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TOTAL COLECTOMY PART 31

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Posted 1/25/2010 8:14 PM (GMT 0)
Lizzie, still praying for you. I keep checking the computer for an update. I can't wait to hear that you are out of surgery and doing well and that your surgery went great!


Hugs!

Kristen
Posted 1/26/2010 12:16 AM (GMT 0)
Lizzie, I've been praying for you and thinking about you all day today.  You are so important to all of us and I am so concerned about you.  I'm glad that you're at Cleveland Clinic.  They're the best and you deserve it.  Can't wait to hear from you.  Miss you so much!

butterfly

Posted 1/26/2010 12:49 AM (GMT 0)
Went to the Bellestes Islands today in little boats.  Sort of mini gallopogos islands.  Saw sea lions, booby birds, and pelicans up close and personal.

Am sure praying for Lizzie; whatever they do HAS to work for her.  Rosemary

Posted 1/26/2010 3:39 AM (GMT 0)
it's Teusday morning over here, i suppose Lizzie should be post op by now.... so worried and concerned about you Liz, thinking of you lots and anxious to hear something soon.
Posted 1/26/2010 9:49 AM (GMT 0)
Lizzie,

I pray that you are in the recuperating phase of your surgery and that each day brings less pain and finally recovery for you and your family. I will continue to pray for you!

Kristen
Posted 1/26/2010 10:02 AM (GMT 0)
Gilda,

You offered some help with vitamins and minerals. I know my body is not getting what it needs and hasn't for quite some time. What would you recommend vitamin supplements and/or certain foods? I am still trying to stay on the softer side of foods until I feel my body can tolerate more solid foods. Mostly, I hesitate because of the rectal pain in the mornings that I experience when my stools are somewhat formed. Also, you mentioned that sitting in a tub of water might help with the pain. Do you or anyone else know how many weeks post-op do I have to be to sit in a bathtub?I do not want to get an infection in my incision. My incision was glued together beginning and inch above my belly button all the way to my pelvic bone. (Actually, I thought it would go all the way up to my breast bone, so this was a pleasant surprise!) On top of the glue I have some areas that still have the butterfly tape attached, but some has also fallen off. The Dr. told me that these would fall of on there own.

Thank you for the list of foods to help with the but burn. How are you doing since your colectomy in April 2009?

Thanks again for all of your help!

Kristen
Posted 1/26/2010 10:18 AM (GMT 0)
Hoyada,

You wondered why you were unable to take a step forward, for example; by taking the Miralax. I can share what happens with me sometimes. Sometimes I become so overwhelmed and frightened about a situation like this that I want to escape from it and not think about it or deal with it. Mentally, my brain needs to just "shut-down" for awhile a not completely allow all of these problems to overtake everything in my life. So, I give myself some "mental health days" basically, giving myself permission to not think about this at all for awhile. This is very difficult because we have bodily function needs that can't be ignored. If I back the pressure of myself for a few days, I have found I am much stronger to confront it again and take baby steps forward. During this time, I also pray a lot. I don't mean to say that I usually don't pray, but this is different it is time for me to relax my mind and focus on God. Does any of this sound familiar to you? I hope this helps you to know that you are not the only one who goes through this.

Thank you for the list of foods to avoid. I will be sure not to eat these because I fear a blockage!

If you are able to look at yourself for a few minutes from an outside point of view how are you doing physically and emotionally? Can you take a few days for yourself to just shut down? This probably isn't possible for some of us, but I can tell you that it makes a big difference to me.

Thanks again for all your help and I will be praying for you!

Kristen
Posted 1/26/2010 10:28 AM (GMT 0)
Janie,

Thank you for asking about my pain. Yesterday, has been the first day since I have been home from the hospital that I haven't experienced this pain. I don't know if that is because all of my stools were more liquid and not formed? It is 4:21 a.m. and I can not sleep. I got up to go to the bathroom and sure enough formed stool and extreme pain. I did take a dilaudid and flexiril and I am awaiting for the relief to begin. I am trying to see if there is a food connection. So far, I am not able to connect anything. The pain is not from the bm in such away as the breakdown of raw skin like butt burn, but internally in my rectum. I do think that Tracy might be onto something and that these could be rectal spasms. I experience bladder spasms from Interstitial cystitis so maybe this is it. I sure hope this goes away with time and will not require another surgery.

