate. Not go to the bathroom. Also the pain meds they put you on when your in pain is a double edge sword, pain meds make you constipated then the constipation makes you hurt worse. My doctore as well as several er doctors and nurses say with this surgery 9 times outta ten when we come in they give you Iv fluids a shot of morphine maybe something for nausea and you begin to feel much better. Then you get the bill for 5 grand cause they run ct scans and blood tests.


They said if you are not drinking ATLEAST a gallon of fluid a day you will have problems both with gas, pain, bloating, constipation and not feeling well. So if in doubt go sit infront of the tv with a gallon of water or crystal light or something and drink away. Even stuff containing electrolytes help alot they can prescribe you them too.


But dont drink caffeine cause will make you pee even if you dont have to and if your dehydrated anyway then your in more trouble. I have found that I just carry around a huge jug of water sometimes flavored and drink all day every day. My heart rate has gone from 128 WHICH IS INSANE that is why they kept sticking me back in and now its 109 not great but not ready to die. I go to the bathroom anywhere from 3-8 times a day. I had stopped like many of you had. We dont have instestines to absorb fluid the way we used to so we aint camels we need constant rehydration.


Also has anyoneheard of CHOLESTYRAMINE? My doctor is in london and for some reason called it in? The pharmasist said its for cholestrol and liver and many digestive uses he doesnt know specifically why shed want it for me I dont have a cholestrol issue. Just curious.

But when indoubt before you freak out and rack up thousands in medical bills DRINK DRINK DRINK gallon of water. Believe me it helps my stools arent bloody anymore im not straining, I dont get as many cramps. I sometimes get this annoying one on my left side below rib, and sometimes right behind belly button, but I am dont like a twisted wreck. KNOCK ON WOOD>

Thanks Guys
Angie
Posted 4/23/2008 4:55 PM (GMT 0)
oh sorry forgot to mention yes my iron is always low. for some unknown reason they blame it on me being vegan and scandinavian and a redhead, guess we dont abord it okay? they put me on iron and mine is still a 9 hc which is low.

i was told by a nutritionist to take twinlabs capsuled vitamins not the hard centrium type, cause our bodies dont absorb the hard kind we end up peeing out most of it or getting a stomach ache. I swtch to the capsuled vitamins and get an iv of iron once a month and am feeling alot better returned to work yesterday. still very limited lifting, but I walk everyday. did you know walking helps bowels move, so if you cant go try drinking a bunch of water and strolling around the block. i dont want to fall into same pattern of taking laxatives foreverything, then not going naturally.

If you recall I was lucky with miralax fiber (the fiber i still take) and 11 meds I went a cat sized hard stool maybe every other month. I literally couldnt go. Try the hydration the fiber excersize before you jump back to the RX in my opinion.
Posted 4/23/2008 8:14 PM (GMT 0)
hi everyone. Alot is going on today. Resa, be careful and I also tolerate alot of pain which has caused me problems and er visits. I am glad you are feeling better right now. For me, I have been having dizziness everyday and not drinking near as much as all of you are. My blood sugars have been low and  I get freezing cold. I will start drinking more and appreciate the feedback. enpointe
Posted 4/28/2008 1:06 PM (GMT 0)

NEITZSCHE6/ANGIE - Thank you so much for updating us on your post-op, along with the information you provided - GREAT INFORMATION!!!! So sorry to hear about your liver being cut during surgery - OMG, that must have been frightening!!!

I've ALWAYS been a big water drinker (pre and post-op) and can agree it's one of the best things we can do for our body, this  in my opinion anyway.  I drink about a gallon of water everyday - NO PROBLEM!!  It really does the body good!!!

You mentioned that the pharmasist said the CHOLESTYRAMINE is prescribed for liver and other issues - maybe cutting your liver during surgery has something to do with it.  Do you find the iron constipating?  I've always had low iron and could NEVER take any supplement for it.  The MiraLAX pre-op, along with many other meds, didn't work for me.  I've had to start taking the MiraLAX daily and now it works wonders.  MiraLAX really isn't a fiber though, it's known as an osmotic-type laxative.   It works by holding water in the stool to soften the stool which increases the number of bowel movements.

I hope things continue to go and remain well for you!!  It's so nice to hear how others are doing after surgery, the good and bad, as it shows that the human body adjusts.  Please keep posting!!

RESA - How are you doing?  Is the pain completely gone now?  Well wishes to you!!

ENPOINTE - How are you feeling?  I'm like you and Resa and can tolerate a lot of pain.  I take a lot of medications for manic depression/anxiety/OCD and my surgeon told me when I was having unbearable pain it was due to my liver having to process so much medication that I required a stronger/higher does of pain medication.

I'm a year and a half post-op and get occasional dizzie spells.  I went to my PC about two weeks ago to get lab work done and will see her in about two weeks to discuss the results.  I have a big feeling that I'm low on iron as I have feel low on energy a lot of the times. 

Post and let us know how you're doing. 

