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TOTAL COLECTOMY PART 23

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Posted 7/13/2009 12:34 PM (GMT 0)
Janie, It seems that a lot of us have had prolapses as well as issues with our colons. I just wonder if it goes hand in hand somewhat? I do know all my issues started 20 years ago when I delivered my 9.5 lb baby (a VBAC - my 3rd child, first vaginal delivery). I was rushed to emergency surgery as I almost died bleeding - I was torn on the back of my vaginal canal - 6 inches. No doubt that weaken everything. I will be following what your doctor says on Thursday. How frustrating to have surgery and still feel the same way! On your happier note.. havanese are adorable! It was one breed I considered before I got my puppy 2 months ago! My puppy is a Papillon.. and I just love him to death! He is by far the smartest dog I have ever owned.

Hodaya, how frustrated you must be! Is there a teaching hospital nearby you? If there is, maybe you should seek a doctor there out, as they are usually on the cutting edge of things. My doctor (s) are over an hour away.. I hate to travel, and on my last surgery only DH came to see me.. but I feel it is worth it. I know you have had tests done, but refresh my memory - what were they and what were the results? I feel soooooo fortunate that an "obstruction" actually shows on the report, of course I have another doctor who will be reading the x-rays and 2 others who will read the reports (3 doctors in total). I hope they all agree with the best plan of treatment, because I will hate conflicting views.
Posted 7/13/2009 12:53 PM (GMT 0)
Judy, let us know if your kidney dr. finds the reason for your stones. I have calcium kidney stones and don't know why. Some have passed over the years while others are just there, lurking.
Posted 7/13/2009 1:19 PM (GMT 0)
Hi guys.....

Thanks for all your well wishes. This week is my BIG week!!! I am very nervous and scared. I cannot sleep and I just want some answers...good or bad. I have had a rough weekend again. I keep partially obstructing and this causes such extreme nausea and pain and my stoma tries to work things through. I had two more loose bowel movements out of the rectum this weekend as well.....still holding onto this as hope. Also, my husbands grandma has been diagnosed with lung cancer and I d o not feel she will make it much more than a few weeks or so....we had her admitted to the hospital last night, so this is hard as well, but otherwise my depression has been better...much better. I think the meds are working:)

Hodaya....I hope you find out something today??? Please let us know as soon as you know. I am praying for you and love you so much.

Jusy- I hope they can figure out your stones. Thanks for praying for me, it means more than you will ever know. I feel like I complain a lot on here, but my medical uncertainty is just wrenching. I just thought I would feel great with this stoma and I dont...its a bog pain in the a**!!

Janie- I wish you the best this Thursday....we will see our dr's on the same day:) I will defiately be thinking about you :) I hope they can give you some feedback on what is going on!!!!

Love you all....

My surgeon- wednesday for 3 mo check up

Thursday- Cleveland Clinic

Lizzie

 

Posted 7/13/2009 7:48 PM (GMT 0)

Judy, hmmm... i don't why your computer is filtering my posts, but maybe i'll just email you every time i post something. let me know if you got this one, k?

about facebook, it's no problem, you can sign up from any computer and log in from any computer too. you just enter you personal details and like you sign on here from where ever you want, same thing on FB. i'd LOVE to see ya there :-) ! have a great week too!

tinkerbell, we don't have such a thing as teaching school in israel, i'll just have to hope i get the help i need soon.