Hopefully, on Feb. 18th when you see the new GI doc. that he/she will be able to help you.

I will be praying for you!

Kristen
Posted 1/26/2010 10:33 AM (GMT 0)
Jenise, I can't remember if you ever took the prescription drug called Amitiza. I found that this drug did help, but the side effects were to severe for me to stay on it. But, with everyone being different maybe it is something you could ask your doctor about and it may help you.

I will make appt. with my surgeon soon if this rectal pain continues. I really don't want to call my surgeon, but with everyone's input on here I know that I should and that this pain is not normal.

I will be praying for you!

Kristen
Posted 1/26/2010 10:50 AM (GMT 0)
Lori,

Thanks so much for the Calmoseptine recommendation. It has helped sooo much! It is like night and day since I started using it!

May I ask what your prep. instructions are for your upcoming Fistulagram on Feb. 1, 2010? Will this test show all fistulas you might have regardless of location? After I had a recto-vaginal fistula (only diagnosed by Gyne. doc. who could see the bm (diarrhea) in the vagina) he gave me two antibiotics and then reexamined the vagina and did not see any more bm. I told him that it had stopped a few days prior to this follow up appointment, but he wanted me to have a CAT scan to make sure. I had the CAT scan and nothing showed up. After reading here I am wondering if I needed a different test instead of a CAT scan, perhaps what you are going to have done. I'm afraid mine may still be an issue and maybe that is were the rectum pain is coming from. What do you think?

I will be praying for you along with everyone on here!

Kristen
Posted 1/26/2010 10:52 AM (GMT 0)
Marisa,

How are you doing overall since your colectomy on June 1, 2009? Are you experiencing any problems with constipation or do you have to take any meds./laxatives to be able to have a bm?

Kristen
Posted 1/26/2010 10:57 AM (GMT 0)
Rosemaary,

Your trip sounds so fabulous! Please don't overdue and get dehydrated like you mentioned. I am praying for you to stay health throughout this cruise (and beyond, of course).

As I told Lori above, I think that maybe my pain could be from an unresolved fistula. Do you know if a CAT scan would show this? Maybe, I should of had another test instead.

I wish you safe and healthy travels. When do you come home?

Talk to you soon.

Kristen
Posted 1/26/2010 11:01 AM (GMT 0)
Tracy,

I think you could be right on the rectal spasms. At least I hope this is what the pain is from and in time it will disappear. I do have bladder spasms that affect my interstitial cystitis when I have surgery, IV fluids (do to not being able to hold very much urine in bladder) or because of a catheter.

When is your rectal testing going to be done? How are you feeling.

Thanks for helping me figure this out!

Kristen
Posted 1/26/2010 11:03 AM (GMT 0)
Well, my posting marathon is now over! I posted individually because I was afraid if I put it in one long post it would disappear. I will be praying for all of you as always. I am very thankful that I have found all of you my friends!

Kristen
Posted 1/26/2010 1:50 PM (GMT 0)
WOW.. good morning Kristen! I too was up early this morning and couldn't sleep! Came on here to see if there was any news from Lizzie.. and there wasn't! Kristen, I was never given medication ever... I can't tell you how many times I "tried" to talk to doctors about my constipation.. but all they ever told me was to eat salads and more fiber!! Grrrrrrrrr that never helped!

You know.. I feel pressure (but not pain) when I have stool in my rectum. My stools are not formed, but still soft - because of the MiraLax. I just can't find a happy medium.. if I reduce the MiraLax, I stop going which just scares me.. so I take MOM or more MiraLax!! I already went when I first woke up this AM - but not a lot.. and now I have this pressure, which I know I have to go, but can't yet... but my body just takes a while so I have to keep trying and then, it will suddenly come and pressure goes away. Maybe your pain is from your stools being too formed? They aren't hard are they? Did they remove your colon because of CI or because it was twisted?

Lizzie, can't wait till you or hubby can check in with us!! Sending prayers your way!

