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TOTAL COLECTOMY PART 25

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Posted 8/21/2009 2:32 AM (GMT 0)
Hey everyone, I went to the doc today and he is pretty certain that I have Crohns disease. Which would explain everything. I have a ct on Tuesday to confirm this. He said that my colon was it such bad shape that something like that would not just happen. That there has to be some reason why it was so bad. I should not be having blood in my stool still from the surgery. It should all be healed by now. At least if it is Crohns I will have a diagnosis and be able to treat it with medication.

Yeah, Jen. I am so glad you got a date. Try not to fret too badly. I just had to have faith that everything would be fine. Your hubby will do great with the kids. Mine cant cook either, but the kids loved it cuz they had corndogs, mac and cheese, ramen noodles, all the stuff they love. I also had neighbors bringing in plenty of food. So accept any and all help that is offered to you. Because you will need it. You need to worry about you and that is it!! It is hard to do that as a mom but you need to take care of their mom. Trust me on that.

Love ya all, and talk to ya later!!

Marisa
Posted 8/21/2009 3:30 AM (GMT 0)
Marisa- Worried about you sweetie. I am so sorry you are having all of these continued issues. If the CT scan shows chohns....will medicine do the job, do they think? Is it in your rectum? I hope they can find out what is really going on sweetie. Love you and thinking of you.....

Lizzie

Posted 8/21/2009 11:42 AM (GMT 0)
Marisa, best wishes on the CT scan Tuesday. Whatever the results, I hope that you get some help soon so that yo start feeling better.

Jen, I am a lifetime Weight Watcher member, but I am currently 6 pounds over my goal weight. I am determined to get this off before my vacation.. and figure if I gain a few on the vacation, I'll still be alright and at goal after my bowel prep!

Lizzie, thanks for posting the update with Hodaya... I am worried about her, and reading it scares me more! I have such issues with vomiting and anesthesia, but thankfully - my last surgery they were able to control it with the addition of a patch behind my ear (Scopolamine) and Zofran. Don't know if any of those work with this type of surgery..?

Since I mentioned bowel prep.. what did you all have to do prior to surgery? I can't believe this will be my FOURTH (4) bowel prep within a 7 month period! uuggghhhh!
Posted 8/21/2009 2:50 PM (GMT 0)
Jenise that is great that you are just 6 pounds to your goal weight. I have several friends that are on weight watchers and they all seem to do well. Just keep it up and you can do it. Also nothing like a bowel prep to lose a few pounds too! Of course I hate bowel preps, it is killer when you have gastroparesis too. I just can't drink the massive amount of liquid they require without throwing up. I hate it!

I pray that Hodaya is doing better. It also scares me to think about her having problems, makes us think about the problems we could encounter and it is scary. I worry about her.

Jen
Posted 8/22/2009 3:20 AM (GMT 0)
Hey, From what I understood if I have Crohns it will be treatable with meds. And your suppossed to avoid stress. Ha!! How the heck do ya do that? Life is full of stress. Mabey however this will give me an excuse to cut my hours at work. I am so bad about saying yes to more hours even if I do not want them. Geez, I hate that. I am one of those people that cant say no. It drives my hubby crazy!!

Thankyou Lizzie and Jenise for your well wishes. I greatly appreciate it. You guys are so sweet. I only have one brother besides the one who was murdered but he doesnt communicate with me. So you all are like my sisters. I feel so close to you all even though we are miles apart.

Hodaya, hope you are doing well. We miss you.

Having a quiet weekend. My girls are at my moms to spend some time before school starts on Monday. But, I still have my five yr old boy. And he is hell on wheels. He starts kindergarten on Wednesday. My baby!! Wow I am getting so old!!

Marisa
Posted 8/22/2009 4:01 AM (GMT 0)

Marisa-so hope that everything is okay and that they can figure out what is going on.  If it's crohn's I pray that they can help you with the meds.  Enjoy each moment with your children, they grow up so quickly, one day they are in kindergarten and the next they are graduating.  It's had to believe how fast time goes but it truly does so hold them close when they let you, kiss them goodnight even when they are mad at you and always tell them that you love them, even when they are in their teens and in front of their friends, they might act embarrassed but deep down they cherish those words.

