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TOTAL COLECTOMY PART 29

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Posted 12/21/2009 8:21 PM (GMT 0)
Hodaya,

I'm sorry you're having so much trouble.  Have you tried the miralax, or whatever yours is called yet?  Give it a try, or try prune juice.  I think for sure the miralax will help you.

I'm still taking miralax twice a day.  It does help me alot, but I still have problems.  If I don't take it, I just don't go.  If I eat alot of sweets, it really slows me down, even with the miralax.   It's been a bad day today because I baked cookies and candy all weekend and brought some in for my co-workers and I'm eating, too.  I'm pretty uncomfortable now and can't wait to get home.  I'm still doing severall enemas a week; have you tried that? 

I see my doctor again the end of January.  I wish I knew if the STARR surgery would help me at all; I always have stool in my rectum.  Last week when I had the anal manometry, the therapist said I had stool in my rectum and I ate very little the night before, and did 2 enemas before going in.  I felt empty, but wasn't.

Better get back to work, just wanted to say hi and hope you feel better!

Lizzie, as always I'm praying for you to feel better sweetie!

Janie

Posted 12/21/2009 8:53 PM (GMT 0)
thank you Janie! i think i'm gonna have to start taking miralax, i don't think i have any other choice right now, but taking it already. it'll be better than eating SOOO much chocolate. i didn't know sweets slow things down. i havn't been eating sweets for a while accept for the sugar free chocolate. i never used enemas, it seems too much of a chore to me, like a whole complicated (and not pleasant least to say) project. it just so amazes me that even w/o a colon we still can't go w/o laxatives!!!!! we're sure such rare ladies!!! are you cooking all those cookies b/c it's Chrismas? holydays always make things worse for me too, with all the extra feasts, just can't be healthy for us and it's hard to avoid completely, so breaking the rutine even a little affects us terribly. i wish there was no need to eat anymore, i wish there was a pill to replace food and by taking it, there's no need to eat, so of course there would be no need to make anythig out either, wouldn't that be so convinient for us....? o.k now i'm REALLY tired rambling nonsense.. lol
Posted 12/21/2009 9:29 PM (GMT 0)
Hodaya, i say try the Miralax too.. my doctor has me taking it 3 times a day... I may always have to take it, but if I can go, I'm okay with that. Sorry you're so down, I just hope that in time things start to work for you (all of us)!!

Janie, are your stools firm or very loose with the MiraLax? My our very loose, but because of the impaction, I need to keep it that way. Hubby made cookies last night, I thought my tummy wouldn't feel good eating so much sweets so soon after surgery - but I seem to have no problem! I don't want to gain weight as I recuperate. I think my rectocele has been corrected.. but hard to really tell when my stools are still so liquidity. My really hard, bloated tummy does feel better.. I imagine I was always pretty packed with excessive stool (according to the past tests I have had and what my surgeon said)
Posted 12/21/2009 9:52 PM (GMT 0)
Hodaya I am sorry you are still having so many problems. Even though I had a few setbacks I feel very fortunate in the bowel movement department. I am still able to go several times a day with the help of suppositories. I can eat pretty much anything but I do stay away from raw vegetables and all broccoli cooked or not. My major problem is eating enough because of my gastroparesis. The surgery made it WORSE! I eat a small meal and stay full for 6-8 hours. If I eat too much I get terrible nausea and will throw up. I hate the full feeling all the time, but I can't take Reglan so not much to do.

Rosemary I believe it was you in an earlier post said something about a drug for gastroparesis that is not approved in the US. Well I have tried it already it is Domperidone. I got it from Canada and it was 95.00 a bottle. It works great but it affects your hormones. I had a non-stop period so I stopped taking it. Just wasn't worth it including the cost.

Lizzie I am really worried about you. I think about you all the time. I sure hope things get better for you soon.

To everyone else I hope things are going ok. You are all in my prayers!

Jen
Posted 12/21/2009 10:22 PM (GMT 0)
Jen.

It is quite common to have nausea after surgery even for normal people. If you have gastroparesis you may expereince a deterioration which is often temporary but may take some time to improve.
Posted 12/21/2009 10:58 PM (GMT 0)
Hi Jen,

The drug alternative to Reglan I was thinking of was Cisapride, but is not FDA approved in the states. The side effects of Domperiodone sound horrid. I would have quit that too if I still had a uterus.

Hi Hodaya,

In answer to your question, words to the effect of "if I had an ileostomy and ate pasta, bread, and potato would I still have to take Miralax?" I can answer that for you. I have had to virtually stop eating potato; it thickens effluent WAY too much. Pasta and bread REALLY thicken the ilesotomy output and I can feel the stoma having to work very hard. If I get too thick effluent, I have to drink lots of grape juice, hot drinks, especially hot chocolate, or eat some chocolate or drink wine or have a Dunkachino (coffee hot chocolate mix). These are the foods that thin down the effluent. Today for lunch I did have an egg and cheese sandwich BUT I ate it with a glass of hot chocolate and everything came out liquid.

