TOTAL COLECTOMY PART 27

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tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/22/2009 12:25 PM (GMT -7)   
my goodness.. part 27 already!

Jen – Best wishes at your pre-op today! I know the day is getting so close.. and it’s weird to think I was suppose to have surgery yesterday! Instead – I got the barium enema!

Marisa – ((HUGS)) you really have so much going on in your life, and I’m sending prayers to you and your family. We always plan how life should be, but it doesn’t always work out the way we plan and thin it should. I can only imagine what it must be like watching this situation with your parents. Stay strong.

Schmuel – I really thought we would hear from you by now.. hope everything is going well and your just too tired to log on and update us. Please let us know how everything is ASAP.. we miss you.

Christy - Gosh, I just hate it when I post a whole bunch and lose it! Glad you came back and posted again, it’s great to hear from you. My surgery was suppose to be yesterday, but the surgeon became uncomfortable with reviewing the reports and wanted me to have this barium enema first. Now I have to wait and see where it goes from this point. I hate the waiting – I was so ready!

F1ghter – It sounds like you have had your share of doctors that don’t know what to do! It’s so frustrating, and makes you not know what to do! You know, I DO absolutely relate to the diarrhea being harder to get out – which makes me nervous! I have not been diagnosed with Anismus (how do they determine this?) but I do know I struggly and strain much more with very soft stools!

Judy – like Lizzie said, you are our glue here! I really try and focus on your success, and your positive vibes. We all need that so much!

Janie – Today is your defecogram – isn’t it? Gosh.. I hate that test, but hope they are able to see if what’s going on, and if it is a rectocele – at least that can be fixed! I do have to admit – these rectal issues do scare me, as I know I am going into surgery with pelvic issues…

Tracy – Tracy, thanks for the links – I’m heading to check them out. When is your next Dr. appointment – December? Will this be another new doctor? I DO think that the mesh could be an issue.. but this test didn’t see the mesh, or at least they didn’t comment about it. There is no doubt that things are worse now then before the mesh.

Hodaya, how is work going for you? How is your pooing going? Are you still just going little bits? You mentioned your doctor dismissed you, so does he ever need to see you again, or it is just over with him unless you need him? We spend so long working through our issues… have surgery, and then the doctors leave us!

Conmarjo – it’s good to hear from you. I hope your test tomorrow gives you the desired results and you can get on with life again. Sounds like you too have been through so much!

Lizzie – don’t apologize for being blue, you can’t help it. You really have been through a lot these past few months, and now having surgery and getting off your med’s… it just normal for many to have the blues! I do no ever suffer from depression, but I did get the blues after my last surgery! I just couldn’t stop crying, and I really didn’t know why I was crying and so down. It did pass, and yours will too. ((HUGS))

Rosemary – try not to focus on any adhesions, don’t let worry rob you of joy! I know the thought can be scary, but it’s out of your hands. I wonder why some get adhesions more then others… I don’t think I have them badly, yet I have had 4 major abdominal surgeries.

I’m heading out now to pick up the report from the barium enema.. very curious as to what it will say! I’ve mailed out the disk to both of my doctors and they should have been faxed the reports.. so it’s a wait and see from here on out
~Jenise~


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/22/2009 2:32 PM (GMT -7)   
I'm home with the reports, which I have already forwarded to my doctors. The Radiologist said more to me then in the report, but I guess the doctors will have the images to view as well. They were unable to view my ascending colon at all, due to the extremely redundant sigmoid and transverse colon. They saw no obstructions, strictures or masses (thank goodness) and he could not see a sigmoidcle, but noted visualization was limited due to the redundancy. He also noted a couple of small, uncomplicated diverticula, and noted the rectocele as well as a rectal prolapse. So, now I wait - and I have to tell you - I'm ready just to move forward and get better! My stomach is still bloated from the barium test, but the cramps are gone. I used a fleet this AM because of rectal pressure - and YUCK (TMI) I pooed a little and it was all white! It was very gross and weird.
~Jenise~

Post Edited (tinkerbell2) : 10/31/2009 12:44:11 PM (GMT-6)


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 10/22/2009 5:02 PM (GMT -7)   
Hi everyone I survived pre-op! It took 4 1/2 hours. Exhausting! I was able to ask the doctor all my questions and he was very nice and spent time with me and explained everything. He told me the surgery would last around 3 hours and they would try lap. May have to switch to open because my ascending colon has fallen into my pelvis behind the rectum. Could be an issue. He said I would be in the hospital for 5-7 days.

