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Posted 3/21/2010 11:16 PM (GMT 0)
Butterfly,

Yes, we do need to smile. AND you are absolutely right about the people with heart issues. People with gut issues also face a lot of "Oh, it's all in your mind" crap by docs who don't know what to do for them. People with a heart issue never are told that. Heart issues are more cut and dried. I'm praying I stay well and live to get this suit done and won, then get some action against these 2 docs from our state medical board. I am about their 10th or so suit. That is way too many. Then I HOPE I can make a dent in the field of surgical consent forms warning patients that adhesion small bowel obstructions are part of the risk of ANY pelvic or abdominal surgery. This is never mentioned. There are 3 surgeons, I THINK from Cleveland Clinic who were working to get a bill passed through congress that this should be put on every consent form. I could be wrong, but I THINK Steve Wexner was one of them. Have been away so long and into so much now, no time to check but I will find the article. THis is vital info that is lacking regarding patient consent. Adhesive small bowel obstruction can kill people. The number of elective surgeries would plummet if this appeared on consents so I applaud these surgeons for wanting to do this. I think they need a patient like me who has experienced this first hand to work with them to get this bill passed through congress. So GOD WILLING, I will stick around and be well and get these goals done and travel more and dance on more cruise ships.

If I were you I would ask Dr. Wexner for Odds that all these terrible things will happen or won't. SOmetimes they have to mention stuff even if there is a 1% chance of it happening. Also ask what are the odds that this will go well and you will have a normal working ileostomy? Those odds may be 99%. Unless he mentioned odds in your March 8 discussion or in the letter, give him a call. You have one of the brightest docs on the face of the earth AND the impression I had of him was very personable. You may need to hear odds before you are able to put this issue aside in your mind. Just tell him you need to enter into this as confident as you can, just like any patient would, and you need to know odds. Give it a shot, you have nothing to lose.

Mother Hen (Rosemary)
Posted 3/22/2010 3:15 AM (GMT 0)
Sorry been away...just have been resting and not feeling the greatest. Its still an accumulation of everything....I am making my app for the Rheumatologist this week as my joint pain is not any better and as the days go on and my patch gets closer to being changed the swelling and pain gets worse. Also, I have been so worried about my pouch that I have been settingmy alarm and getting up every 3 hrs all night long and not sleeping well at all as it takes time to get back to sleep. My pouch is working....I have had a couple episodes in the last week where it has been really full and I get nauseated putting the tube in and then puke about 30 min later....its just not healed and grown to the size it needs to be which i know will take a good 3-4 months. I soent a lot of the weekend sleeping  and I attempted to go out to dinner Fri to celebrate my SIL getting a new job and visit with some friends from Texas. I got to my inlaws shortly after dinner with everyone and they continued to drink and party and socialize and I was just in pain from my joints and fell asleep at 95 pm which is not like me. My MIL said she thinks my color has gone again from my face and that I looked thinner and kinda grey and dehydrated. I am drinking good, but still only peeing twice a day, but last time I had my labs drawn everything was ok as far as I know. I asked for a copy, but they would not give me one for some reason. I see the pain clinic doc and mypcp does notwant to keep up my pain meds until I see him. I have one patch left and so I have no idea what I am going to do as without it I cannot bend my fingers and my left hip primarily can not walk well when the pain patch wears off....I think though if I go in and see him he will understand as he has known me and knows I never ask for pain meds unless I need them. Also, I think its just an accumulation of the last 2 years and 4 surgeries and never fully recoering and being so sick that this recovery has been the hardest for me overall. With all the complications and how ill I was going into it I can barely get through 2 hours on my feet without draining any ounce of energy I have and color and then the joints kick in and I feel so weak and tired. When I was in the ER Tues the doc said I appeared so sunken and dehydrated. They have just done basic labs so maybe something else is deficient in me and causing me to feel the way I do still. I am so lucky my long term disability was approved and they have been so nice telling me that they will just check in every 3 months to see  how I am in terms of going back to work. As of now, I cannot even think of it.....I could never get through a day at work in this shape. I have no idea when I am going to just catch a darn break.....but I take it one day at a time, stay positive and do my best. I miss all you girls so much and Rosemary I am so glad you are back and that you had a wonderful trip.