The trick to maintaining the flow (should be somewhere like soft pudding consistency) is to drink TONS of liquid. Water is best. Supposed to drink 3 quarts of it per day. This is also to TRY and prevent kidney stones. Did you all know that anyone without the presence of or the use of their colon is at 20% greater chance of having kidney stones? Do you also notice that if you are not in possession of your colon or don't have the use of your colon that your urine output is less than it was when you had your colon? We "Colonless" people are supposed to drink 3 quarts of water per day to pee out 2 quarts of urine. Just thought I'd add a bit to our worries. But this is the truth. Do you all drink that much? I try, but slosh, slosh! But I do not want a kidney stone.

Also to reduce the chance of kidney stones we are supposed to moderate our intake of oxalates which are in tea, coffee, chocolate.......all the poop-thinning foods.

So that's the scoop on your question and likely a whole lot more info that you didn't want to hear :-) (I have had to learn WAY TOO MUCH!)

My computer got infected with some kind of virus so am taking it to the shop tomorrow I think...so if I don't post for awhile, that's where "I'll" be. Good luck Lizzie.

Rosemary
Posted 12/21/2009 11:25 PM (GMT 0)

Hi all...

Well last night was horrible. I almost dragged myself to the ER becuase I could barely dial a number on my phone, but I just kep drinking a fell asleep at 8 pm. I was so nauseated and in so much pain, but i just laid down a a heating pad and the exhaustion from the weekend took over and I was out. I had some extra potassium I found and took a couple pills because I could tell I was low on something and i could not drink enough from the nausea.

I made it though work today....sooo tired and we were so busy. I saw 14 patients. I had no time to call my surgeon or FL and by the time I got out it was too late. I did speak to CC and told them what happened over the weekend. She ( Dr. Zutshi's NP) literally said probably 13 times "I just do not know... I do not make these types of decisions" and "after the holidays and your smart pill results we will talk." I did get an email back from my surgeon here in MI and he recommended seeing me sooner than later for a check-up, he was very curious who I saw at Metro, and he feels bad I am going through all of this. He said that since I am so symptomatic I should be doing fleet enemas daily on top of everything and thought I needed another gastic emptying test, gastrograffin enema (to check both of my anastamoses for stricture) and possible k-pouch....he did/would not say ileo. For now I am still trying to rid of all this poo....I still no do feel empty and have had a near bottle of MOM. I still feel weak and know I am depleted and I know from personal experience these laxatives will eventually stop working.

Hodaya- I feel so bad for you honey...you and I are in the same boat and you cannot keep going on like this. I agree with everyone else that you need to start the normolax. To answer your question I never once took a laxative or stool softener with my ileo. I had no issues unless I ate the wrong things (like pineapple obstruction :) and I could control the thickness of the output based on what I ate/drank. I preffered it on the liquid side as it was cleaner and easier to empty. I could eat much more, just had to chew and be careful. I hope you get some answers and I hope you seek out some advice on this situation. I hate that you are going through this....xoxoxox

Peltz- Thanks for your links sweetie. I have gotten such great info from you and Rosemary. I hope I can find out if I am having pseudoobstructions becuase it sure seems like I am. It may just be my rectum, but all I have been able to eat today is 10 saltines and 6-7 bites of tomoatoe'ish soup. If I do eat is when I start to get the distension. I am very tempted to eat a normal meal before I see my doctors to show them what happens. I have taken pictures and yes, if i dont eat and take lax I do have a normal appearing belly. I dont know.

Rosemary- Love you and hope your pc gets cleared up. It will be sad without you areound here for however long. Thanks again for all your support and advice. You are so sweet. I will take your advice on being affirmative...just have never had a backbone.

Jen- Sorry about your gastroparesis...I wish reglan and domperidone )sp) did not give you such side effects. I know those are the two most frequently used. How is your weight holding up if you ar so full and still vomiting??? Still worried about you honey, but super glad you feel your on the mend!!

Janie...I LOVE YOU!!! SO GLAD YOU ARE STILL DOING WELL~~~

Everyone else. Hope you are having a good day,

Lizzie

Posted 12/21/2009 11:48 PM (GMT 0)
Lizzie,

More power to you for making through a day of work.. WOW! But too bad you did not get to make the calls you needed to make for yourself.

At least you got some empathy from your doc in MI. One thing I learned from someone who had severe adhesions like I had, they said that CC AND MAYO Clinic are clueless when it comes to adhesions, so if that is your problem, then that may be why CC is so confused. I don't know how surgeons cannot wrap their heads around adhesions, scar tissue forms in varying degrees from injury or surgery. It's as simple as that!

Likely you may have some motility issue unrelated to adhesions, and you may be "adhesion-less" but, the above is just what I'd heard about CC from someone with severe adhesions who had been to CC attempting to get help. That's interesting that none of these docs can say the word "ileostomy." It's not like its some foreign concept. I think they view it as admitting defeat. IF you have time, research some of the possible complications with these inner pouches, the list of possible issues go on and on. I'd rather have something external, that if it malfunctions, you don't have to "prove it." It would be visible....no poop in pouch+vomiting = small bowel obstruction (or pseudo-obstruction) but they'd get the idea something was wrong.