Rosemary - trip sounds AWESOME! Keep having fun.. when will you be home?
Posted 1/26/2010 3:54 PM (GMT 0)
Kristen, I'm not sure what they'll be doing for my fistulagram.  I know that I had 3 fistulas with drains after my emergency surgery in June.  For this test, I have to check into patient registration at the hospital at 6am and will begin testing at 8am.  I cannot have anything to eat or drink after midnight the day before.

 

butterfly

Posted 1/26/2010 5:17 PM (GMT 0)
Janie, my dear friend, don't worry, i won't go to an ileostomy surgery w/o trying the miralax first. for now, i keep my soft-liquid maybe 80% of the time, and when i eat no no's i get miserable, i then take lots of prune juice, it doesn't help much as it used to a few weeks ago, but enough so i don't feel too bad. also i will get my supplements within 8 days and start taking them and hope it helps. so as long as i keep my diet, i'm o.k. if i reach to a point im too miserable, i'll take miralax and i'll take it as long as it helps. IF i reach to a point that NOTHING else helps, like it happened to Lori, THEN AND ONLY THEN will i start considering an ileostomy. Kristen, oh honey, thanks for your care and trying to help me figure out my complicated self. you got it in many ways... yes, i feel like running away from everything.... i'm just so sick of dealing with this and feel like i want out of this game - life.... but i'm strong and i'm coping. i'm doing my best to keep functioning like every other normal person, like work and all the rest chores there are in daily life. but socially i'm not involved at all, i just don't feel like seeing anyone, cuz i'm always feeling lousy and tired and after work and all the other obligations all i want to do is go home cuz i'm too tired. i wake up at 330 am in order to finish with bms before heading to work at 645 am.... but i'm not managing to have enough out anyhow. i'm exhausted of this life. sometimes G-D puts us through trials. all we can do is cope with what we've got, right? what other choice is there? anyway we're all coping as best as we can and hoping some day things will be better. for all of us. Lizzie....... so worried.. hope everything goes well.
Posted 1/26/2010 5:38 PM (GMT 0)
Oh Hodaya, that is just awful. Getting up at 3:30..... YUK 3:30 is still like nighttime to me. But, hey, we have to do what we have to do.

Kristen, it took, I think, 4 weeks for the rectal pain to go away...it could of been longer, but not more than 2 months I don't think. It was horrible though. Worse than all my stitches that I had...I went to my doctor desperate and furious for pain management! He thought I was nuts. I was insane and acted like it. I accused him of making my bowel problems worse and I demanded him to "fix me right now and make this pain go away". See, my ability to push a bm out after this sugery only intensified and my rectum was in spasms and I couldn't get the stool out my normal way...manual removal due to the rectal pain. He forgave me at my next appt. 2 weeks after that after I had calmed down. LOL He said pain makes people irrational. HEEHEE I can't even believe I was that person.

I had those tests today. All went well. Nothing too painful, just uncomfortable. She wouldn't tell me anything, but for some reason said the pudendal nerve is working correctly and so NO NERVE DAMAGE! That is great to hear. So, I should be hearing from my doctor in the next week so he can give me my test results. She also said, Dr. Singh is a terrific doctor, that she would go see him if she ever needs a colorectal doctor, that people travel all over to see him. So, very glad I went with Dr. Singh and not those other 2 docs. So, that makes me feel so much better with my decision to NOT have the total colectomy and see if this pelvic floor dysfunction can be "fixed" or not, leaving me with am ileostomy.

Lizzie, I hope you are recovering well. I can't wait to see how the BCIR goes for you. I think you will be the 1st with this internal pouch. Sending prayers your way.

Tracy
Posted 1/26/2010 6:08 PM (GMT 0)
no nerve damage!! that's truly great to hear Tracy!! i'm glad you found this dr, sounds like he'll do his best to help you and that's wonderful! i hope he comes up with the best plan for you. and yep, my schedule is crazy... LOL i'm used to it :/
Posted 1/26/2010 10:02 PM (GMT 0)
Hoyada,

You're absolutely correct that all we can do is cope with what we have! I can relate about not being involved socially. I have been this way for almost two years. Sometimes when friends and/or family calls I don't answer the phone. I felt like I never had anything to say that was positive and I didn't want to bring them down all the time. It is so hard for other people to understand what we go through and difficult to even try and explain it to them. They ask, but then you can see in their facial expressions, oh way to much information. I am fortunate and do have wonderful friends and family support. It's just me shutting people out. Except, on here I feel like everyone understands and is so friendly and helpful!