The hospital I am having the surgery is great. Everyone who has had surgery there says it is like staying in a 5 star hotel. You have your own personal nurse and they wait on you hand and foot. We will see.

One big problem that I have discovered is my kids cannot visit me while in the hospital. Noone under 18. My kids are 8 and 11 and are going to FREAK! They are very attached to me. My husband is not going to tell them until after I have my surgery because they will just dwell on it all weekend and make things hard for me. Plus my son has autism and talk about obsessing about things.....whew don't even want to go there.

My daughter is sick. She threw up in the car on the way to school this morning. Complaining about a sore throat and ran a fever all afternoon. I am freaking out scared I am going to get sick. I have some anitbiotics here, I wonder if I should start taking them.

Well I will check in later. I have so much to do.

I know all you guys are going through so much. Just try to keep your head up.

Jen

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 10/22/2009 6:48 PM (GMT -7)   
Hi Everyone,
 
I just tried to read very QUICKLY to catch up because I have a ton of work to still do and it's 9:30.  Thank you for all the kind words; you all mean more than words can ever express!  Things are not going well at all at school and I'm loooking into getting a lawyer which is very sad because I absolutely LOVE my job and spend so much time there.  I usually arrive by 6:45 and never leave before 5:00 unless I have an appt.  I also tutor during the summer and buy clothing for students as well as have taken foster care classes so that I could take a student home with me for visits.  I even cut one of my student's hair because his mom died and his dad can't afford to take him for a haircut, so, yes, I'm very dedicated to my job in many ways other than just teaching.  But for some people that doesn't matter. 
 
Anyway, PLEASE, know that you are all in my prayers and that I am ALWAYS thinking of ALL of you.  And YES my surgery is still a HUGE SUCCESS and that it was and still is the BEST thing I have EVER done.  Please don't give up and know that there IS someone out there that CAN and WILL help YOU.  Life for you CAN be better; continue to fight the fight and NEVER, NEVER give up!!!!!!
 
Love you; will talk more soon,
Judy
 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 10/23/2009 3:58 AM (GMT -7)   
I am telling you am so scared I am going to get sick and not be able to have surgery Monday. My daughter is sick. 101 fever, sore throat, headache...Yikes. I wash my hands constantly, Lysol everything but still scared. Any ideas on interventions, anything I should take. I do have some antibiotics here. I just cannot get sick. I will be devastated if I can't go ahead with the surgery.

Jen

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/23/2009 4:22 AM (GMT -7)   
Oh my gosh Jen, I totally understand how scared you are!! The same thing happened to me, but I never did get sick. First, if you are going to get this illness, it is NOT something you want during recovery! As hard as it would to be rescheduled (I know - I'm here waiting for a new date), it would be better then getting sick! That said... kids are always getting sick, and I'm sure you have had the kids sick and you and hubby never get it.. because you already have built up antibodies.. hope this is the case.

What is everything they did at your pre-op? Did you talk to the anesthesiologist about getting sick?

Judy, I know you're dedicated with your job, I could tell that before school even started!! Are they making drastic cutbacks that it's in jeopardy? I hope not, I know the kids there need you as much as you need them. Having a great teacher makes or breaks the child's thoughts, feelings and performance!

Re: my barium Enema.. again, I'm curious to know what your reports indicated. I know many of you have had this test. Last night I got to thinking about all the recent tests - and the results are all (mostly) different! How are we to really know what the heck is going on?
~Jenise~


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/23/2009 4:28 AM (GMT -7)   
Marisa, you started a 2nd thread, but I wanted to post it here:

evans18 said...
Wow, is it just me or are you going through these quick!! My mom was placed on life support last night. I left today at work so I could go and be with her. All I could do is stand there and hold her hand and cry. Gosh, this is so hard. I am taking tomorrow off work so I can be there for her and hopefully be able to talk to a doctor. I am not ready to let my mom go. We had such a terrible relationship when I lived at home. Ever since I have been married we have grown so close. I am losing my faith and that scares me. I know there is a God and I truly love him its just that my family has been through so much. I havent been to church in a year because I really do not know what church to go to. I am a baptized mormon but have struggled with the religon for years. I need church in my life but do not know where I belong. Any suggestions anybody? (Sorry to get religious but I am desperate)

Christy it was great to hear from you again. Its been awhile.