If you can stand it, I'd try eating a normal meal prior to seeing one of your docs when you get the appointment. One demonstration is worth a thousand words: severe abdominal distention + vomiting = something wrong. I hate to sound cynical (due to my experience) but it's almost like you have to SHOW them! (Prior to getting my adhesions taken down, one of my docs actually told me "it was all in my head" WHILE watching me vomit INSPITE OF having an NG tube in. (Sorry to be so graphic) but these are the stupid comments I got. So I was actually "demonstrating" and the point STILL got missed. But, I do think one demonstration is worth a thousand words.

I'll hang in until my computer is "taken away." Maybe I can get the computer guy to come to my house and get the little cyber demons out of it. :-)

Have you tried Miralax? It might be better than all that MOM. That stuff is gaggy. Good Luck.
Rosemary
Posted 12/22/2009 12:34 AM (GMT 0)

Hodaya, I could not have bowel movements this spring and had a colectomy, too.  I have a different than normal ileostomy currently (a bag velcroed to my leg and leading to my small intestine), but I have not had any problems with constipation anymore.  I am ready for my brookes ileostomy surgery coming up in June, but for now, I like not having to use any laxatives.  Sugar free chocolate used to help me go after my colectomy, but then t his spring, I could not have a bowel movement, even with M of M.  I am not afraid of having a traditional ileostomy, but I am afraid of having my upcoming surgery, again.  I am so sorry that you're having problems post-colectomy.  I know how frustrating it is after all that you've been through, too. 

Rosemary, it's hard for me to understand how physicians can goof up surgeries and get away with it.  I never had a problem with constipation until 2006.  My gynocologist said that I had a size rectocele and should have rectocele and cystocele surgery.  A week after the surgery I started having constipation problems, and within 2 months, I could not even have a bowel movement in a month and had to keep going to the emergency room impacted.  Laxatives would not work.  Sometimes, having about 8 warm water enamas would work and then I would be worn out and energy zapped.  I went back to my doctor 6 times and he brushed me off, too.  I saw a lawyer and was going to sue my doctor, but ended up not doing it.  I was afraid that my health insurance company would drop me if I sued, and I need my health insurance.  I admire you for trying to make your doctors own up to the damage that they've done to you.

Lizzie, are you still considering BCIR or having an ileostomy surgery, again?  I wanted to do BCIR after you had told me about it, and even had them send me a package about it.  However, now I will never have the option with a permanent ileostomy.  BCIR surgery is not foolproof either, though.  Many people get obstructions easily, and I think that that would become hard to deal with for the rest of your life.  I get obstructions very easily in my tube attached to my leg bag and it terrifies me each time.  I'm always afraid of what would happen to me if I couldn't flush the obstruction out?  If you do consider BCIR, please talk to some people that have them currently.  Most of the people referenced on the web-site gave their testimonies years ago.  It would be heart wrenching and terrible if you were to have the BCIR, only to have more problems.  Maybe, it would be easier to find a surgeon that you trust exclusively, and have an ileostomy that doesn't cause you problems.  You had a difficult time with it earlier, but maybe the stars are in alignment for you this time.  I pray for you continuously and want you to enjoy your life.  If you call the colorectal clinic in Ft. Lauderdale and ask for Dr. Wexner to return your call, he has always done so for me and I'm almost positive that he would speak with you, too.  He's the best there is.

butterfly

Posted 12/22/2009 12:58 AM (GMT 0)

Rosemary,

Thanks for the info on the kidney stones, I produce them all the time and finally have found a wonderful urologist (my 7th) who is doing everything he can to figure out the challenges I have put before him.  I currently have a deformed tube in my kidney that  less than 100 people have; he has placed a stent in there to keep it open and changes it every 3 mos until next summer til he can figure out what he is going to do to keep it open.  He has been in contact with urologists from CA that he trained with.

As for the kidney stones, for people who produce calcium based stones which are the most common-one should limit their intake of tea, coffee, and chocolate; but if you produce uric acid stones as I do, you don't have to limit your intake of those sustances, the main thing I had to limit was spinach which wasn't a problem for me - lol.  The most important thing is to drink, drink, drink WATER, lots of it everyday.  I always drank over a gallon everyday but didn't have an output and was accused of not drinking enough, now this dr knows its because my kidney doesn't drain properly and any backed up fluid can cause stones.

So girls please just remember to drink that water until you can't drink any more!!!!!!

Love you all!

Judy

Posted 12/22/2009 2:26 AM (GMT 0)
Hello Everyone...I feel like there is a post party going on and I am missing out. I just do not have time to read and play catch-up...GRRRR!! I have been so busy caring for my father-in-law - cleaning his bathroom, cleaning his linens, calling his Dr, meeting with Hospice, cooking meals, changing diapers, maintaining meds, and such that I don't have time to read.