well, as to your question, i had a gastroscopy - fine, colonoscopy - fine, abd u.s - fine, manomentry (twice, before and after the STARR) - fine, defecography before STARR - major rectal prolapse and a 2.5 cm rectocele, zits marker test - markers throughout the colon after 5 days. then i had the STARR, it didn't help, started doing more tests, sigmoidoscopy - fine, preanal u.s - still a 0.5 cm rectocele and still a bit of  a prolapse, mamometry - fine, barium enema - very long and loopy colon, defecography - a slight level of anismus, but the defecation was very good, i managed to defecate completely, but that was over a yr and a half ago, and since then it has changed big time! i feel my anismus now is much worse, zits marker test again - markers thoughout the colon after 5 days. on last Jan i had a repeated preanal u.s that showed my anismus has gotten worse and another zits marker test in which the markers where in the transeverse colon on day 5. then throughout the left colon on day 7, same place on day 9 and still not reaching the sigmoid colon, then on day 11 there were 4 left, cause i had a bm on day 10, actually it was 1 bm devided to 4 times, very littlse each time.

oops... sorry for the legth of this.... but you asked.

you know, israel is such a small country, so everything is so close by, i have to travel only 20 minutes to get to the hosp.

i hope this team of drs of yours figure out how to help you the best way.

Lizzie, so sorry about your husband granma sad is she very old?

i was hoping that at least with the bag you'd feel better, but seems like you can't get relief in no way, i'm so frustrated for you! anyway i'm glad the depression is better tho.

and anyway, what's with you guys, are you like Judy can't see my posts either?? well, if you can see them, you can read my update just a few posts back, on page nine of this thread.. mmmm.. not a good one tho.

♥ you all lots!

Posted 7/13/2009 9:31 PM (GMT 0)
Janie, I have 4 kids all weighing. 9lbs. 2oz., 8lbs. 12 oz., 10lbs. 13 oz., and 9lbs. 8oz...That is definately what tore up my pelvic floor. I have had 2 surgeries to correct the dropped pelvic floor. But, the surgeries made the bowel movements nearly impossible to get out. It was 2005 when I had a hysterectomy, a bladder sling, and a pelvic floor lift....after this surgery I did not have a bm until 2 weeks later and this was with mega doses of laxatives...well, this is when I noticed I could no longer push the bm out. My push muscle did not work and has not worked since. I can pull up to hold poop and gas in, but not push down. If I pass gas, I have to push really hard and will sometimes pee on myself. Passing gas is not a regular part of my day...I can't hardly ever fart. But, this is not so bad when I take miralax and force myself to have a bm, even if it is a small one, it keeps the gas build up down. I have the hardest time when I work though because I can't take mega doses of miralax and by Wednesday, my stomach will swell to be very big and hard. it feels like I am expecting a baby...My husband joked when I had my ct scan that they were going to tell me I was hiding a baby in there. LOL

I know my new doctor said that a total colectomy should not be performed if your rectum does not work. He said I would be even more miserable because the bm's with no colon are supposedely more liquid and would not make for a fun day trying to get them out by disimpacting myself.

Your surgery was 4 months ago? That is really not a long time. It took me 12 months to fully heal from my sacralcolopopexy, and 6 more months for all the pain to go away. I wonder if you still have some swelling of the intestines. I know that my anal spincter always rebels if I have any surgery near it and it is a pain that no pain pill can touch. That is what had me at my doctors office in his face because I could not push down to poop and the suppository or my finger caused such horrific rectal pain that I thought I would die. This went on for several months too. But finally the pain got better and better and now, I am pain free. Don't give up hope! Maybe you can get a botox injection like I am. I am praying that this works. I think pelvic floor dysfunction can be alot of different things. But, I think anismus is considered a pelvic floor dysfunction..Just be real honest with your doctor...maybe you need a new defecogram???

Hodaya, wow! I can't believe what a run around these docs are giving you. I know you don't live here, in the USA, but can you go to different doctors like we can? Because I have probably 10 hospitals within a 50 mile radius of my house with different doctors at each one. But, there are only 3 different practices of colorectal doctors though. I am just not sure how the process works around you...do you have medical insurance like we do?