Lori- I was crying telling my hisband about your letter Fridayon our way to dinner as we started out for our original ileos about the same time and I know how difficult things have been for you and we were both in counseling together. He was concerned for you as well as your husband, but like you all we did much research before deciding to go for the kpouch, which I was told my many doctors not too go for and just to go for the ileo. Its so hard to make that decision, but I truly believe that you are in the best hands possible and that Dr Wexner is an amazing surgon, but I also agree with Rosemary that to ease this insomnia, frustration, fear, etc that you need to call him and have a one on one converation and ease you mind about the letter. The info relayed may not be different, but it may just be better hearing it out of his mouth and like I asked Dr. Dietz "Are you confident in doing this surgery or do you feel I am going to be worse off and should just stay with the ileo"......reassuring yourself with him and his confedence that he is doing this because he thinks you ar ready may help you through these upcoming weeks as you need to stay as string as you can emotionally and physically befoer this surgery. You need your nutrition at its highest level as well as your mind which is so powerful in healing. I pray that you can call and have this conversation, meet with your therapist and have a better mind frame sweetie. I am right hear for you anytime you need me....

Janie- I am glad you went to the ER and that Rosemary was there to force you on in....everyone in my family has had it and more than once and I spend all day with my mom at home and at first I thought I had the flu with aches, nausea, etc, but now it is going on three weeks and know it is something more going on in my body. If you still feel weak go back in and get some more fluid sweetie....without that darn colon you need to never wait (I am one who needs to take my own advice) and get in there once you start feeling so weak. I think of you so often and hope your doing better....keep us posted love.

Rosemary (mother hen)- So good to have you back. I am so glad you were able to get as quick of help as you did while on vaca as that is scary. I am glad they took such good care of you. I feel I get even more dehydrated with this new surgery and I am not sure if this is because of the manipulation of my small bowel and the use of it in the pouch, etc. I have no idea what is going on with me, but part of me thinks its just a very slow slow recovery for me and the other part knows something is just off. I always know it is, but it seems to take so long to surface. Its as if I am having some type of immuno response to something???AHHHH O have no idea. Well back to your case....keep us posted. Its still so much for me to understand, but all I can do is pray that you get the results you deserve and those doctors get what they deserve. You are so strong and so needed on this site as you can see....

Tracy...how are you doing honey? You need to show Rosemary thse pics of your belly and she, like me, will tell you just how bad you need to be having surgery intervention or something done soon!!!!

Thinking of everyone else.....worried about Hodaya (is she without a computer????), Amey, Judy, and everyone else that has not been on in a while. Hopefully they are all doing well. Love to you all,  my family.

Lizzie

Posted 3/22/2010 3:20 AM (GMT 0)
Mother hen,,  thanks I don't know how I got that mixed up but blame it on the meds...lol

Best of health to you my dear...someone on here had a total colectomy so want to chat with that person..

Does anyone know what happened to JT80?????

Worried...

Leslie

Posted 3/22/2010 3:51 AM (GMT 0)
Hi Lizzie,

Alll I can say is that every medical professional that you come in contact with BETTER BE darn NICE AND RESPECTFUL TO YOU LITTLE GIRL!!!!! Or I will personally get after them. You have had WAY MORE than your share.

I am typing up endless INERROGATORIES for my case. Been at it 9 hours. It's where I get to tell MY side of the story. MAN am I letting them have it ALL WITH THE FACTS, NOTHING BUT THE FACTS! MAN DOES IT FEEL GOOOOOOOOOD!!!!!!!!!!!!!

Tomorrow I will ask my hair dresser about what she gets for RA infusions if you really have that. Also get your B12 and methylmalonic acid checked for pernicious anemia. MMA will be high and B12 low if you have it. Also get checked for presence of antiparietal cell antibodies. This will confirm it. The whole system can go down if you have this and don't get B12 injections. Also ask to see a urologist; I'm as dehydrated as they come and I pee a lot more than twice per day. We need to watch out for kidney failure. BUN and Creatinine tests and likely a ton more I know nothing of.