Please know that YOU (ALL OF YOU) are on my mind a lot.  I constantly wonder if you're having a BM today, if the chocolate bars are working, if the MOM has pushed through, if your wieght gain is increase, if your depression is getting better, and so on...

When I get a chance, I will read all of your updates. 

For now, please know my thought are with you.

Take care,

Amey

Posted 12/22/2009 2:39 AM (GMT 0)
Rosemary I have definately seen a difference with urine output. Prior to surgery I had to pee all the time. Would get up several times a night. Now significantly reduced. I am trying my best to drink but with gastroparesis that is also hard to do. My stomach has a hard time emptying liquid too. The last two times I was admitted to the hospital I was severely dehydrated. I drink water and gatorade as much as possible. I keep a gatorade bottle next to me all the time. It's just hard. They ran a bunch of tests this last time in the hospital and the GI doc said that my gastroparesis is much worse since surgery. I hope it gets better but worried it won't.

My weight was holding steady at 106 but I dropped to 104 today and am really worried I will be at 103 tomorrow. Just can't eat enough, and I know that contributes to being so weak. I really think I would benefit from a pic line and getting nutrition at night because I don't know how else I can gain weight. I am really worried about it. I hate having no strength at all.

Lizzie I don't know how you made it through work today. If I was in your shape I just don't know how I'd do it. I am able to eat a little bit and still feel wiped out. I couldn't even make it shopping in Target today. I lasted less than an hour and felt like I was going to pass out. I looked at my mom and told her that if I didn't get to the car NOW I was going to drop. Terrible.
I hope you get some help soon. I am really worried about you and think about you all the time. I am praying that you get help soon.

Hodaya I am with the others I think you would benefit from Miralax. I would at least give it a try. I hope things get better for you.

Jenise I hope that you continue to get well. Sounds like you are doing pretty good so soon after surgery.

To everyone else thinking of you.


By the way does anybody know much about pic lines and getting TPN while at home? I have had a pic line the past two times in the hospital but the surgeon seems to think there is a high risk of infection when sent home with it. Anybody got any thoughts on this? I just don't know what else to do but if I lose anymore weight I'll never get better. 5'6" and 104 and dropping not good.

Jen
Posted 12/22/2009 3:09 AM (GMT 0)
Hi all,

So far my computer has not completely crashed.

Judy, thanks for the info on the different TYPES of kidney stones. Good grief. What's going to get us...uric acid, calcium, oxalates? AUUGH!

Jen, I too seem to fill fast. However, on my total gut transit test at Mayo AFTER the 2006 original surgery screw up and prior to getting the adhesions taken down and ileostomy, my stomach actually emptied much faster than it was supposed to rather than slower like in gastroparesis. HOWEVER, I get full really fast and drinking a lot is tricky for me too. It's odd my symptoms don't match that test result, but with my luck with tests, nothing seems to match anything. Maybe that was read wrong too. But little sips of water through the day are better than big gulps. Sorry, no knowledge of pic lines at home. Have you tried Boost and all those energy drinks? There are about 250 calories in each one. How about milk shakes with ice cream? I have this protein powder called Show me the Whey (cute name huh?) Each scoop has 25 grams of protein, so with yogurt that makes 35 grams. We are supposed to take in about 50-60 grams or protein per day. I try for that. That helps with energy.

Butterfly, actually my insurance company LOVES it that I'm suing because THEY get repaid the $100,000 in medical expenses I've had so far. I PRAY I HAVE NO MORE, but they are looking forward to being reimbursed by the defendants' malpractice insurance company. I am determined to get all my 5 defendants. You cannot mis-read defecograms for people. If you are a radiologist who does not know the difference between a loop of sigmoid colon and a small bowel loop, you need to go back to school. If you are a surgeon who, when into the person, sees that they have no redundant sigmoid colon you can't just remove it anyway, then do multiple unconsented procedures that don't need to be done. Then not follow up to complications. You also cannot commit insurance fraud and tell Blue Cross and Blue Shield that the patient has a bowel blockage and you had to give them a colostomy. (Believe it or not that is what my original surgeons told BLue Cross and Blue Shield. Add insurance fraud to the charges! What they did LEAD me to needing the ileostomy but that was a separate issue done at a separate hosptial.) THEN the hospital that the 2006 original surgery was done at KNOWS these 2 original surgeons have 8 law suits on them AND complaints on them with the Mass MEdical Board, and the hospital does nothing! MY WORD! How can patients be safe! I have soooo many dietary restrictions that I lack the original energy I had prior to 2006. I SURE HOPE I LIVE TO SUE. THe whole process takes 3-5 years. Patients can be so injured that they would die in the meantime and the case could get tossed. I told my atty that if I succumb to related causes to pursue the suit with punitive damages as a wrongful death suit. He said he would. Even if I went of other causes, he could still proceed because the events did happen. I sure hope I stay OK but with such a different gut system and potential for adhesion obstruction, God only knows. My case is the weirdest anyone has ever heard of legally. But I think is only a sample of all that goes on and is so smoothly covered up. I hope things work out for you.