Lizzie, I hate that you are still having issues. I thought an illestomy would be your "cure"! But someone told me that if you can poop through your rectum, that you must have a "loop illestomy"? Is this true? And your rectum is kind-of working now...I am keeping my fingers crossed that this is a good thing and there may be hope for all of us with anismus. :)

Sorry I rambled on for so long, it is just so many things that have happened, that all my thoughts swirl around in my head. And it is so nice to talk to "professionals" about all of these bowel problems. LOL

Oh yeah, my mother tried it again...said she heard a doctor talking about colon health and said I need to be eating more vegetables. UGH I said, mom, my colon is paralyzed and my rectal muscle is damaged. I can drink a whole bottle of miralax and give myself water diarrhea and still be unable to get it out. She just said, oh. But she really has no idea.
Posted 7/13/2009 9:51 PM (GMT 0)
gosh Tracy, you poor thing, your pelvic floor does sound like a mess. i feel so bad for you and i pray the botox helps you - you must have faith!

i can go to lots of other drs, we have a pretty good medical care here. i don't have private insurance, but the medical care we have has lots of posibilities to offer really.

and yes, anismus is considered as pelvic floor dysfunction, cause that's exactly what anismus is all about - a functional problem.

i forgot to mention that i got myself an appt to that gastro specialist the psych wanted me to see and i'm seeing him on this coming sunday. i'll let you all know how it went.

and please Tracy, ramble on, this is the place to do it, we can all share our thoughts and learn from each other's ideas. isn't this just about the BEST forum ever?
Posted 7/13/2009 9:53 PM (GMT 0)
Oh yeah Tinkerbell, I have only seen 2 colorectal doctors and 2 gastro doctors and none of them agree on a plan of action. The 1st colorectal doctor said I need a total colectomy and I will be fixed...I couldn't pin him down on an answer about why I can't push the bm out though. One gastro doctor wanted me to try fiber and more water. The other gastro doc said my ct scan and colonoscopy were normal and that I had nerve damage to the rectum and that I would just have to live this way for the rest of my life because there is no cure for nreve damage.

This new colrectal doctor has atleast offered me 2 different conservative measures that MAY help me. Botox and biofeedback. I want to try everything else 1st, then will consider a temporary illestomy. I really hope for you that your doctors agree on what will help you. This will really help you make a decision if they all agree.

Hope everyone is doing well.
Posted 7/13/2009 9:59 PM (GMT 0)
Well Hodaya, go see this new gastro doc, but if you continue to get the run around, then I would go see someone else. Is there another colorectal doctor that you can see? Because there isn't many colorectal doctors in the state where I live...but I could always go to another state. One of the world renowned doctors for constipation, Dr. Christopher Lahr, is several hours away from me and I may get a 3rd opinion from him. I have a hard time trusting doctors. But, I have my hopes on the botox and biofeedback....I am going to claim that and hope the LORD gives me a break. LOL
Posted 7/13/2009 11:32 PM (GMT 0)
Linda and Judy,

I'm so glad to see more posts about what to eat. I had my single incision, lapro, total colectomy with ileorectal anastomosis 2 months ago. The surgery went so well! I was up and moving the next morning, and was released from the hospital in 72 hours. The surgeons were amazed at my physical progress! I've lost 20 lbs. and have been taken off 2 of my blood pressure meds and 1 of my diabetes meds. I'm down to about 125, but eating has been SSSOOOOO difficult.

I had followed a high fiber, low fat vegan diet for 2 1/2 years, which allowed me to get my diabetes under control and work my way off insulin. Following surgery, my surgeons told me to try whatever foods I felt up to, that my system would let me know immediately if I could tolerate it or not. Boy, were they right! I've spent the last 2 months working with them, my GI doc and now a dietician to figure out what to eat. I can't digest alot of animal proteins, and the plant proteins I used to eat (beans, grains, nuts, seeds) cause me intestinal hyperactivity! I was averaging 10 - 12 BMs at 8 weeks out from surgery. The GI doc has upped my daily dose of Immodium. The dietician has told me to do low residue for the next several months, and stop worrying about adding in all those delicious fruits and veggies I used to eat. She has told me to concentrate on keeping my carbs within limits, keeping fat intake very low, and try to get 50 - 60 g. protein each day. She's prescribed a protein supplement and that seems to have helped. I have found that I can easily tolerate: potatoes, white rice, oat bread, white bread, applesauce, plain or vanilla yogurt, low fat cottage cheese, goat cheese, canned carrots, plain pasta, apple butter, banana, oatmeal, peeled grapes (sometimes), soy milk, and most anything with no nutritional value at all (like cake, pretzels, french bread cheese pizza, etc.)! I haven't tried peanut or other nut butters... the fat content kept me away from those in the past.