Thank you for all your love and support and prayers. I am so emotionally spent I am so tired!!

Will try to keep you all updated, Love everyone

Marisa


I'm soooo sorry about your mom! I know it is hard to let any of our love loves go, but I think it is harder when the go too soon. My thoughts and prayers are with you. Don't lose faith, there are reasons we can't know why God calls us home unexpected. ((HUGS))
~Jenise~


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 10/23/2009 4:56 AM (GMT -7)   
Jenise,

I spoke with a nurse anethesist. So she just asked the basic questions about health. I told them about my daughter. They said if I am running a fever of 100.3 or higher I have to call the surgeon which basically means the surgery will be cancelled. I am doing everything I can not to get sick. I have never had the flu or strep so I am hoping I will be ok. I am exposed to untold germs in my job as a child care inspector. I basically touch everything in a facility so I have built a pretty good immunity. However I do get colds, and colds for me lead to pleurisy. Though I already had that about a month and a half ago and I only get that once a year.

Basically in the pre-op they did a physical. Then asked a million questions. Then I asked a million questions. Then I went to the hospital where the process was basically repeated with the exception of blood work. They took 5 viles of blood and then did a blood clotting test. They also asked me a million questions. All told 4.5 hours.

They put a bracelet on me and told me that if I take it off the process would have to be done all over plus it would cost 700.00 to get a new one. OMG! I won't be losing the bracelet.

Talk later...I have work to do.

Marisa I am so sorry about your mom. My thoughts and prayes are with you and your family. You have to let your Faith in God get you through this. I know it is difficult.

Jen

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/23/2009 11:23 AM (GMT -7)   
Jen-
 
I think your doing all you can....universal precautions: handwshing, avoid sipping off her cups, do not let her brethe right on you, was evrything, etc. m so sick right now....i have 100 fever, aches, cough, and slept for 10 hrs straight. I feel like I can barely move. I had my labs drawn yesterday and will see if my electrolytes are better. Its my lasy day of pain meds and emotionally I am feeling a bit better. I am worried becuase without the MOM I feel I would not go, but i do with it and do not have to take much. I dont know....I am not eating much or drinking much at all with this flu and my hematoma is like an alien and i hope the fever from the flu does not mask something going on with my hematoma. I just am so prone to infection. I was supposed to get out tonight for my MIL suprise retirement party and now I do not even know if I can go and I do not want to expose a room of people. I live in a condo building and my neighbor did not even want to get in the same elevator with me...she said i looked and sounded awful.....
 
I wish you the best Monday, I know how hard it is to have it cancelled and I do not want that to happen to you....and I dont think it will  if you keep up the good work of cleaning yourself, her, and everything else.
 
Marisa- My heart breaks for you.....I do not have any words. I oray God can guide you through this terrible time. Do not focus on the past relationship with you mom, but the recent, loving closeness you have. You have to. Know you mom loves you and she has fought a good fight. Let God take control from here and all you can do is tell her how you feel, hold her hand, and be there with her. She may me unresponsive, but she knows. I am praying for your peace of mind and strength....you do not have to go to church to have God in your heart....he loves you from a far and from the church. Worry about you right now and staying as string as you can.
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus, Dehydration-Ongoing, but resolving 10-15
 
"The Greatest Healing Therapy is Friendship and Love"


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 10/23/2009 12:27 PM (GMT -7)   
to answer somebody's question from the old thread:

No, my stomach specifically did not /does not swell from the gastroparesis. It is basically slow emptying which causes abdominal fullness (severe!), early satiety, a feeling as if there was a rock in your stomach, nausea etc. If it is bad it can also cause a pressure pain but it is rarer especially since colectomy with ileostomy.