Well back to my INTERROGATORIES. IT is like reliving the whole nightmare. Hope I get a settlement; A court trial would not be fun, but those 2 original docs WOULD get publicity so I'm up for whichever. JUst gotta take care of me and eat more protein. then cruise and dance more. What can I say.

Love you. Hope you find the person you need to communicate with Leslie. Good night all, Mother Hen
Posted 3/22/2010 3:47 PM (GMT 0)
Leslie,

I had a total colectomy last March for colon inertia....if you want to chat, I'd be happy to chat with you:)

Posted 3/22/2010 4:52 PM (GMT 0)
Janiepain
    Thank you for answering me back....So how are you doing a year out?

1.  I know its trial and error at this point of what to try to eat , but will vegies, and lettuce always give me cramps...but have not tried a salad, just lettuce very little on a hamburger.

2.so it is day 31 for me and I am feeling good except very sore at the belly button area, was yours tender longer than the rest of the scar.

3. How long before you were able to walk further than a couple hundred feet without being worn out, I take a shower and try to put on make-up and I have to sit

4.for a bit , that wears me out.'

5.How long before you can exercise your stomach muscles..

6. Do o you get dehydrated very easily?

7. Do you still have to eat a sm. something every few hours or will it let you eat more than a oz as time goes on.

Did you have to go to the potties for poo in the middle of the night because I never do.  My doc asked me how many times I get up at night to go and I said I dont, he was amazed, so is going at night common?

8. Does it do anygood to take vitamins?  do they absorbe in what I have left.

Well I have more questions but I would like you to give me a summary of what you went through during your experience.

Thanks so much for contacting me..

Leslie

Posted 3/22/2010 7:56 PM (GMT 0)
Leslie,

I think it's really a little different for everyone, but I'll give you MY scoop!! At day 31 it sounds like things are pretty good for you, and were similar for me. Let me give you a little update on my recovery and then I'll answer your questions. I started out going 20X times a day and it really didn't seem to matter what I ate, but I never had to get up during the night. After 3 months I slowed down considerably, and by month 5 I had to start taking miralax to have bowel movements again. Things are ok now, not great, but ok. SO...

1. At day 31 I wasn't eating much lettuce either. I gradually small salads after a couple months, and I never noticed any change. Nothing really ever gave me cramps, except fried oysters in month 4! But I ate them again because I love them so much:) Meats in general tend to stop me up so I didn't eat alot of hamburgers at first, and now only sparingly.

2. My surgery was done laproscopically, and my belly button area was tender for awhile; in fact in month 3 I had a CT scan done because I was still very tender. They found a small blood clot, which dissolved itself, but I don't think it was causing the pain, it was just found by coincidence. I think it's very normal to be sore for quite awhile.

3. I started walking within 2-3 weeks and tried to walk for about 15 minutes at a time. I took it very slow at first, but I did it! I can honestly say that it was a full 6-8 weeks before I felt somewhat normal; I was exhausted alot of the time. Then one day, all of a sudden, I felt like myself again!
4. Think you skipped one:)
5. Exercise??? What's that:) I have to admit I'm not a big exercise person, I just walk. I was so happy that with the surgery I lost those extra 10 pounds I'd been trying to lose for years. so I thought i was looking pretty good!! Although I will say, my tummy is much looser than I remember it being before. I think one of our more "fit" members will have to answer that question, but I imagine it depends on whether you had open or lap surgery. I wouldn't do anything for a couple more weeks either way though, especially if you're still sore.

6. I live in FL, so during the summer months especially I drink lots of water, especially if I'm outside. I just had to get IV liquids this weekend because I had that nasty flu bug and it dehydrated me. Normally I do fine though. If I start feeling leg pain, etc, things that make me think I need more liquid, I drink more, and I do drink gatorade if I'm feeling dehydrated...espcially at first when I was going to the bathroom every 30 minutes.

7. I started out eating very little at a time, and I kept a daily food log for MONTHS writing down everything I ate, how much, and what time. Then I wrote down how many x after each meal I had to run to the bathroom. I had to go ALOT and my rear end stayed raw for 3 months. I found this really great calmoseptine ointment (thanks to someone on the board here) and it is amazing. I still carry some with me just in case I get sore.