By far, the food and controlling the BMs has been the hardest part of this for me. I had no symptoms prior to surgery... as a result of anemia, I was sent for a colonoscopy which revealed dozens of polyps throughout the colon... which later were found to be just this side of cancer. So going from feeling normal intestinal-ly to having multiple loose BMs with lots of pressure each day was very difficult. At one point over the last couple of months, I stopped counting the BMs at 25 one day! My hope is that the upped Immodium, the low residue diet, and working on getting my protein grams will help me regain my strength.

I am so thankful for this generous group of folks whose advice and experience has helped me so much!
All the best,
Donna Rae
Posted 7/14/2009 2:17 AM (GMT 0)
Hi Donna Rae,

So glad that your surgery went so well and that you are able to stop taking some of your meds for other medical issues. Mine was a "text-book" case also.  It was open but I was only in the hospital for 5 days and never had any complications.  I too started out with 20+ bms a day but couldn't use any amount of imodium because even a half of a pill caused me to have constipation again.  By the time I hit the 6 week mark I was going 8-10 xs a day and went back to work full-time; yes I was exhausted but I did handled it.

It will be a year FRIDAY smilewinkgrin ; my GI has me follow the low residue diet and I probably always will; that's one of the reasons why I see a nutritionist.  I kind of forgot about all of the protein due to all of the medical things that have been going on since May but she has had me eating a lot of protein too.  I used to eat a yogurt called Chobani, it has anywhere from 14-18g of protein per serving.  It comes in a variety of flavors but it's really thick like sour cream and I don't like chunks in anything so I would only eat plain or vanilla so I would mix applesauce with it; it's a great source of protein.  It might be hard to find, all I know is that it is a Greek yogurt.  She also had me eating almond butter with hazlenut rice crackers as a snack, lots of protein also.  I got these items in the Health Food section at Wegman's or you can get them at a Health Food Store.  I also drank a container of coconut water diluted with water each day, it's the best source of natural electrolytes and a lot better for you than drinking gatorade, again either Wegman's or Health Food Store.

Try to remember that you are only a couple of months out; it took 9 mos for my body to regulate to 2-3 bms a day and for me to finally start to feel like I was ready to work out again, even though I went back to work after the 6 weeks, the healing process can take up to a year. 

Don't get discouraged and try to stick to the same foods everyday for awhile even if it is boring; it will help your body adjust in the long run.  Just before I got sick in May I was putting hot sauce on everything again without having any problems and boy did I love it:) 

If I can help you with anything else just let me know; I wish you the very best, it will slow down I promise :-) ,