Gastroparesis (if it is diagnosed with the gastric emptying scan) mostly does not disappear after colectomy for slow transit constipation. Most people with CI do not have gastroparesis although they might suffer from stomach disturbances due to the backing up of the colon/intestines. But these disturbances are just symptomatic which means that they cannot be measured with a gastric emptying scan.
However, most people with gastroparesis experience a deterioration of their gp symptoms when they are constipated. So severe constipation can definitely make your gp symptoms worse due to the backing up of the intestines; the stomach which release food too slowly anyway cannot empty in a clear small bowel but it is also full subsequently to the full colon. So the emptying is additionally impaired.

That's why my gp symptoms have improved after colectomy/ileostomy. Prior to this surgery I was unable to eat anything except for one toast and a little bit of rice milk a day. I barely eat 400calories each day in the end.
I had horrible nausea. The nausea has decreased most but I still suffer from fullness, early satiety and moderate nausea.

I did swell when I had a subileus/when my intestines got severly backed up but this was rather in the mid abdomen.
Furthermore I suffered from extreme bloating/distension due to the severe constipation (I also had chronic pancreatitis) and the inability of my colon/rectum to propel/release even gas. If I were lucky I could get rid off a gas bubble in the evening after suffering the whole day and standing at least 7-8 hours in front of the heater in the bathroom while I also used a heating pad on my belly. And I could only get rid off it ina special moment when I caught the cramping and supported the rectum manually and with special body positions. And I had to do this every day!!! only to have one "poop" of gas. You can't imagine the procedure for real (so-called) "pooping".

conmarjo
Regular Member


Date Joined Apr 2009
Total Posts : 36
   Posted 10/23/2009 12:34 PM (GMT -7)   
OMG, I am so exicted.  My TEE was normal, no blood clot and I can go off coumadin.  No blood clot and I had a normal poop this week, life is good.

abd. hyst prolapsed uterus age 29
gallbladder removed
ovary removed, adhesions
twisted ovary removed ahesions
pelvic mass
Sjogrens's syndrome
Chronic constipation
colonic anertia
total colectomy,blood infection, clot in heart, pelvic abcess, esphogitis 5/09
feels fantastic,  I hope forever!
 


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 10/23/2009 12:57 PM (GMT -7)   
oh I forgot to mention that I always had to assist my manual manipulation with a tube that was about 20cm long and which I inserted in the rectum...just the fingers were not enough to open the rectum/spincter. sorry for being so graphic.
The rectal tube is normally used for the application of little enemas or for helping to release gas. But it never did this by its own cause the rectum would hold the gas inside due to my spasms. so I had to open the rectum (not just the anal spincters) with the fingers and the rectal tube. It was a disgusting very painful and time consuming procedure!
Sometimes the tube got stuck due to my horrible rectal spasms. I could pull and pull but I could not get it out unless the spasm resolved.
Then it hurt so badly that I screamed. The rectal spasms were so strong that they had made a loop/snarl in the tube that looked like handmade.

I wonder if a rectal/sphincter tube could help you with empyting your rectum while suffering from outlet problems that are caused by the pelvic floor and not by a rectum dysmotility by itself which ist much rarer.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/23/2009 4:03 PM (GMT -7)   
Lizzy -

I am approaching 3 weeks and 3 days post reversal and still feeling weak. It took every ounce of energy for me to walk 3 miles this morning. I still have NO appitite. I forced myself to drink one Boost w/ High Protein today and to eat a 1/2 protein bar. I drink about 1/2 cup prune juice to help me go and I will go about 15 times in the day (probably 12 times at night). I think you are doing great. Just considering going to your MIL party was a huge accomplishment. During week 2 post surgery, I wasn't still having problems just homeschooling my kids. I was in so much pain I could not concentrate. Even now I have to take about 3-5 baths a day just for my sore bum and my incision area/hole in stomach from the where the bag was hurt/burn constantly - especially when I wear pants. I mainly spend most of my day in panties and long shirts and I live with gobs of butt cream. My dr told me not to go back to work for another 6 weeks from now and I am grateful. There is no way I have the strength or the energy to consider going back to work.

Keep resting and recovering. Honestly, I think you are very strong and your doing great for being 2 weeks out.