I still take all my vitamins and my doctor told me the small intestine absorbs them, so it was still good to take them.

Did I read that you have a j pouch? For some reason, I was thinking you said you did but maybe not. I don't know anything about them, however.

I'll be glad to answer any more questions you have....just let me know!

Janie
Posted 3/22/2010 9:44 PM (GMT 0)
Janie, wow first of all thank you for your information.  I know he said I had some kind of a pouch inside and I think its the J one just incase my intestines failed.

I started out with 10 bowel m. a day for about a week and now I am down to 6 or 7 but usually in the evening but I am sure that will change as I get more active.

I am surprised that you have to take Mirilax as my doc said I will never get constipated.  And by all rights I would have gotten plugged up because I eat a lot of bread.  I hardly ever go pottie right after I eat but last night was a exception but then it was around the time I usually have a bm.

I got cut from stem to stern, no laporoscopically for me.  That is why my belly button area kind of sore, plus it feels thick in that area.

I have not had any raw vegies except on my burger the other night and woke up in the morning cramping so I fig. the lettuce or the burger or both gave it to me.

Right now I am just trying to improve my strength.  So they tell me that I will never probably put any weight back on did you find that to be true?  So far for me I am still loosing down to 133 and I am 5'10 so dont want to lose any more.  I eat fating stuff like pies and cake and cookies and it makes no diff.  I have not tried any fried foods yet, but going to.

I am a avid water drinker so I get lots of that.  But were you able to only eat like a oz or 2 at a time...that is all I can handle.  My healing is going good just more of muscle aching where he cut through all of them other than that I feel wonderful...did you feel better immediately after surgery?

Ya, I want to go to the gym but dont know when he will let me do that , probably not for awhile.  But noting is going to tighten up my abs,,,, its a mess...LOL

I will have to ask him when he is back from vacation.

How long did you wear the elastic band around your waist, it feel good on when I am up.

Leslie

 

Posted 3/22/2010 10:22 PM (GMT 0)
Leslie, Lizzie and I both had colectomies, too.  Mine worked for 2 years and I felt the healthiest ever.  I didn't eat red meats, lettuce, or popcorn.  Almost everything else, I ate.  I love my diet cokes, but stayed away from them because they made me really gassy.  I started out going to the bathroom about 15 times a day and then went back to nothing, again.

I wish that my colectomy would have worked forever, but there are not any guarantees with these colorectal surgeries.  If there were, I wouldn't be so frightened now.

I really hope that your colectomy will continue to keep you healthy and having a good quality of life. 

Alot of people on this forum have had continuosly successful colectomies.  Lizzie and I just weren't so lucky.

butterfly

Posted 3/22/2010 10:49 PM (GMT 0)
Leslie,

I never wore any sort of band, but again that may be because I had lap surgery.

I don't know what happened to me, I know that over time your small intestine takes over for the large intestine and mine may be slow, although when tested it wasn't. I usually went 3-4 times after every meal for months and then things drastically slowed down. If you have a pouch, do you have to empty it? I wonder what you have? Do you go to the bathroom the normal way??

Anyway, yes at first I ate only a little at a time, but I ate several times a day. I lost about 12 pounds in the first 3 weeks, but over the past month have gained back about 5. I had that stomach virus this weekend and lost a few, but today I've finally gotten my appetite back.

I think you'll see that as time passes you'll be able to eat more at one time, and you'll get your strength back. I only work part time, but still stayed home for 3 months, I just didn't have the energy to go back, and also I was always on the toilet!

If you have any other questions, just ask!

Lori and Lizzie,

You've been on my mind so much lately. You've both been through so much and I honestly think about you so often. Lori, I know you've made your decision to use Dr, Wexler and go through with the surgery, but honestly I would call and talk to him. Lizzie and Rosemary are right; talking to him and finding out why he felt that letter was necessary may help you sleep at night. I know when you left his office you were scared, but I would definitely talk to him about how you felt when you received the letter. I would do that for peace of mind at least.

Love you all,

Janie
Posted 3/22/2010 11:01 PM (GMT 0)
Janie, Lizzie, and Rosemary,
I'm going to take your advice and call Dr. Wexner.  I'm afraid of what he might say, but I'm afraid anyhow.