Jenise-I wish you the best with the diet; WW is great.  I'm a lifetime member.  I now go on and off mainly for my husband, he has always had weight issues but it's more psychological with him.  He's 6'5" and like 260 but in high school was 330.  He lost 100lbs after he graduated but still calls himself the "fat kid"; it's so sad because he's truly an amazing man and would do anything for me.  So I go with him but he won't stay for the meetings because after the first meeting he lost 14 lbs in one week & the women were like that's crazy & not fair blah, blah, blah and he's kind of quite and then they started talking about how their legs rub together when they wear shorts LOL well that's when he said no way was he going to stay for another meeting because his legs don't rub together and he doesn't need to know about womens legs rubbing together LOL so he weighs in & we leave:)

Also the prep, my surgeon had me do the best prep this time,  my surgery was on a Thurs night and on Mon I had to start with full liquids, Tues-clear liquids & 4 ducolax, Wed- clear liquids & one bottle of miralax mixed with 64 oz of any flavor gatorade; I also had to take 2000mg of erythromycin & 4000 mg of another antibiotic.  That's the part that killed me, I always vomit with erythro.  and I did several times, but the miralax was not bad at all.  I told him it wouldn't work but he said it didn't have to be all cleaned out because he was clamping me off anyway.  I truly think all of the antibiotics helped to not have any problems afterward; this guy is awesome and really knows his stuff.

 Jen & Jenise-Keep thinking postive thoughts, keep busy and focus on getting in the best shape you can before so you will heal quicker.

Lizzie-Please kep us posted on Hodaya.  Hope you are having a good day. Love you:)

Hugs

Judy

Posted 8/22/2009 2:01 PM (GMT 0)
Hello ladies. Well, my kids all tested positive for the swine flu, but all of them are recovering nicely. The tamiflu is a miracle drug and well worth the copay of $35.00 per person. Thank GOD!


Of course I didn't take any miralax the entire week with working and dealing with sick kids around the clock...so, now I am trying to get something going. UGH It is so awful to have to worry about pooping all the freaking time.

I need to catch up on ya'lls posts...How is Hodaya? I hope her ileus went away. I figured having the total colectomy would be a huge surgery. Hodaya, hang in there...you will get better...it just takes time.

about having chrohn's. I have a niece and nephew with this dreaded disease. Yes, they are in the same family and have the same mom and dad. I never heard of anyone having 2 kids with chrohn's. It is a nasty disease and hard to keep under control. Both kids take remicaid treatments every couple of weeks and this works ok. I know both of them, one is a boy and the other is a girl, suffer fistulas and this requires several surgeries every year. But, they are both young, still children and the earlier it is dx, the more complications they have from what my sil tells me.
Posted 8/23/2009 12:51 AM (GMT 0)
Tracy,

So glad to hear your kids are getting better; it's always so scary when they are so sick.  I don't know how much miralax you normally take but I used to take 4 capfuls a day so it's safe to take a lot to get things going.  And if you're really suffering, not that you want to do this, but the prep most drs do for surgery now is one bottle of miralax with 64 oz of any flavor gatorade.  This will probably keep you in the bathroom all night and you might not want to do that lol.  But just a thought if you're really suffering.  Hope you feel better soon.

Hodaya- Praying that the dr has found out what is wrong and you are beginning to feel better.  Love you.

Hope and pray everyone else is feeling well.  Might not have time to post tomorrow, have church, packing and am trying to find someone to watch my dogs while we go see our daughter; my other daughter's friend backed out and our normal dog sitters are in Vegas.  Hopefuly something will magically happen and things will work out, otherwise my husband says he will stay home:(

Hugs and love,

Judy

Posted 8/23/2009 2:21 AM (GMT 0)
Judy,

Hope you and hubby are able to go on vacation together; I know all about dog sitters, which is why when we lost our last little doxie a year and a half ago we didn't get another dog right away.  Now we're thinking about going to Vegas in October and I'm already worried about who will keep our pup!

I sure hope Hodaya is doing ok.  It's not like her not to write, but I remember I didn't feel like writing much either. Hopefully we'll hear more soon.  I'm so worried about her.

Tracy,

So glad your kids are better; you must have been so worried.  I'm in Florida and we're starting to see more cases now that school has started. 

Lizzie,

How are you?  Hope you're feeling better.  Seems like you take one step forward and 2 back sometimes.  I really hope and pray you can have another surgery and finally get your life back.  You deserve it, sweetie.

Jen,

Glad you got your surgery date.  It will be here before you know it!  My doctor also gave me antibiotics to take before surgery, and like Judy, I had no problems, thank goodness.  My surgery was 7 hours long (I had a very long colon)  and recovery was 8 days in hospital, but with no complications.  I had a NG tube for 5 days, though.  I have slow motility in my stomach as well, so my doctor knew I would have problems with nausea, so he warned me about the NG tube.  I didn't like it, but would rather have that than nausea, that's for sure.