Keep me posted. I think of you often.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 10/23/2009 8:00 PM (GMT -7)   
Marisa-I'm so sorry to hear about your Mom.  Please know that we are all praying for you and your family.  Faith is a hard concept for all of us at times especially when we are struggling with so much pain and turmoil in our lives; but it is at these times when we need to rely on our faith the most.  I always have had the strongest faith with all of my medical issues and have always prayed about them and knew that God would lead me to the right drs to help me and He has; but when our oldest daughter started seeing someone that was totally out of her character and was staying out most of the night, I was devestated and was so upset.  Finally my husband told me that I need to put my trust in God just as I have with my medical issues and since then  things have changed.  She has stopped seeing the guy and started coming home earlier or not going out at all.  We also started going to church (I always went growing up and before we married but after we married we didn't go). Then when I was so sick in May my husband wanted to start going and he has changed completely and has made his faith a priority now.  We have found a church that we like and we are very content with our life.
 
Marisa, try to hold onto your faith; you don't have to go to church right now but please keep God close. Church will come when you are ready.  Your Mom knows you are there. My Dad and I were extremely close; he died suddenly 4 days after his 58th birthday, I had a very strained relationship with my Mom all of these years (9) and she has tried to figure out what was wrong but now I'm finally able to just tolerate things with her and not let her bother me.  So savor these moments and don't feel any guilt for the past, you are the person you are today because of what you have experienced.  Your Mom loves you and knows that you have ALWAYS loved her. Hugs and love to  you.
 
Jen-Praying that your daughter feels better soon and that you do not get sick.  I know you are so set on having surgery but please DON'T have it if you even have a sniffle.  This is major surgery and it takes your body a long time to recover so you need to be in good health going into it.  I once had to cancel knee surgery due to strep so then my dr scheduled it Christmas Eve just for me & then I got pancreatitis so it's better to be healthy and have a good chance for an optimal recovery.  Sending hugs and love your way.
 
Lizzie-Hoping and praying you are feeling better. You are only 2 wks out so it will take time for your body to heal. Love you.
 
Jenise-I've had sooooo many tests that I really can't remember them all so I don't even remember how many times I've had the barium and what I did to get rid of it, sorry.  They aren't having cuts at my school, it's just that my superintentdent wants me to pay back the money for the time I missed in May and June.  I was approved by the Sick Bank Committee for the days but she said I've used too many.  I have used 210 days since 2002 which is A LOT but I've had MAJOR surgeries and illnesses.  I  have drs  that have written letters but it doesn't matter she just says I've used too many days.  So she wants me to pay back 30 days worth of pay.  Right now it's a contract issue thank goodness.
 
My stent is giving me a lot of dicomfort; my dr & I talk weekly, he changes my spasm meds & dose but so far it hasn't worked.  I'm probably going to have it changed early and with a new stent (tail stent) to see if that will help. Other than that things are good, bowels are doing very well; I am now only having one large bm a day so must be my diet is okay this week:)
 
Hi Hodaya- Love you and miss you:)
 
Janie, Tracey, Christy,  and all of the newbies: hope you are feeling well and hugs
 
Peace and prayers, 
Judy
 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/23/2009 9:01 PM (GMT -7)   
Hi everyone,

Marisa, I am so sorry to hear about your mom. I'm sure she knows you're there now, and that's the most important thing. The past is just that, and you're with her and loving her when she needs you the most. I have struggled with faith myself the past several years. I've lost my 3 best friends, all way too early. My last friend to pass away lost her 35 year old daughter to ovarian cancer and then she died of breast cancer 3 weeks later. Both my friend and her daughter had more faith than anyone I've known in my life, but still a family was torn apart. Three little children lost their mother and a grandmother in less than a month. It was the closest family I've ever known and now they have completely unraveled. My friend's husband just doesn't want to live...it's been over 2 years and he's only gotten worse. The daughter's husband is getting remarried and won't let his children see their grandfather; they were all in business together, the business has failed and the family is completely torn apart. I think of my friend and remember how important her family was to her and then I look at what's happened and just ask why. I know there is a reason out there somewhere, but for now it's hard to imagine. I think we all struggle at one time or another with faith, so don't be too hard on yourself.