Lizzie, can I ask you what process you had to do to be put on disability and how long it took?  It may be something that I have to do this summer and I was just wondering if you could give me any advice?

butterfly

Posted 3/23/2010 1:29 AM (GMT 0)
Lori,
I really think it's a good idea to give him a call. You can explain that you did leave his office frightened but receiving the letter was so unexpected that it just heightened your fears. I'd also ask if this was standard procedure for his surgeries. I know you're very scared, but you really need to have as much understanding of this as you can. Good luck:)
Posted 3/23/2010 5:37 AM (GMT 0)
Lori...I am so happy that you are going to call him. I know it is scary but only you know how you feel. By the way you talk on here, you really want/need this surgery and I wish you nothing but the best and I really hope that after you talk to him you will feel better. I am praying for you that you get some relief with the call.

Leslie...I am SO glad that you are doing well since the surgery. While I haven't had a colectomy or know of anyone that did, my neighbor just had major female work done almost 7 weeks ago and is still tired and having a hard time not being tired. She was cut like you as well. I think when you have a major surgery like that, it just takes everything from your body to heal. I am so glad that you are still happy you had it done.

Lizzie...I really hope you get to the rhumatologist and they make you feel better. I can't imagine how you feel right now. I am praying for you as well.

Janie...I am so sorry that you have not been feeling the best. I hope that as each hour passes you start feeling better. How was time with the grandbaby? I can't wait until all my kids are grown up and I can have the children over. Being a grandparent must be wonderful!

Rosemary...How terrible that something like that happened to you! I am so glad that you are fighting back. I HATE when doctors think they are Gods and do things without permission or without your understanding. I hope you get rewarded handsomely in the end and they loose their licenses.

Not much new going on here. Still waiting for information on the defecogram. rolleyes I still got no call back from last week so today I called and asked to make an appointment. She gave me one for next Monday and then asked what I was coming in for...this was the lady who took my number for the dr. to call back. When I told her no one called me back and am tired of living this way and I also told her that if he doesn't want to treat me I would find someone else she immediately changed my appointment till Wednesday. I can't keep doing this. Sometimes the Miralax isn't working now without taking Dulcolax on top of it. I definately feel now as though I have some type of an outlet issue whether the sigmoid is blocking stuff or if I have anismus or whatever its called. I am tired of having to sit half cocked to the side because it feels like there is a golfball in my rectum all the time. My hips are horrible now and after sitting for a while or sleeping I walk like an old lady until I work out the kinks. We went to a Celtic concert yesterday and I was miserable because it was hurting to sit. Not to mention if I am going to have surgery, I want it done before summer. I missed a lot of summer last year and don't want to do it again. KWIM? Thanks for listening to me ramble. Somebody has to right? tongue
Posted 3/23/2010 7:02 AM (GMT 0)
Lori after being son short-term disability and this running out I called the company that is in charge of my disability and spoke to the long-term lady in charge of my case. I had to answer many questions regarding my surger, what they did, what I could do etc and I was approved without hesitation. I hope you have no issues for this as you will need all the time in the world to heal....I love you sweetie and glad your calling. I think of you daily.

My day was horrible as I could not even hardly get inot the shower this am...called oc o for rheumatologist app and my pcp wants to see me first so I will go in wed. I could not open door this morning and right now its one of my emtying times and I had a horrible panic attach tonight trying to get to bed. I am also afraid of my mom leaving for a week...i know I am fine and have my husband, but I am alone so much and with not feeling "well" anyday yet I just worry what is going on inside this body of mine. I have heat applie to my hips right now and have taken much medicine ot get rhought the day. I hope you are all well and love you all...pcp dying....ahhh

Lizzie

Posted 3/23/2010 7:16 PM (GMT 0)
Lizzie, I'm confused.  Do you have disability insurance or are you on disability from the government?

butterfly

Posted 3/23/2010 11:53 PM (GMT 0)
Hi girls, will be having surgery #6 tomorrow. Will be getting the gall bladder taken out and see if it helps with the pain that I am having. I just cant take this pain anymore. I just hope that it helps.

Lizzie, feel so bad for you. Maybe you need to get a home health nurse in there to help you when your hubby is at work. I think it would help give you a peace of mind. It is so scary being by yourself.