Amey, Good luck with all those responsibilities. Now is when people say "take care of yourself" which is true but like......when?....how? Been there. It's rough.

Rosemary
Posted 12/22/2009 3:53 AM (GMT 0)
Judy,

I just thought of a question, are there blood or urine tests that can be done to see if one has too much uric acid, oxalate, or calcium in the urine? Sort of a screening test one could get every so often to see if they needed to cut down on one of those elements in an effort to prevent kidney stones?

(That in addition to drinking a ton of water per day)

Rosemary
Posted 12/22/2009 4:05 AM (GMT 0)
Rosemary,

 

The initial test to see what kind of stones you produce is a 24 hour urine test, then many blood tests and urine tests follow but I don't really remember at this point what they are all for, I'll have to look at my paperwork on the fridge but it's getting late and I have my class Christmas Party tomorrow and was just sending an Edible Arrangement to my Urologist for Christmas so I've stayed up too late already and 4:30 comes way too quickly.  I'll try to get back to you tomorrow but I'm tutoring a little boy after school and have to finish up getting my aides some gifts so I might be on late tomorrow or on Wednesday.

 

Hope you have a nice day!

 

Judy

Posted 12/22/2009 4:39 AM (GMT 0)

Hi ladies....

I am with you on how I managed to make it through the day.....I feel like tomorrow is going to be much worse. I feel so darn weak tonight again and I only went once from the MOM today and had to take more. So far, no luck tonight, but I also have only had about 500-600 calories and worked 10 hrs on my feet. I am sure everything together has to do with my weakness. I just drank a big bottle of G2 and hope it will help, but I also have had that darn pain again and had to take some percoet for the pain. I spoke with my director of nursing today and yes, i will lose my job if anything happens....but she said its more of a paperwork thing and I can re-apply....but it saddens me so much to even think of losing the job i love so much. I think what got me through the day was my patients faces when they saw me and all the love and support from both them and the staff. Again, this can only go so far...i hope my body makes it again tomorrow.

Lori- I am thinking of the BCIR still, but also a permanent ileostomy. I am not as scared as I was when I woke up with one emergently. I know if I had a properly constructed stoma I would be ok... I have been talking to many BCIR patients and have had very positive feedback, but everyones situation is different. One requirement they have before even thinking of you as a candidate is if you have motility issues you have to have had a ileostomy that functioned properly for you as mine did. Its still scary to think of all the complications, but its still a thought of mine as I am 29 years old. I think my surgeon mentioned it because I truly think, like Rosemary said that a ileostomy is "defeat" to them. I think he really cares for me, but i feel he thinks my issues have defeated him as a surgeon and he wants someone else to figure it out. I think of you daily and what you have gone through, and I remember like yesterday when I had my ileo and you were going for yours. I heard Wexner is the best of the best and I feel so good knowing your in the hands you are in....

Rosemary- I agree that demonstration and showing my surgeon here would be worth it. I talked with my hubby tonight about it and he agreed. I just cannot stand thinking of the pain it puts me in, but then again it would be worth it as he has not seen my abdomen mlike this since April when I ended up with the ileostomy after 8 days with a NG and paralytic ileus. I hope the demons get out of your PC quick. I admire your strength in your lawsuit. You are so educated and a wealth of knowledge to this site and to everyone. I pray each day you get what you deserve out of this for once.

Jen- I do have knowledge on a PICC line. Being in the cancer world of nursing sine graduation from nursing school has given me much experience with them. Most all of our patients when I worked in pediatrics had some form of a central line be it a broviac (more permanent PICC line in the chest, port-a cath (also in the chest, but under the skin and accessed with a needle, and also PICC lines). Any type of central line puts you at risk for infection, but so does a regular IV. Any break in the skin leaves you at risk for organisms to grow. I believe in your case you would benefit from some type of  central line. If it were me, I would opt for a port-a- cath. I mentioned earlier it is a device place in an outpt procedure that takes about 30 min to place. It is placed under the skin and is in your chest (usually right above the breast area and below collar bone. It is accessed with a huber needle and this needle can stay in for seven days without needing to be changed and a dressing is covering the needle at all times. It would leave you with two small scars, but they are nothing compared to what you have and would fade quickly. In my opinion they are the least risk for infection if that is what your doctors are concerned about. This way you could learn (and its easy) to hook yourself up to TPN for 12-14 hrs a night and unhook in the morning. After 7 days an at home nurse could come change your needle and dressing until you reach a desired weight and strength. The same could be done with a PICC line, but the dressing would need to be changes and area cleaned I believe every three days. Detecting infection is usually easy, but with all inscisions, central lines, etc because its directly into your blood stream you are at risk for sepsis. I think you could properly care for one of these lines and would benefit greatly from the added nutrition. They have discussed this with me and I am nowhere near your malnourishment. You obviously cannot keep the weight on right now. My friend had a PICC line all summer for SMA (the disease Sarah spoke of) and she was able to get back all her weight and never once had an infection. She had her TPN going most of the day and carried it around in a little backpack. Any questions you have I can most liely answwer. I just want you to get better and you are so cachetic you are not going to be able to get there unless you have proper nourishment. If they will not do this then I believe you will end up back in the hospital eventually only to re-track what you just got done doing!!! Sorry to be so blunt, but i worry about you.