Judy,
I'm sorry to hear about your issues at work. I hope everything works out for you. It's such a shame that you have to go through this; it wasn't like you were out on vacations all those days. Good luck! Glad your pooping is good though!

Amey,

I so can sympathize with you and your sore butt. I was just saying that I can't believe how sore my butt has been for 7 months! I have days here and there where it's not an issue, but many days I take 4 or more hot baths just to relax my muscles, and to ease the pain. I truly hope it won't last so long for you. When do you drink your prune juice and how long does it take to get things started? After all these months I'm still trying to figure out when the best time to drink it is; it usually makes me go within an hour or so, but like you, I go about 15 times for the next 4 hours.

Peltzier,

You have been through so much. Whenever I start feeling sorry for myself and my issues, I think of you. I can't imagine going through so much to have a bm. I was diagnosed with GP a few years ago; I took the test with the radioactive egg. Nothing moved through well until they gave me erythemicin (sp). I've really never addressed it since I was diagnosed because with the CI, that seemed to be the biggest issue. I had alot of acid reflux and I'm not sure what contributed most to that, but since my colectomy, the acid seems to be better.

Jen,

Good luck! I hope you're able to get through the next few days without getting sick. I know before my surgery I started getting a little sore throat and I was so scared. Luckily I didn't get sick, but I was really worried. Hopefully those germs will stay away!

Jenise,

Was the barium test you had a small bowel follow-through? I had one before my surgery and it just showed a slight delay, but nothing serious. It was the worst test I had, I think. I didn't drink barium because of how constipated it made me, but instead drank this horrible tasting stuff, like old mouthwash. I had to drink 2 large glasses and I threw it up after the test. That rocking and rolling for the test didn't help; it was just horrible.

Hodaya,

Haven't heard from you, hope you're doing well!

Lizzie,

Hang in there sweetie. I hope you get rid of that lousy flu soon and start feeling better!

I know I've left so many out, but I'm thinking of you all and hoping you're doing well.

I had my defogram this week and it wasn't bad at all. I think it was different from the first one I had; this time I drank the barium, had the paste in my vagina and my rectum, and then just sat on the pot and the technician stood beside me and told me first to squeeze as if I was trying to hold it in, and then to try to expel it. I had one minute to try to get it out, and I got about 1/2 out. She was so sweet and it wasn't as embarrassing as the first one was. Maybe I've just gotten used to people looking at, prodding and talking about my butt and pooping, I don't know. Anyway, I was looking at the screen and I can see that I have a rectocele, but it wasn't that large, I can't believe that's the reason I can't get the poop out. She said it's definitely there, but she's seen so much larger. I see my surgeon on Thursday to get the results of this test, as well as the sitz marker test I had 2 weeks ago. I'm anxious to see what the tests show, but worried that if the rectocele isn't the reason I can't seem to empty there may not be much else to try other than an ileostomy. I'd have to think really hard about that one.

I have been drinking my prune juice nightly and that definitely helps, but keeps me tied to the bathroom all evening. Tonight I tried something different. We went to dinner with friends and then wanted to stay out for awhile longer, so i took a lomotil to slow things down. I know that sounds crazy, but that 3 week period when I was doing so well, I was taking a lomotil in the afternoon and metamucil at night and in the morning I'd have a great bm...and during the day I'd go a little and I felt great. Then it just stopped. Well tonight I took the lomotil with dinner and so far, nothing has happened, but I don't have that horrible pressure I get when the food moves to my rectum after eating. I really don't care about how often I go, I just don't want that pressure. I'm still thinking and trying to figure out what to do, my doctor sure wasn't much help last time I saw him so I'm trying to figure it out for myself. I drank some metamucil a little while ago, so hopefully in the morning I'll be able to go. If not, I'll drink my prune juice.

Hope everyone has a great weekend!

Hugs,

Janie

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 10/23/2009 10:26 PM (GMT -7)   
Hi gals....
 