Leslie, I have the same reaction when I eat fruit or veggies. I also do not eat beef or any kind of food with marinara in it like spagetti, lasagna, pizza, ya know all the good stuff. I just like to play it safe. I made the mistake once of eating pizza and was in so much pain for about a day. I do eat chicken and turkey and a lot of fruit loops!! My family makes fun of me how much cereal I eat, but it is something that I know will not make my belly angry.

If ya all could remember me in your prayers I would really appreciate it. No matter how much surgery I have and always get so nervous before each one. Good timing though cuz I am off work all week. Just what I want to do on Spring Break.

Will check in when I get home. Love you
Posted 3/24/2010 12:04 AM (GMT 0)
Marissa,   The gallbladder surgery is a breeze if done lap...instead of getting cut.  I had mine done in 93 was off one week and back to college the next, was kind of sore but that is about it.

Did the doc say that was the cause of your pain?  Did he do a ultrasound on it or anything? 

You will totally be in our prayers and I know you will do just great and ask the doc for dulodid,,,cant spell it but delodid,  well that will give you an idea of what I mean sorry my brain is not working to spell it right.  But its great for the pain..hugs and kisses to you missy...

God please keep Marissa safe and well during the surgery and help her to have a speedy recovery and to bring her back safely to us cuz we all love her...Amen.

LOL   Leslie....nono

Posted 3/24/2010 1:30 AM (GMT 0)
Lizzie,

Feel so bad for you. Get a home health aide. You sound like you should not be alone as you are not well enough.

Butterfly, Start the application for disability BEFORE your surgery. THere is a ton of paper work. Go to your local social security office and get the application. It's huge. Not to discourage you but start now.

Glad you are going to call Dr. Wexner. Remember ask for odds. You may be surprised he was just having a panic attack when he wrote it.

Let us know. Rosemary
Posted 3/24/2010 1:38 AM (GMT 0)
oh, yeah, I finished the suit interrogatory answers for the defense. Then they get them and try to catch me being off on one little date or somthing then say "see she lies." Meanwhile, my atty has sent The defense a set of questions to answer and he tries to catch them on something, though he has a full understanding of the whole drill and the Tribunal was very in MY favor. So, this may actually settle. Something I read on his web site said that Discovery (which we are now in can take up to 2 years.) Man, I sure hope I live to make stuff safer for all the patients these 2 docs may still maime for dollars. Not even needed surgery done wrong and no follow-up. Was all unneeded, done wrong, THEN no follow up to life threatening complications. IF and WHEN they're "day of reckoning comes, it should be a beauty!

MOST docs are at least honest in their intent and enough can go wrong with that. BUT these 2 as their past patterns of suits show, just do the same template on everyone who walks through the door. Nobody has 7 procedures that need doing. Jeeeze! bodies hold together better than that. Plus, the elderly lady who didn't need the bladder sling and they put one in AND did it wrong and she couldn't pee for a year. OH LORD! The list goes on. I don't see how the state med board lets them keep their license. I am on to something big here and hope I can bust this wide open. At one point before entering litigation, I actually contacted ABC and THEY were interested. So, there's always that, but I gotta do my thing first. Can't believe how long the process is, but my atty is right on this. I sure hope I did well on these questions, but I just told the truth and the chronology. Not much else I could do. Thanks for well wishes. My hope is to do something for the greater good beyond myself. Rosemary
Posted 3/24/2010 3:23 AM (GMT 0)
Thank you Leslie, that made me feel so much better. I have been fretting about this all day. My ultrasound did not show anything and I had a hyda a few months ago. The doctor just told me he is pretty sure that the gall bladder is the culprit. And I am having so much pain I just want it to be over. I was going to ask you through how your bms are. The doctor said I will most likely have diarreah. What is it for you.
Posted 3/24/2010 4:00 AM (GMT 0)
Marissa, I will tell you once my gallbladder was out eveything I ate went right through me..some do and some dont .  But I was that way for 5 years then eveything changed for me and I started to get ill and it took 10 years to figure out my colon did not work.

I was worried that I had not gone poo today and I was worried for nothing cuz it  happened.