Posted 4/29/2008 1:17 AM (GMT 0)
Hi Stuck42Long, I ended up in the er yesterday with excruciating pain and could hardly walk  and couln't sit on the stretcher. Was given morpine iv and 1000mg vicodin. They did a ct and found out that I had an area around a ruptured ovarian cyst with fluid around it, it burst and went into my abdomen cavity which was causing all the pain because fluid should not be in there. Here I am walking 2 hours to recover daily and now on bedrest and vicodin and need an ultrasound. It is all so insane. I hope you are doing well and thanks for asking about me. enpointe  Denise Oh, I am also on alot of meds for schizoaffective disorder, high blood pressure, anxiety, hypothyroidism, cholesterol depression,fibromyalgia and pain. Cccrazy.

I am diet controlled diabetic though and am glad for that

Posted 4/29/2008 2:49 PM (GMT 0)

Hey guys

Just checking in to say hi. I am still having occasional dizzy episodes, but if I eat more they are better throughout the day. We moved all weekend and I did not eat/drink all day and that caused some issues.

enpointe, sorry for all the struggles. I hope you start feeling better soon. I keep waiting for something to happen to me, but I have had my fair share of complications. I am enjoying this break.

Stuckfor2long- Hope your lab results come back good. Keep us updated on the results. I too have those darn dizy spells. I think mine are my blood sugar.

Hope you are are well.

lizzie

Posted 4/30/2008 1:48 AM (GMT 0)

Just when I think I am getting better and got this whole living with digestive problems under control I get a flare up of pain and I wanna scream.

I went back to work, but I am on light duty so I stand there and pretty much do nothing all day.

My diet I did go back to eater larger portions but I was feeling like I was starving. But I gained like 5 lbs in a week, I thought maybe it was because I wasnt eating for so long that my body just held on to all the calories. But I have been in pain now for two days not my usual pain where it just is cramping and hurts. I am talking I cant stand up straight I had some tramadol left from my surgery I have been taking every few hours but it isnt helping. I even put my waist brace back on because I literally feel like I cant walk. I cant get comfortable no matter what. I have been going to the bathroom a lot more. I take Miralax twice a day as prescribed, and I take fiber as needed, I havent been using as much as I used too, cause isnt fiber making me go to the bathroom more?

I have been drinking tonz of water trying to stay hydrated, that used to be my biggest problem. My total colectomy was feb 20th. I am scheduled for a eeg or a e something g I dont remember it's a scope to check to see whats going on in my upper digestive system. I have already had two nissan wraps so I cant imagine what else they can do to my stomach?

I really feel like I am going to cry or drop dead. I may go to e.r. cause I dont think I can wait til Friday to get over this pain. I swear just when I take a step forward I take a few steps back. Very depressing I am 31 years old and dont remember not having stomach issues. Either I was living with chronic vomiting and heartburn, or constipation to the point that I only went with help every month. Now I get colectomy and still chronic pain? Atleast I go to the bathroom now, but I dont know why I have this stabbing seriously stabbing me in the navel pain. Anyone else ever had it feel like its knotted up and stbbing you in the navel or right above the navel?

 

please email me if you know or have had this problem cause i dont check this as often as i should. [email protected]

 

I really hope the rest of you are doing better. Gosh I hope we all get over this soon.

Angie

Posted 4/30/2008 1:54 AM (GMT 0)
XTREME-

I get dizzy too. I take promethazine for nausea it's one of the side effects it says, do you take anything that it could be the side effect too? Also when I used to get really super dehydrated I was dizzy, and shakey.

I don't know I wish I could help you all more. I can just give advise from my own experiances.

Thanks Everyone for your compassion and making me feel I am not alone in this cause sometimes I do feel like I am the only person that is frustrated.

Angie
Posted 4/30/2008 2:00 AM (GMT 0)
JainePain-

they did two tests because I guess I have a weird relaxed muscle in my anal canal that they wanted to make sure I could completely empty my bowels before they did the colectomy. One was a anal monometry the other I forgot the name but both were humiliating one they fill your anal canal up with this oatmeal type barum stuff and have you sit on a mock toliet and watch on a xray thing you poop it out. Its really embarrasing. The other you lay on your side they insert a small baloon into your rectum and have you squeeze it at various places in your anal area and push and its also terrible. Both I wouldnt recommend having for something to do on a friday night, but both are I guess necissary to avoid a second surgery if your rectum doesnt function okay they need to know.
Hope that in some way helped. I hated the whole thing I am quite modest and it was like 5 people watching me try to poo very tramatic, but better than another whole surgery.

Angie
Posted 4/30/2008 2:09 AM (GMT 0)
resa

I crave green tea too. I wasnt taking anything but fiber but then I started to take miralax only if I didnt go at all the day before. Sounds like you and me are kind of a like.

i was glad to read that you had pain that eventually subsided, not glad you were in pain, glad to hear that I am not alone, and that yours wasnt serious. I hope that made sense.

I cant drink enough green tea and ice tea and water I feel thirsty all day, i guess cause we dont have the large intestines we get dehydrated, tea is good for you as well as a good antioxidant so I am drinking it alot lately.

Okay I will shut up and let the rest of you guys post I am hogging all the part 19 haha Take Care all
Posted 4/30/2008 3:16 PM (GMT 0)
Angie, please go take care of the pain asap. It could be a hernia in your naval area or something. It could be alot of things right there. Please let us know what came of it. Even if it goes away today I would get it checked out quickly . Take care, denise
✚ New Topic locked
12345678910111213