Judy

Posted 7/14/2009 2:40 AM (GMT 0)
Judy, it is good for me to hear what you did after your surgery. I was told when I went home to eat a low residue diet. The dietition gave me a pamphlet with foods that contain low fiber. I ate this for about a month, then was told by my dr I wasn't following the low res. diet like he told me to. I looked on the internet and there is so much conflicting information on what is low. residue. Thank you for sending the website your GI told you to use. That is a good idea to eat the same foods for awhile for our bodies to get used to it. I hadn't thought of that. Can you tell me what flat bread chips are? Are they like pita chips? The turkey you eat for lunch, is it from turkey you have cooked or from a deli? I know to stay away from the packaged lunch meats. Thanks for any info!
Posted 7/14/2009 2:57 AM (GMT 0)
Even with me having my colon, I eat about the same foods. The foods that I eat and do okay with are oatmeal, ham or turkey sandwiches on white bread, chips, pasta. eggs, cheese pizza, bread or rolls, potatoes, applesauce, hamburgers, pickles, roast, chicken, cereals, granola bars, oranges, grapes, and corn. I also eat fruit smoothies made with berries and vanilla yogurt. I can't eat too many more foods than these due to getting nauseous and locked up. I can eat ice cream occasionally, but all dairy makes me super super constipated. Do you guys think if I ever had a total colectomy that I would be able to eat the above foods? I am not feeling too good tonight because I ate 1/2 chicken barbecued sandwich, a teaspoon of potatoe salad, and a teaspoon of peach cobbler and I feel STUFFED, like I overate, but didn't. Did you guys feel like this before your colectomy? And do you feel this worse since you have had the colectomy?
Posted 7/14/2009 4:35 AM (GMT 0)

Linda,

I made a mistake, the chips are called Flatearth not Flatbread; they are in a sky blue bag and you can get them at Wegman's ar most grocery store, Wal-Mart & Target might have them also.  As far as the lunch meat, I always get mine from the deli; it's usually roasted or smoked turkey breast.

Tracy -most of the foods you eat now won't be allowed when you first have your colectomy.  If you have to stay on the low residue diet then you won't be eating them again.  If you go back to the post that shows the website I gave to Linda it will give you the list of foods allowed on a low residue diet.  Don't worry about not being able to find things to eat because you will and for some reason your body will crave new things, that's what mine did for quite some time.  I know it sounds disasterous right now because if someone had told me a year ago that I couldn't eat watermelon again - which I just about live on in the summer- I would have told them forget it I'm not having this surgery, but it's been the best thing that has ever happened to my body and is well worth giving up the watermelon.

Take care,

Judy

Posted 7/14/2009 1:04 PM (GMT 0)
Judy, or anyone else-did you feel nausea after eating post surgery for total colectomy? I am almost at 3 mos post op. My portions are smaller now, which is a good plus! I'm thinking I feel this nausea because my system still needs to get used to working without a colon even though all it did was store poop extremely well, too well since it didn't want to give it up!

TDR-I did feel like that before the surgery only because I was so full of poop. As each day went on it got worse and worse since I wasn't able to go to the bathroom. I wouldn't get hungry and have no desires to eat.
Posted 7/14/2009 5:06 PM (GMT 0)
Linda,

I never felt nauseaus, but my surgeon definitely told me it would be a possibility.   I can't poop still very well, but I'm not nauseaus! tongue

Judy,

What does watermelon do to you if you eat it?  I love watermelon, and haven't had any problems with it.  At first, when I was going 15-20X a day I couldn't eat it because it went through me so fast, but now it doesn't do a thing....in fact I've tried eating it to make it go through me.

I think after I see my surgeon on Thursday I really need to find out exactly what I should be eating.  His advice was to eat anything and if I couldn't handle it, I'd know it.  That was true for awhile, but when I stopped going so much it seems everything just fills me up and makes me have so much rectal pain.  In the past he really hasn't been real helpful about problems...

Janie

Posted 7/14/2009 5:32 PM (GMT 0)

Linda,

I was nauseas for a few months following my colectomy so I took zofran which I was already on 3xs a day but then I went off it by about 4 mos out from my surgery.  Then I didn't have any more stomach problems; but I tend to have a really sensitive stomach so any little thing will upset it like this last illness caused me to take the zofran again but I'm wheening off it now.

Janie, the watermelon and any other fresh fruit causes extreme D with me; that's why I stay on the low residue diet.