Marisa,

I don't know alot about Crohn's but if you do have it, I hope the meds are able to help you.  Judy is right; enjoy your kids while they're young and try to not work so hard.  The kids grow up so fast--if you think you're old, my baby is 29!!  Don't ask me how that happened.  I can still remember the night he was born.  So you're not so old after all!!!

Take care everyone and have a great weekend.

Janie

 

Posted 8/23/2009 3:24 AM (GMT 0)
I havn't had time to post in the past few days. Could someone please update me on Hodaya? What happened? I am so worried about her.

Tracey, I am so sorry to hear about the kids. I will remember your entire family in prayer.

Christy
Posted 8/23/2009 1:39 PM (GMT 0)
Marissa
Did you have colonic inertia? I know you had surgery four weeks before me, we have talked about that. I am six weeks post-op and doing fabulous!! What were your symptoms of crohns? I always thought that was severe diarrhea. It would be crazy to go from severe cons. to severe dia. I hope you do well with the meds. and that they help you.

Someone let me know what happened to Hodaya. What is an ileus? Is that a leak?

Christy
Posted 8/23/2009 2:00 PM (GMT 0)
I think an ileus is when some of the intestines are asleep and not working and this makes the person very sick. The body can't digest even the bile it produces and this causes severe nausea and vomiting. I know a lady that posts here had an ileus for 3 or 4 weeks..but she is doing great now. Maybe she will come along and post about this. But, she is on a cruise right now, the lucky dog. LOL
Posted 8/23/2009 2:15 PM (GMT 0)
Tracey,
That may be why I had the NG tube so long. I couldn't eat for 14 days and ended up having the TPN through the pic line. Miserable nausea. But six weeks later, it was worth every minute of it!! I am like a new person, just weaker and tired. But that will get better everyday! How are your kids?

Christy
Posted 8/23/2009 7:02 PM (GMT 0)

Christy,

There is a post on the board from Lizzie that is titled "update on Hodaya" I don't know how to copy & paste and all that from the board or I would for you.  Her sister called Lizzie and said she is still vomiting bile and the drs haven't found out why. She was asking if any of us knew of any reason so that she could tell the drs.  She never mentioned and NG tube and most of us told her to ask about one.  Lizzie also talked about an ileus and that's where there might be a blockage somewhere or she might have possible abcesses.

We haven't heard anything since but have told Lizzie to keep us informed.  All of us have been very worried and continue to pray.

So glad to hear that you are doing better:)

Janie-We are all going on vacation together; our regular dog sitters are coming back from Vegas on Tues and can't wait to watch the dogs:) so my Mom will take care of them until then:)  Am busy getting things ready; so much to do and so little time.

Hope you are doing okay Marisa, have been praying for you. HUGS to yo!!!!

Love and hugs to all,

Judy

Posted 8/23/2009 10:00 PM (GMT 0)
Christy, I had my surgery due to chronic constipation. Once my doctor got in there and removed the colon he saw that it was in very bad shape. I have had blood in my stool ever since so he is thinking that I have Crohns disease. He said that would make sense since the colon was so terrible. It just doesnt get that way from chronic constipation. So my test is tuesday to confirm this diagnosis. I just hope it is an easier test that what I have already been through. I feel exhausted from medical tests!!!

So is Hodaya in the hospital still? I threw up bile for days. Never had a ng tube. It just gradually got better. And I started eating very very slowly. I hope she can get past all this yucky stuff and start healing. Hope to hear from you soon sweetie!!

Marisa
Posted 8/23/2009 10:11 PM (GMT 0)
Thanks Judy for the info. I had to have an NG tube for that reason during the emergency surgery because of a suspected leak. I wish they would have given it to me during the first surgery. It seems people have less trouble that way.

Hodaya - still praying for you and can't wait to hear from you!

Marissa - that is terrible. From one extreme to the other! praying for you too!
Posted 8/24/2009 11:50 AM (GMT 0)
Hi everyone.

Hodaya, hope you are on the road to recovery and that they have the vomiting under control. ((HUGS))

Marisa, how awful.... expecting relief and getting some other issue. Was your colectomy total or sub-total? I hope that the medications do control the disease and you soon will be feeling great.

Judy, I hope you have a wonderful vacation! Now that I have a little puppy (6 months old) I need to think about what to do with him when we go away. My parents watched him last time, but I think it was hard on them. Re the bowel prep.. I could do the MiraLax - I hated the Golytly drink so much!