So good luck gal and all the best and hit us back when your better.

Love Leslie

Posted 3/24/2010 4:30 AM (GMT 0)
Hi Tracy,

Am still resting from trip and getting over a cold and doing pictures, etc, but will call you some evening. What time is best?

You will get a hoot out of this. This is not to inspire because I can never be "put back" due to all my gut scarring, however, what is really interesting is that when I get the urge to poop mucous out of my defunctioned scarred in colon and rectum, I can now poop it out on my own. I do have to do this odd position. I put down lots of paper towels on the bathroom floor then I just do the squat position and out comes this pile of mucous. Yeah! No more mucous enemas and maybe even not need any more suctionings. How cool would that be? As long as the rest of me stays well, this will be one less issue to deal with.

There is no accounting for this as that 4 inches of scarred non-peristaltic colon is still in me and my rectum is scarred at a right angle (not just the nonrelaxing puborectalis), so who knows. But this was a nice little bonus. Just happened after 2 and a half years as an ileostomate. Poop couldn't do that, but at least the mucous can. Cool, huh?

I'm supposed to go for some thyroid fine needle aspiration of a thyroid nodule that is partly solid and not all liquid. BUT with my medical track record, I don't know if I dare. I'd go to a thyroid doc at Lahey who I'm sure would do it well, but I just don't know. I need a break from the medical world. Hope you are well as can be. When do you make your big decision on the ileo? Rosemary
Posted 3/24/2010 3:23 PM (GMT 0)
Rosemary, that would be awesome if I could just squat down and poop....shoot, we would even install a squat toilet!! LOL I am very bloated today. I sent Lizzie some pictures of my enormous belly a couple of weeks ago. She about freaked because it looks like I am 6 months pregnant. I just took a ton of miralax and am hoping I can have a good volume of a movement. That is my biggest issue....I can't poop enough at a time and my colon gets full of air and stool and swells. I did eat some fruity cheerios yesterday and today and am wondering if they contain extra fiber. Fiber is horrible for me and makes me so much worse. I have to eat no fiber if at all possible. Problem is, they have been adding this useless ingredient to EVERYTHING! UGH

I also have nodules on my thyroid. It never ends, does it?

I see my doctor on April 2nd and will ask him all of my questions. Call me anytime....Tracy
Posted 3/24/2010 3:54 PM (GMT 0)
Tracy,

Good to hear from you. Have you had to have any of your nodules fine needle aspirated? Docs in my part of state said they were all small fluid filled.

Thyroid doc at lahey said one has a solid component, but could still be benign but he could not promise me without fine needle aspiration. But the blood test said very likely benign. So am just trying to decide if I do it or not. He would do it correctly, I just don't dare chance it due to all my other issues. PLUS I got an A+ from my atty on my answers to the defense and the case is rolling. Not want to get in trouble from some side issue until this is all resolved. So I may just keep my nodules.

Though my colon worked fine, fiber was bad for me too. I did best on soft well cooked veggies and fruits and tons of water. Now I'm drinking water for another reason, but oh, well. I'll call you as soon as I get caught up on more business, taxes and such. Good luck April 2. Rosemary
Posted 3/24/2010 4:16 PM (GMT 0)
Well went to doctor today and he had no knowledge that I had even called rolleyes Anyway I have to have an anal manometry done as well as the defecography. Has anyone had the manometry done? Does the doctor do it? What is it like? Did anyone else feel like this is the most embarassing that they have ever had to go through? I feel like crying today. I know there are plenty of you who are far worse off than I am so please don't think that I am not sensitive to all of your problems. I just can't believe that it has all come down to this. Then I asked him if my colon problems could be causing me to have worse reflux. I didn't have reflux until I had my second child and it was so bad that I would wake up covered in vomit. So now he also wants me to have an endoscopy because I can feel a sore spot in my esophagus when I swallow certain foods or drink carbonation or when the acid is bad. I am only 32 years old and am afraid that with all the problems I keep mentioning that they are going to start thinking I am crazy or a hypochondriac. I am waiting now to get my tests scheduled. Thank you so much for listening to me. I just feel so lucky to have people to talk to that have been through the same sort of things. You guys are the best.
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