Judy

Posted 7/14/2009 5:33 PM (GMT 0)
Janie, that's what I've always been told....I'll know it if it doesn't agree with me. But I have been severely constipated my whole life and after surgery I don't want to see if a food will constipate me again! I love watermelon too, but will do what I have to do just so I don't have to feel so sick again.
Posted 7/14/2009 9:13 PM (GMT 0)
Hi girls! I had my first full day of work yesterday. I was so exhaused by the time I got home. I feel crampy in the abdomen and I feel like I just delivered a baby. You know that achy feeling in you butt. I hope I am not over doing it by going back to work for a full day. Do you think I should only be doing half days? My husband and family think so. But I have that weird feeling in me saying whats your problem, its been six weeks you can do it. How long did you all wait untill you went back to work your normal hours? Also how long did you take pain meds for? I only take about four lortab a day. And I do not know why because they really do not work. My diet is going really well and I am pretty much eating the same foods I did pre surgery just about half as much. I am down to 117lbs. and everyone keeps telling how skinny I am. I just hope me going back to work does not hinder my recovery.

Linda, you had your surgery in April? How do you feel overall? Are you back to your regular activities? Do you take anything for pain anymore? I had the exact same surgery for the exact same reason that you did.

Tracy-I am very thankful that I had my surgery. I was very sick for about three days after my surgery. I vomited a lot. And it was very sore. Phenergan really helped me though with that. I know all to well about deimpacting yourself. I did that many of times. Its awful. Now, I go about five times a day. And if I slow down I just drink apple juice to get me going again. I just get paranoid if I do not go about every 3-4 hours. I think I have issues though!!

Good to hear from everyone. Amanda-I hope you are healing well and we all hope to hear from you soon!

Marisa
Posted 7/14/2009 9:53 PM (GMT 0)
Marissa-I think I have those same issues because if I don't go at least 4 times a day I am worried! Overall I think I feel pretty good. I sure wouldn't run though, but I didn't run before surgery either! My days vary though with tiredness. If I am really busy with the kids, or lots of lifting even though it's not heavy I feel sore in my abdomen. Now that I think about it, it's pretty normal for me to feel a sore spot in random places in my abdomen, but it goes away. I don't take anything for pain. Actually, when I left the hospital I wasn't taking anything. But I was in for 17 days because of a complication. I too am so thankful I had the surgery.
Posted 7/15/2009 12:16 AM (GMT 0)
Just wanted to vent a little. I am soooo nauseaus from taking so much miralax. It is sloshing around in my belly and not giving me any relief. I can get a tiny bit of hard stool to come down in the rectum, but that is it. Why is the poo hard? I take miralax, tons of it every week. I should be having water fall diarrhea. UGH

I wanted to be cleaned out so I could hang out with my husband tonight, not be sitting in the bathroom all night long. I have been to the bathroom atleast 15 times today just trying to get it to move. I am so sick of this. I took some zofran and ate some tums because I feel like I have heartburn and nausea. There will be no dinner for me tonight either.

I am praying the botox injection, Friday, helps me out. But, I am thinking that the colonic inertia is getting out of control. I used to be able to take miralax once a day, then 2 doses, then 3 doses. Now, I can take 4 doses in one day. And it will work eventually, but I will have to turn around and take 4 more doses every other day because if I wait until every 3rd day, then I will be extremely constipated with hard poop. Is anyone else like this?

I have read some of you take senna? What is it and does it make you nauseaus? Is it prescription? If not, where do I buy it? Exlax and correctol give me horrific cramps, I believe they are such bad cramps due to the anismus and inability to poop the watery poo out.

I can't even think about taking milk of magnesia because just the smell makes me retch and gag. I used to take it everyday. I just can't take it anymore. It also made me extremely nauseaus, where I could not function. Atleast the miralax doesn't make me want to vomit just from the smell.