Christy, 2 weeks with a NG tube.. does not sound fun! However, you sound sooooooo positive about your recovery now - thank goodness! All this talk, and lack of talk from Hodaya.. does scare me. shocked

Tracy, so glad the kids are doing better and you and your hubby didn't get it! Stay healthy! You're right about the ileus ... after surgery it can be a complication. I had it starting after my hyterectomy/colpopexy.. and it was not fun. My stomach was bloated to the point I looked 7 months pregnant, I couldn't eat and was nausea, but didn't vomit. My bowels were making no sound, but suddenly they woke up - making all sorts of sounds.

Lizzie, hope you're feeling better! Thinking of you too.

Janie, how is you little pup doing!?

My weekend was nice .. didn't do much but my stomach has been bothering me more. The Miralax doesn't seem to work as well as it did when I first started. sad asnd I am not sure if it is the Miralax - but I keep getting sharp pains in my gut! On top of this.. I am self diagnosing... but I do think my rectocele is also getting bigger. I try and try not to strain.. but it is the only way to have a BM. I am not sure if it is possibly - but the obstruction does seem worse then a month ago.. not sure if scar tissue could be an issue too from the other surgery. I go to the colon doctor this week, and my other doctor in a couple more weeks. I am ready to have surgery - but scared too.
Posted 8/24/2009 12:55 PM (GMT 0)

Hello all....

I was gone all weekend and have not had a chance to get s durther update on Hodaya from her sister. LAst I knew all of the xrays and all went good and looked good, they just thought it was taking time for her bowel to wake up as some of us have experienced. It took me 9 days to stop vomiting and they were unable to get an NG down me....but with my second surgery I had one for almost 17 days and It was such better relief. I will continue to update you when I hear anything. Hopefully I will get a chance to talk with her today.

Marisa- I wish you the best with your scan tomorrow. I will be praying for you and hope that with meds the crohns can be taken care of and stablilized. Thinking of you always.

Christy- SO glad you are doing so well...I agree that an NG sucks, but in the end it really does help. I will pray for your continued strength and wellness!!! SO happy for you.

Judy- Have a wonderful vacation and enjoy every moment of it...you deserve this sweetie:) Cannto wait to hear all about it when you get home.

Janie- Glas you are doing better it seems? How has everything been going? I am sure you have been so busy with the new lil pup. My life does seem to go forward and backward...tireing, but I am trying to do the best I can for now.

Tracy- Hope the kids are feeling better and you are able to focus on healing yourself again soon....praying for you always.

Jenise- I am so sorry you are not feeling well. I really can sympathize and self-diagnosing in our situations is pretty normal I believe. Miralax stopeed working for me and then everything di. I hope that you can get some relief before something worse happens. Obstructions can lead to so much and I pray you can get everything figured otu before you would have to endure anymore than you alreasy have. Thinking of you and praying for you.

My week just continued to get worse, but I feel "ok" today. I just did not feel right and the :back pain" I have had for months. Well, my back went out at work. I had to leave have someone drive me to a chiropractor. They took xrays and my lower spine is curved, my lft hop was two inces above my right and I had so much tension he could not believe I had been walking aroud like this and going to work. I had to go twice fri and I go back today. I am not sure if it was from the adjustment, the new muscles relaxers or what ( also I think you were all right...coming off the celexa has done a number on me). We were up north with my family all weekend and I threw up until last night from Sat am everytime I ate. I finally kept some cheerios (dry) and saltines now last night and had a special K bar this am. Thankfully, I did not lose or gain and was able to keep my fluids regulated. I woke up this morning to stool all over my bed...my bag leaked again....I have been changing them everyday now and have just accepted it. GOOD NEWS: I had three normal BM's since Sat AM! I was hoping this would happen and reasuure me the surgery IS coming!!! I spoke with my surgeon and he said he thinks I am doing wonderful trying to remain positive and to just be strong. I know I may not show it a lot on hear, but my realy fears come out on here. Thanks for all your continued prayres and belief in me. Love you guys.

Lizzie

Posted 8/25/2009 3:44 PM (GMT 0)

Hi Everyone,

We made it safely, to our daughter's; we didn't arrive till 1 in the morning so I didn't get to see my baby girl till this morning; I jumped into bed with her and woke her up:) just couldn't wait to see her!!!  I normally sleep on car trips, even when we go to the drs, I sleep most of the way there, but this time I stayed awake the whole time cause I couln't wait to get here and it took us 12 hours; I just miss her now that she's not home with us. And all four of us are together as a family for the first time in couple of years because of our other daughter's college schedule and my surgeries we couldn't vacation together, so looking forward to a GREAT week smilewinkgrin tongue yeah !!

Marisa-Hope and pray that things went well.  You can get through this and your dr will help you with what comes next if you have crohn's; you're strong and a survivor; always know we are here for you.