WOW! that was long-winded. I better stop my ranting. I hope you all are well. I love each of you so much and pray for you all daily. I, like Amey, find myself talking about all of your struggles everyday throughout the day. I wish we all were closer to take care of each others kidney struggles, peeing issues, emotional issues, pooping issues, family pain, hopelessness, and just sometimes be a shoulder to lean on without having to explain anything. I thank each of you for supporting me....your all I have besides family.

Lizzie

Posted 12/22/2009 1:32 PM (GMT 0)
Lizzie you are not ranting I agree I need some help. I am so weak. I am going to talk to my GI doctor and my surgeon about it. I feel like something has to be done. I cannot take in enough calories, and I feel like crap all the time. I have zero energy and don't feel like I will move forward until I gain weight. My husband just looks at me and says, "you are just doing everything you possibly can right now to stay out of the hospital at Christmas, aren't you?" and I respond, "YES...I wouldn't go to the doctor right now for love nor money because of the fear of being put back in the hospital!"

Rosemary I have Boost, Ensure, Carnation Instant Breakfast, etc. Problem..I can only drink half of a Boost or Ensure and they are small bottles. I get through half and am so full I can't drink anymore. One would say wait a bit and drink some more...not possible takes 4-6 hours to empty liquid and 6-10 hours to empty solids. I have been researching the gastric pacemaker...I think its called Enterra Therapy...something like that. I don't know but it is promising but there again its another surgery. My body can't take another surgery for a couple of years.

Oh well...I will keep you guys posted on what the doctor says. I go to the surgeon the 29th, and I need to call the GI today to schedule an appointment.

Lizzie you need to gain weight too. 500-600 calories a day plus working...honey you cannot continue like that. I don't know how you are doing it...honestly I think you need to be at home taking care of yourself but I understand the fear of losing your job.

Thinking of you all. Amey next time I can't sleep I will make sure to get on FB and we can chat about staring at the clock and listening to our husbands snore!

Jen
Posted 12/22/2009 1:56 PM (GMT 0)
Jenise,
Yes, my stools are still very liquidy, at least most of the time. How much miralax are you taking each dose? I take 1 tablespoon full (or one lid full) 2x a day, but even with that, I have trouble getting stool out sometimes. If I don't eat alot, I do fine. It's just if I over eat, or eat alot of sweets, or chips (basically all the junk food I love!) then I have problems. Yesterday one of the guys I work with brought me a grilled Boston Butt roast and it was delicious, but I didn't digest it very well. When you take the miralax, how long does it take to work, and do you go several times after taking it, or after each meal? I'm trying to figure it out, because as always, things change after I take them for awhile. At first I went about 4 times after taking it in the morning, and then a couple more times during the day if I ate something, and then I'd take more at dinner and go a few times after that. Now I don't go as often, and hardly at all except right after taking in the morning and evening. I'm wondering if I should add some at lunch, because sometimes after lunch I start getting rectal pressure again; not as bad as before, but for awhile I didn't have it at all.

I am so much better than before, but it's very hard to socialize alot (if eating is involved). I'm ok to go out to dinner, and then go home within an hour or so, but as far as going out to eat and then go out afterwards for anything; I'm just not able to do that yet. I have a charity function next month and we'll have dinner and then the auction and entertainment and I'm already concerned about how to handle it. I guess I just won't eat dinner, but I hate living like this. I'm not trying to complain, because again, I feel much better than before surgery and taking massive doses of laxatives and praying they'd work was horrible. This is better, but still can be challenging.

Lizzie,
I don't know how you were able to work honey. Don't push yourself too much. I'm so glad you finally have a doctor who seems to be concerned, and I hope he'll get you all the testing you need to find an answer. IF you have to go back to an ileostomy I doubt if you'd have the same issues with your stoma again. Just make sure the doctor doing it knows about your previous issues. BUT maybe it won't come to that. If it does though, I'm sure this time you'd be more accepting because you've done everything possible.

Amey,
Thinking about you and your family issues. I know it seems overwhelming, but I hope Hospice will take some of the burden off of you. I'm sure they told you, but there are other organizations who will come in and help bathe and take care of your FIL for you. There are even organizations who will sit with the patient so you can get out. If hospice hasn't mentioned it, ask them. They provide so much information.

Judy,
HI and happy holidays! Miss you around here, but I know everyone is so busy, especially this time of year. I'm so glad you had a nice holiday with your daughter! Thanks for all the info about kidney stones; guess I'd better start drinking more water. I try to drink alot and some days I do better than others. My husband had one kidney stone and he was in so much pain.....I don't want one of those!!