Do not know hat to do or think. I did get out tonight thanks to my vicodin breaking my fever and aches and was able to celebrate wiith my MIL and her work friends. My biggest fear is I took MOM today and only went once.....usually its 6-12 times at least with each dose. I feel yucky and not sure if its the flu or my hematoma. I emailed my surgein and he has not gotten back to me.....for the last five days my BM output has decreased abrubtly. I am so scared....more scred than i can even imagine. I wish i had butt burn and i amhardly eating anything anf off my pai meds as of this am. Sooooooooooo.....guess its just waut and wonder, i  hate this. I fell like hell.
 
Love u all.
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus, Dehydration-Ongoing, but resolving 10-15
 
"The Greatest Healing Therapy is Friendship and Love"


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 10/24/2009 5:15 AM (GMT -7)   
Lizzie,

Try drinking prune juice. I drink 5.5 ounces (small can) and it works pretty well. Also, my doctor kept telling me that if I didn't eat, I wouldn't poop. I know when you aren't going it's hard to eat more, but maybe you're not eating enough to go much. Also having the flu is probably making you feel worse. Let us know how you're doing.

I didn't drink prune juice last night and took metamucil instead, which used to work pretty well. It's the only time I've ever had really formed stools. Well, so far this morning I've only gone a little bit, I'm eating cereal to see if things get moving. If not, it will be the trust prune juice this morning for me.

Who would have ever thought it could be so difficult to poop?

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/24/2009 7:33 AM (GMT -7)   
Janie, It will be interesting to see what your doctor says. I didn't have the small bowel barium test (where you drink it) but rather the large bowel - where they give you an enema, and a rubber balloon is inserted into your rectum to help you hold the barium in. All my test done seem to have discrepancies in the reports... I hope that the doctors will be able to figure it out and do something! I am ready just to move forward with things now, tired of all the tests. I realize that I may never be perfect, but I hope I can at least be improved.
~Jenise~


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/24/2009 8:24 AM (GMT -7)   
Jenise, wow. All of your test reports are all different. How weird and SCARY! How are you to make an informed decision if the tests aren't all consistent? When do you see your surgeon again? I am anxious to see what he has to say about this? I wonder if they will remove the redunant part of your colon and if this would make you a better pooper? I can't wait to see what he has to say.

Lizzie, I know even if you don't eat you still should have to poop...maybe not as much, but even a liquid diet will produce poop. I know you are very scared....I am scared for you. But maybe it is just a slow day???? Try miralax if the MOM doesn't help or the prune juice. Also, can you use suppositories? This may help. I am so tired of worrying about pooping!!! And I bet you REALLY are! Do you feel like you have to go but can't? I hope you get it sorted out and soon.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/24/2009 8:36 AM (GMT -7)   
Pelztier, I also have issues with getting rid of gas and also any consistency of poop. I disimpact everytime and it is awful. I never used a tube before and enemas don't help me at all. I can't always poop the water out. I think something blocks the anal opening, but no doctor has told me what it is. I will probably have an ilesotomy...not sure there is any real help with this outlet problem. I can't have a colostomy because my colon has colonic inertia. Are you much better now? You have an ileosotmy?

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/24/2009 8:44 AM (GMT -7)   
Judy, can't you use 60 days a school year if you have to? I am eligible to get in the sick bank this year and they said you can use 60 days? I was unsure if that was a one time deal or not? What are you going to do about paying back the 30 days? That would surely not be fair if you were approved and paid for those days???? I am sorry about your kidney stent causing spasms. I have spasms when I have a UTI and it is almost unbearable...you are one strong woman to still be able to work and function with spasms like that. I also know that spasm type pain is very hard to control. When I had rectal spasms, no pain pill would touch it. I cried for hours when I had those spasms. YUCK

I hope your doctor can go in fix this problem and very soon.

As far as pooping once a day, that must be wonderful...

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/24/2009 9:26 AM (GMT -7)   
Hi everyone,

ALL I can say is that my heart goes out to everyone!