Anyway, hope all of you are doing better than me. I am considering drinking some more miralax so I can get to feeling better. I am tired of being obsessed about pooping. I also don't have good energy levels and I think it is because when you take alot of laxatives, that some of your vitamins don't work. Does anyone take vitamins?
Posted 7/15/2009 12:45 AM (GMT 0)
This sounds like my experience with miralax. It worked for awhile, but eventually it just bloated me. Senna is bought over the counter. I believe just pill form. A store like Walgreens or CVS, Snyder's Drug, etc. carries it. I've hear people say it works for them and others they have had to take 30 a day. It never did much for me. Hopefully someone with more experience with it can give you more information. I don't take vitamins but should. I totally believe when you are so full of hard poop that your body cannot get the proper nutrients from your food. I hope you get help on Friday.
Posted 7/15/2009 2:02 AM (GMT 0)

Hello to all I am new to this site.  I started researching sub-total colectomy a few weeks ago after my visit to a colorectal surgeon.  I am 38 years old and have suffered from chronic constipation since November of 2000.  That is when I had my daughter and the problems started.  I have tried every over the counter and prescription med out there.  Some worked short term but all caused major bloating. I am now basically in the routine of taking 15 pericolace once a week to have a bm. (basically plan a bathroom day) I have tried taking a regimen of it but that does not work, I just end up bloated and prolonging the agony.  It is a miserable way to live because I am basically sick 4 to 5 days a week.

Over the past 8 years I have had a colonoscopy twice, two endoscopies, and two sitz marker tests.  I am completing my third sitz marker test this week.  This time taking x-rays three times in 5 days. The surgeon ordered the third sitz test prior to making final decision for surgery.  I basically have colonic inertia as they call it.  I also have gastroparesis which was diagnosed a few years ago after a gastric emptying test.  I get full pretty much after a few bites and it takes forever to digest.  So basically my whole digestive system is out of whack cry  . 

So I am now faced with what looks like my only option which is surgery.  I am scared to death to do this for fear of major complications.  The doctor says I will have to go to the bathroom 3-6 times a day when everything settles down.  This worries me because I am a child care inspector and am in and out of facilities which beckons the worry of where to use the bathroom.  I was wondering if after the surgery when you need to use the bathroom is it like major urgent like I better find a bathroom NOW or is the urge more subtle shocked    The thought of being able to use the bathroom without meds and not feeling bloated all the time is very appealing, but I worry about going to the other extreme. 

I would appreciate any information as I am due to make a decision about surgery very soon. 

Thanks
Jen

Surgeries:  appendix, two c-sections, abdominoplasty with hernia repair, and gallbladder.

Posted 7/15/2009 2:09 AM (GMT 0)
Hi all....

Tomorrow is the start to my two days of doctors. I see my surgeon at 130 and leave right after for the five hour drive to Cleveland. I have my appt in Cleveland at 9 am. Say some prayers....I am sick with nerves.

I am so sorry so many of you are going through so many tough times. I will pray for some peace in those tired bodies.

Tracy and Marisa.....three to four times a day is wonderful. Embrace this and look really at the difference in your lives.....you have them back girls. Even if things are not perfect they are GOOD and I would give anything to be in your shoes.....anything.

Tracy- I had the same response to Miralax and unfortunately it made me very sick. I ended up in the ER with low potassium and vomiting from the distended belly. I could take tons and tons and nothing. I took six capfuls a day with 10 senna and nothing but scary results to my electrolytes. I hope the botox works for you.....I am praying for you.

I was incredibly nauseated after both surgeries and I am still on zofran and phenergan. I had an ileus both times....vomiting and NG tubes. My nausea continued for almost a month after TC and its 3 months after ileostomy and I am still nauseated. I wish I could eat some of the things you all can....I miss veggies and fruit. I eat turkey, sherbert and ice cream :)

I am praying for you all.......for thise of you with timy bumps in the road right now, count your blessings we have to. Its hard not to let the intestines and BM's control your life, but we have to try....I am trying.