Jen,
It sounds like you need some help with nourishment. As far as your energy level; you've been through a lot, and you're not getting the nourishment you need. I was doing great after surgery and I STILL was exhausted for a good 6 weeks. I know alot of people went back to work after 6 weeks, but I don't think I would have been able to. It will take awhile for you to get your energy back, especially with your setback and not being able to eat.

I also was diagnosed with gastroperosis (that's with the egg/radiation, isn't it?) Anyway, when I took the test at Shands in Gainesville, FL, the egg wasn't moving at all and after 45 minutes they gave me some erythemisin (sp) and then the egg moved through me. I tried taking erythemisin afterwards for awhile, but it made me feel naseous all the time. I'm not sure how the gastroperosis affects me now; I don't have alot of side effects from it that I know of. I just find it so interesting that so many of us here have had all the tests for various issues, and that it must be true that when part of your digestive tract is messed up, it affects other parts as well. I have had alot of problems with GERD, has anyone else?

Hugs to everyone I missed, but I've GOT to get back to work. Hope everyone has a good day.

Janie
Posted 12/22/2009 3:01 PM (GMT 0)
Hi Jen,

Wow, you do have slow gastric emptying. Yikes! Gastric pace maker sounds like quite an invention.

Did your gastroparesis get worse after each surgery?

There are sooooo many nerves connected with the human gut, had I known all the anatomy I now know I would never have had ANY surgery on anything even my hyst in 1995.

Good luck, Rosemary
Posted 12/22/2009 4:44 PM (GMT 0)
Amey, I'm sure you are exceptionally busy, understandably so. Hope you can get a little time for yourself.. even just a quiet lunch or dinner out, you need that! I really feel like I'm doing great recovering. I'm tired, don't feel like going out shopping or anything.. but feel pretty good! I really am catching up on some tv shows I have had recorded forever! I don't need to see the doctor until mid Jan., as I had all the staples removed the day I went home. My appointment is w/Jose.

Janie, they have me taking MiraLax morning, noon and night (3 X's) I just never know when I am going to go! Sometimes it is right after I eat or take the MiraLax.. other times I worry! Like this morning, I ate, and took my MiraLax.. and NOTHING! I just get worried when I'm not going. I'm was told not to put anything in the rectum (suppositories) so I'm depending 100% on the MiraLax. If I don't go this afternoon, I might take some MOM.. which they said was okay. When I do start to go, it is several times within a few hours. Yesterday I went 7 times - from noon till 6 PM. When I go, it is usually just small amounts each time.

Rosemary, why did you have a hysterectomy? Mine was really elective.. my surgeon would have kept it if I desired, but it was prolapsed, and I did have a couple abnormal pap tests.. and heavy bleeding.. so at my age, I just wanted to be over the monthly periods, cramps and bleeding. I don't miss it at all.. and love that I can go somewhere without the worry of heavy bleeding plus love my panties have no stains!
Posted 12/22/2009 4:52 PM (GMT 0)
Hi gals, trying to catch up on you all. Im so sorry that so many of you are having problem after problem. It is so awful that we all go through the surgeries we do and still continue to have problems. I will say that every one of you are inspirations to me.

Jenise-How are you recovering? I was reading how that nurse was so rude to you. I too had that response when I was in the hospital.

Jen-I was also diagnosed with gastroporesis in Jan of this year. But, it doesnt effect me as badly. But, I dont drink as much as I should either. I also have the terrible back pain. In my lower back. I dont know if its just cuz there are so many nerves in there that are affected when we go through this surgery. I take vicodin everyday cuz I am either cramping or have back pain. I think I will always need pain meds. And also the phenergan for nausea.

Lizzie-hope work is going well for you. But, if you lose your job youre just going to have to focus on your health. You have to get better worse than any job.

Hodaya-how art thou? Are you still having issues with going? How is work going?

So, I have been eating a lot and I mean a lot of froot loops. I have this incredible craving for them. But its the ones with fiber is them. And I have been going poo great. I dont know if its just the added fiber or what but it has been great!! I eat them for breakfast and usually dinner. I know I am a dork, but it works. Been feeling pretty good since surgery. My doctor gave me some pictures of what I look like from the inside. You could definetly see that where the staple was poking through was very irritated and had pus around it. It was pretty cool. I am sick and demited that way. Thats why I love being a dental assistant. I get to see gross stuff all day!

Hope you all are ready for Christmas. I am not!! Just barely got the tree up and I have a ton of wrapping to do. Love you all!
Posted 12/22/2009 5:49 PM (GMT 0)
Janie, I forgot to add, I do also take 1 cap full with each glass I take.

Marisa, so what do they do about the staple? Will you continue to have bleeding? I never thought about the staples inside us.. do they just stay forever or eventually dissolve? I had a weird craving for tomato soup in the hospital, and spaghetti! I always think our bodies are telling us something about food cravings.. but fruitloops!! LOL, I don't know about that one!! I too am gross/interested. When the doctor manually cleaned out the impaction.. he was amazed and asked if I wanted to see what he removed. Yuck.. the whole room stunk, but my curiosity did get to me and I did look! Thanks for asking how I feel. I really feel like I'm doing excellent for an old gal of 48! I went for a 15 minute walk today on my treadmill.. very, very slow.. but it felt good. I probably over reacted with the nurse(s) - which I think now it was just one.. in the end - it was clear she should have shut her mouth. Actually, they all kept asking me, "have you had a BM yet" all day long.. I kept telling them they would be the first to know!! Finally, doctor told them to stop aasking me.. thinking they were putting too much pressure on me... but I had a real reason that I couldn't go! I would have never went with that impaction. Maybe they learned something from it.. I guess it is very uncommon according to them. So glad I'm home.