Again, I am so thankful I have found this site and have all of you!

Kristen
Posted 1/26/2010 10:18 PM (GMT 0)
Jenise,

I was told to eat more fiber for years just like you. I kept telling the doctors that I more fiber I ate the worse my problem got, because it bulked up the waste and I couldn't get it to move to my rectum to expel.

Maybe, you could ask your Dr. about Amitiza if you want to. This is the brand name and there is not a generic. This prescription is pretty expensive unless you have good prescription coverage. I was taking 24 mcg morning and at bed. It also comes in 7mcg, for those that do not need as much of the medicine. It came on the market after Zelnorm was taken off. Basically, it draws more fluid into your intestine. I wish I could have continued this medicine because I did have improvements, but the side effects were to bad for me. They might not be for you though.

No, my stools aren't hard sometimes there just formed and this seems to be when the pain is worse. Although, this morning I did not have formed stools and I still had internal rectal pain for a few seconds.

To answer your question about why they removed my colon, first my lower part of my colon was tight and fixed and shaped like a W instead of just going straight down to the rectum. After finding this out my surgeon was only going to remove that portion of the colon. He wanted me to have the sitz markers test done before any surgery. The test results from this showed CI and that's when he told me that I would not be happy with only having part of the colon removed because I would still have problems having a bm due to CI.

I wish you didn't have to take MOM each day along with Miralax. Miralax made me look like I was 7 months pregnant and MOM always made me gag and sometimes even vomit.

I hope you can find a happy medium or at least research Amitiza and see if you would be interested in it if your Dr. thought it was appropriate to your condition.

Kristen
Posted 1/26/2010 10:21 PM (GMT 0)
Butterfly,

Can you tell me what your symptoms of the fistula's were?

Thanks
Kristen
Posted 1/26/2010 10:26 PM (GMT 0)
Tracy,

Thanks for the info. on the rectal pain! I am so happy for you that you do not have any nerve damage! Dr. Singh sounds like a great doctor and one that is completely thorough. I would have liked to have further testing before my TC too but, because my insurance was running out I felt like I had no choice. Now, I am glad that I went ahead with surgery because I am so much better, but I am worried about the rectal pain.

I hope your doctor only has good news for you when you see him and he can help you quickly!

Kristen!
Posted 1/26/2010 10:27 PM (GMT 0)
Hodaya,
I'm really not trying to tell you what to do, but I just wonder if, like me, miralax would allow you to eat most foods again. Living on a soft diet can't be fun, and I just love to eat too much to be that restricted.

There are still things that block me up, but I just don't eat alot of them....I can now eat thin crust pizza, (1 or 2 pieces)--before, couldn't eat it at all. I basically eat just about everything, but I am careful about the amounts of cookies, cakes, donuts, etc. that I eat. I know you don't want to start any laxatives, but if these pills you are getting next week don't help after a couple of weeks, give miralax a try. It's amazing how it helps me. I truly couldn't go hardly at all without it. If I eat too much sugar, I still have to do an enema, but I'm trying really hard to stay away from so much of that.
I can eat rice, potatoes and noodles now, which I couldn't before. I hope you start feeling better one way or another soon. I was truly feeling just like you when I was drinking the prune juice every night; seems like I couldn't leave the house and I was always miserable with the rectal pressure. I don't want you to live that way!

Kristin,

If you can get the rectal pain resolved, will that make a big difference in how you feel? Rectal pain is terrible, I know.

Hope we hear from lizzie or her family soon.......

Post Edited (Janiepain) : 1/26/2010 4:46:23 PM (GMT-7)

Posted 1/26/2010 10:27 PM (GMT 0)
I am terribly worried about Lizzie!!!!!!

Kristen
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