Lizzie

Posted 7/15/2009 2:13 AM (GMT 0)
Tracy,
I took senokot for about 30 years, basically my entire adult life. It didn't cramp me nearly as badly as dulcolax...I tried MOM, and it never helped at all. I really hope your botox shot helps. I'll be going to my surgeon on Thursday and see what he thinks about that. Of course, today was a pretty good day, but I drank grape juice and that usually gets things going. I wouldn't care if I didn't go every day if I just didn't have that horrible feeling of fullness and pain in my rectum.

I went back to the hematologist today and my blood clot in my mesenteric vein in gone! That was the good news. Now I have to have another scan in 3 month because there is a "ringlike area of density in the omental fat of the anterior abdomen" which is most likely fat necrosis, but they want to ensure "a benign course". The doctor said it is likely from my surgery, but we'll know more in 3 months.

My lower left abdomen is really tender and sore, which is why they did the scans the first time 6 weeks ago. Is anyone else really tender after 4 months? It doesn't hurt,normally but when I touch it, or my cat jumps on me it really does.

Also, I had the clotting tests done because of the blood clot. Well, my clotting was ok, but one test was really abnormal....the fibrinogen. Normal is 200-400 and mine was 514. Apparently the increase can
"reflect a ractive state as in infection, inflammation, malignancy or other acute systemic disorders." Also, a high number greatly increases heart problems. My blood pressure, cholesterol, etc. were fine. The doctor asked me how long ago my colon surgery was, because trauma can also make this number high. Has anyone heard of this before?? Could I still have trauma from surgery 3 1/2 months after surgery, which is when I had the bloodwork done?

I think I'm going to stop going to doctors. I go one step forward and 2 steps backwards!! The hematologist, who is also an ocologist, didn't seem worried about the high number on this test, but when I got home and read about it I got scared. He told me he'd send the results to my internist, who I really like and is really the only doctor who I feel like takes the time to explain things to me.

Anyway, off to my surgeon on Thursday and then to the breeders to look for a pup. I'm very excited about that!!

Linda and Marisa,

I know exactly how you feel about the number of times you go to the bathroom. I spent 8 weeks going 15-20X a day, and then it slowed down to 5-8 and that was wonderful...because I always felt empty. I think as long as you feel pretty empty I wouldn't worry if you slow down. My doctor told me if I only went every other day it was fine if I felt ok, unfortunately if I don't go within a couple hours after eating, I feel terrible. I'm so tired of worrying about pooping!!

Lizzie, good luck sweetie. Hodaya, you hang in there. You'll get your surgery, I'm sure of it. You have too many problems for all the doctors to ignore!!

Hugs, Janie
Posted 7/15/2009 2:21 AM (GMT 0)

Tracy,

I used to take 4 capfuls of miralax, 4 tablespoons and 2 amitizas everyday and all of this still wouldn't work for me. And yes your system will get used to the miralax and it will require more for you to have a bm. I've tried many over the counter things as well as many natural things and nothing helped so that is why my GI suggested the surgery; I had never heard of this surgery before he mentioned it and I was at his office 3 hours away with my teenage daughter because my husband had just gotten home the day before from having his hip replaced at 47 yrs old so needlees to say I cried all the way home. I couldn't believe that they actually wanted to remove my colon; I thought not having bms everyday was just normal even though my husband kept telling me that there was something wrong with me. So within 2 mos I had numerous tests and had my surgery.

As far as vitamins, I take a 1+1 multivit. from a health food store as well as an energry supplement called supertonic energy.  This was recommended from the owner of the health food store, my nutritionist recommended a vitamin/juice called SeaAloe, you can buy it online, it's kind of expensive but it has 80 different vitamins and minerals, I take 1 tbls a day, I also take 1/2 packet of Emergen C.  This is the first winter ever that I didn't have strep throat or even so much as a cold or sniffle and I work with first graders so you know how many germs I encounter each day.  My PCP was surprised he hadn't seen me and said whatever I was doing to keep it up because it's working.

Hang in there and things will work out,

Judy

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