Jenise-I hope that things get moving for you soon and that you feel better.  Surgery is not far away and this will be all behind you:)

Lizzie- You poor thing... I Hope the chiro. helps;you need a break from all of this.  It's your turn to feel better.  It's going to happen; especially now that you are having those normal bms, YAY!!!!!! i used to go to one twice a week when I was so sick and I loved my chiro. but then he got married and moved away and I haven't found a good one since; but if you have a good one, they can really help you.  Always in my prayers.

Tracy, Christy & Amanda too- Hope this finds you well and that you are enjoying your health.

Love you all,

Judy

Posted 8/25/2009 10:23 PM (GMT 0)
Thank you Judy, you are so sweet. I am so happy that your with your family. I guess you do not realize how precious your children are until they are all grown up and moved away. I looked at my fifth grader yesterday on their first day of school and thought to myself that she is growing up way too fast. We went to the park the other day and I had "the talk" with her. She was so funny. She was like, "Mom that is so gross!" I loved it!

My scan went well today. But, I had to drink three of those gross bottles of barium. So I have been so flippin naseated today. Oh well, we have all been through worst.

Any word on Hodaya? I hope she is doing well. And Christy hasnt written in awhile. I hope she is recovering well also.

Lizzie, you really are an inspiration to me. Whenever I think I am having a bad day I just think of all the crap you have to put up with. Literally!! I really hope you can get that reversal soon and you get better.

Love you all, Marisa
Posted 8/26/2009 1:24 AM (GMT 0)
Judy,

I hope you have a wonderful time with your family this week!  I'm so glad you're feeling well and life is good!! 

Janie

Posted 8/26/2009 3:01 AM (GMT 0)

Thanks Janie,

It's so good to be altogether:) Have a great time with your puppy; I miss my babies already.  I hope and pray you are feeling well; have a good week!

Love & Hugs,

Judy

Posted 8/27/2009 1:36 PM (GMT 0)

Hello All....

Board has been quiet so I hope that means all is well with everyone. I have not spoken to Hodaya's sister, but I have her number in CA and could try and got a hold of her. I have not been feeling too well so I have not been on my fb to see if she has been on. I am worried for her...i believe it has been 10 days today.

Well I have finally stopped puking, 4 days with every meal was really annoying. My back is still out, my manager thinks she may be sending me home from work today, but I am trying to push though. I took my muscle relaxer, but the edge is not going away. I have been to the chiropractor for almost 6 visits and nothing is better for more than 12 hours.  My biofeedback is doing well.....she believes 2 mo would be enough so that puts me at second week of October. I will make a visit with surgeon about a week before I am done to see what he is thinking. I have gained a couple more pounds, not to happy about it, but I guess its for the good. I range between 105-107 and I am 5'1 1/2....so its good.

Hope everyone else is doing well, enjoying thir families and vacation, healing, etc. Miss talking with you all.

Lizzie

Posted 8/27/2009 10:39 PM (GMT 0)

Hi All,

Lizzie-Hope you can get ahold of Hodaya's sister and hear how she is doing; it's been such a long time to not hear anything from her.  I pray that she is starting to feel better.  So sorry that you still are not feeling well.  It's super that the bum is WORKING:)  October isn't too far away, and then you can get your reversal; YAY!!!!!!!!!!!!!

Marisa-Hope your scan went well and that you are feeling better.  Let us know what they have determined.

Jenise-Are you feeling any relief yet? Soon things will be better; just concentrate on getting everything done that you can so that you won't worry so much before your surgery.

Hodaya-Love and miss you :-)

Janie, Jen, Tracy, Christy-Hope & pray that you are feeling well.

Enjoying the sunshine & time with my hubby & girls; just relaxing & doing whatever we decide at the spur of the moment, NO schedules which will start soon enough. Miss my dogs and cat but they are being well taken care of. Talk with all of you soon.

Hugs and much love,

Judy

Posted 8/27/2009 10:56 PM (GMT 0)
hey all sorry for not checking in for so long, even though i have internet in the hosp. i read very briiefly some of your posts, but posting myself is too tiring, cuz the computer is hung on the wall and the keyboard is on the screen, so i have to lift my hand real high in order to type and that was too much for me. thank you all SO much for your love, care, support and prayers!!! they mean the world to me and made me feel so much better inside to know you all care so much, i love you for your love!!! i'm still in the hosp, just lasted a bit longer than i wished it would. it's hard to type here, so i can't tell you the whole story right now, but i promise i will as soon as i get home. love you and miss you all!
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