Jenise- I sooooooo wish I had found this site prior to having my 2006 "disaster surgery". I would have had my defecogram repeated at different places and interpreted by different radiologists. I would have done the transit test, the anorectal manometry, all tests I did not know existed at the time and my 3 colorectal consults did not tell me of. This site would have educated me. I would have found out ahead of time that I did not even have the sigmoidocele which was incorrectly identified by the resident reading the defecogram. But seeing as I can't go back, I just want to wish you all the best in whatever you decide to do. I know your docs are going to interpret your tests for you, and it sounds like your docs have your best interest at heart. They are right in re-doing all these tests; that is a sign they're being cautious. That is a good thing for you (though I'm sure test re-does are taxing on you.) but I am truly amazed how each one of your tests seems to come back with different results like Tracy said. When they say that medicine isn't an exact science, I guess we need to take that seriously. One would think there would be some truths, though. Good luck.

Marisa, I feel so bad about your Mom. Take care. Am sending you prayers.

Jen, Good luck not catching that flu; but if you do, you will reschedule and things will go on. As tough as a reschedule is to do, you do what you have to do. Just the emotional build-up to a surgery is a lot to go through, I know. Best wishes.

Lizzie, I am praying for you. Maybe with having the flu and not eating much you are just experiencing a temporary set back; I hope that is all. Only time will tell. Am praying for you.

Sincerely, Rosemary

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/24/2009 9:52 AM (GMT -7)   
Judy, your work issues... this all seems so unfair - it's not like you were out taking a vacation or having fun! I hope it all works out for you, and fairly. Sorry you have to face more things with your kidneys - and I understand why it's so important to wait till summer.

Tracy, I have issues getting gas out too. In my x-ray exams.. it shows gas trapped in the sigmoid. Are you or have you had the barium enema test? I do think they will still go forward with the plan on resection my sigmoid, but now I wonder if they will also resect the transverse colon - since it is redundant and prolpased into my pelvis...?? I know both the radiologist and tech made it sound as that the only treatment is surgery, and wished me luck. I have to think if they get rid of all the kinks, things will flow out better. Again, I will go in prepared that I suffer from pelvic floor descent (no surgical correction available) and I will not be looking to poo like my hubby, but I sure do hope I can go without excessive straining, laxatives and my fleet glycerin! I also hope it will get rid of the excessive bloating and cramps I suffer everyday.. tired of it - as I know all of you are too!

Rosemary, I know you have been through so much.. and I guess they are right that medicine is not an exact science. I have had 3 defograms, at 2 locations, and read my 3 radiologist PLUS 3 doctors (colon, GI and uro-gyn) They all show a rectocele, one shows a sigmoidcele and internal rectal prolapse (I think this test was more revealing - showed my sigmoid, other 2 did not) I've had the sitz marker, shows CI, most markers remained, and 13 trapped in sigmoid... I have had 2 pelvic MRI's - but don't have the reports on those, this last test also showed a rectocele, internal rectal prolapse and said "no sigmoidcele, but visualization is limited due to extreme redundancy", also - from my research, a sigmodcele can only be seen on a defecogram - while straining! I just have to trust this team of doctors who are looking at it all, and hope they can determine the best plan of treatment. I know I need the rectal prolapse fixed, I do not want that coming out of my body! I do think 2 of the doctors are very conservative, and not jumping into surgery without looking at everything - so for that I'm grateful! They hope to make this my last surgery, and so do I!

Jen, how you doing today? Staying healthy I hope!
~Jenise~


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 10/24/2009 10:29 AM (GMT -7)   
Hi Jenise,

Thanks for the summary of your tests. Out of interest, I have to ask you about something you said to Tracy, if you don't mind. "Again, I will go in prepared that I suffer from pelvic floor descent (no surgical correction available).......just curious, where did you hear that there was no surgery to correct pelvic floor descent?

Sincerely, Rosemary

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 10/24/2009 11:30 AM (GMT -7)   
Rosemary, I think I am using the wrong wording... when I went to my last appointment and questioned the "pelvic floor descent", they (uro-gyn & colon surgeon) said that they can fix pelvic organ prolapse, such as what I had with the sacral colpopexy, but that there was no actual surgery to "fix" perineal descent . I too thought that was strange, because I had the pelvic floor surgery, but after researching, I think they mean the muscle damage done can't be repaired... upon straining, my pelvic floor clearly descends.. not as much but still does, even though I had the sacral colpopexy and my vagina, bladder is now fine!
~Jenise~

Post Edited (tinkerbell2) : 10/24/2009 1:07:49 PM (GMT-6)

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