Jen, I'm sure you're doing everything to stay out of the hospital! I was there long enough too, and not nearly as long as you!
Posted 12/22/2009 6:40 PM (GMT 0)
Hi Jenise,

My hysterectomy, in retrospect was completely unnecessary and was the sole cause of my bowel issues, which were the mis-dx'd (I actually ONLY had a rectocele that did not even trap contrast, but the misdiagnosed sigmoidocele, and all that followed.)

However, on the second day of my periods (during SOME periods, not all) I had SEVERE bleeding with huge clots. If I sat on the toilet blood would rush out of me so fast the level of the toilet water would rise. (Sorry to be soooo graphic, but that was why I got so scared.)

Then I had ultrasounds from the outside and transvaginally. It showed fibroids. I consulted with 2 docs. Both said hyst. back in those days, the records were shipped from doc to doc. I never saw them.. ONLY after surgery did I find out that the biggest fibroid was only 2 cm and the rest were a few millimeter fibroids. THEN I found out that if the problem did not occur every month, it was likely just a shifting of hormones as I was 38. The little fibroids were always there, but the flooding did not come with every period. SO that was another unneeded surgery unknown to me at the time.

I was not warned of rectoceles and such at the time and unfortunately was not on the internet at that time to the point I am now. I also was not aware that unavoidable injury to nerves that connect to the colon happens when someone has a hysterectomy. It is some nerves in the hind gut. In 2007 Hyster Sisters have put out this fabulous video about all the structural and nerve issues that can result from hysterectomy and affect bowel function. Had I seen that back in 1995 when I had my hyst i would not have had it. I never had kids so had no predisposition to prolapse.

Any trouble I've run into in life has been through elective surgery for benign issues but not being given the information I should have been given, or being given wrong info, I naturally made wrong choices. So tragic. As I have great DNA and long-lived healthy heredity. It's all so unbelievable.

Glad you are doing well. The bowel irregularity may be due to you having a low anterior resection rather than just removal of your sigmoid. I believe in one of your posts you told me you had a low anterior resection. With low anterior resection, they take off the top of your rectum in addition to removing the sigmoid. It's surgery done lower in the pelvis so also disturbs some nerves. Risks of low anterior resection (that they also did on me...mine unneeded as found by my medmal reviewers) are incontinence, irregularity, and increased risk of stricture .......none of the risks I was told of. You have escaped the stricture and the incontinence those are the two big ones. But the irregularity may just stay with you or could resolve in a year or more. Just out of curiosity, when you feel up to it, find out how low your anastomosis was made. Mine was 10 cm up from the anus. My original surgery actually removed 2 inches of my rectum that I did not consent to.

Also nobody told me of the staple issue even though I specifically asked if permanent foreign substances would be left in me. I told my original surgeons of my many allergies and tissue reactions and specifically asked "Will foreign material be left in me?" They did not tell me, nor any of my other consults. I did not know at the time how to use google and get images or videos of low anterior resection. Had I, I would not have done it. The staples joining your shortened rectum and your descending colon are permanent. They are likely made of titanium. So if you ever need an MRI it is safe to do.. They aren't the metal that prevents you from having MRI's. Do check this out with your surgeon though prior to having an MRI if you ever need one, just in case your staples are different than mine. BUT Who the H--- would think that they would staple colon ends together? I asssumed sewed like everything else. Auuugh!

Glad you are doing well. Just go with the irregularity. Also reduced volume output (multiple small trips) is typical of low anterior resections because the rectal length has been shortened. If you did have a low anterior resection rather than just sigmoid resection, had you been told all this? I'm just curious.

Take care, Rosemary
Posted 12/22/2009 6:41 PM (GMT 0)
Lizzie, Just curious did the camera pill come out when you used the laxative? Good luck at work today. Rosemary
Posted 12/22/2009 11:13 PM (GMT 0)
Lizzie

it sounds that if you had no transit problems with your ileo your rectal obstruction plays a a major role in causing your pseudo-obstrcutions. Maybe you are lucky and it is your severe ansimus that got back; pelvic surgery increases the risk of having nerval damage to the pelvic region resulting in outlet problems even in otherwise healthy people.
So maybe the surgery had brought your severe ansimus/rectal obstruction back.

However it could be the case that your small bowel has deteriorated since surgery and has become slow, too - subsequently to the constant rectal obstruction which also slowed/slows the proximal bowel and maybe this slow tranist has become permanent and irreversible due to tissue damage of the small bowel.
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