I just read your post sweetie!! I am so glad they have the best of the best working on your case. BUt like someone else said...at least you know you did EVERYTHING before making a drastic decision. I envy your courage and patience with this whole ordeal...
DId they say at all why you may have developed the anismus? What is it from? Does it just develop over time?
I wish I was closer...I'd give you a big hug around that tiny 113 lb body of yours!!! I hope you can at least start drinking some carnation instant breakfast to get some nutrients in you...you are going to need all the strength you can get for these next few weeks/months.
LOVE YOU SO MUCH!!!!
Just another update.
Dr. Chey's office called just before five tonight and gave me the first recommendation. I am a bit frustrated to say the least, but am willing to do whatever.
They want me to set up daily biofeedback at home with my physical therapist to do daily??????? and try this for two months and if I do not have any improvement to call back for further recommendation. First of all...I am going to vent. I did biofeedback therapy weekly for 75 min every Wednesday for nearly three months and had "little to no improvement". We tried the machine, baloon therapy, and manual therapy with at home stretches and exercises. I did everythign I was supposed to do. Now, I am supposed to do more of this crap and continue to feel like crap for at least another two months!!!!
Then I got to thinking when I got off the phone with the lady from his office. I should make an appointment now for it took 13 weeks to get in the first time. I called right back and the lady said quote" your lucky, I just cancelled the only June appt he has left. His next avbailable would have been in the end of AUGUST!!!! If I would have waited till the beginning of June I would have not gotten in till probably NOVEMBER. So I took the June 8 appt.....becuase I am not trying to be negative, but I do not think this is going to work...why would it now. I AM SOOOOOOO INCREDIBLY FRUSTRATED!!!!!!!
I need your opinions on this. Have any of you had success with biofeedback therapy?
That's ridiculous Liz! It's a good thing you called right back...for the doc to know the kind of situation you are in...you'd think he would have told you HIMSELF to schedule out...
I guess you are at the mercy of what he thinks should be done. If you STRONGLY feel this is a waste of time, call and request to speak with him or leave a message and ask what would be the next step after this? Is this the LAST thing before surgery?
I'm so sorry you have to wait. I tried biofeedback for a couple months (weekly) but reallly saw no improvement. If you can't get in to see the Dr. until June, you may as well try again though. Maybe, just maybe, it will work. I pray it will!
Linda and Kristin,
I had laparoscopic with hand assisted total colectomy 2 weeks ago today. I was in the hospital for 8 nights, mostly because I had the NG tube for 5 days and catheter for 6. I won't lie, it wasn't fun, but when you can't have bm's for weeks at a time, that's certainly no fun either. I came home last Thursday and have had about 15-20 bms a day since. It sounds like a lot, but there is very little each time, and I always have plenty of time to get to the bathroom. In the hospital, on day 6 I had liquids for the first time, and I got the runs like you wouldn't believe....I couldn't even tell when I was going to go. I was wearing depends and going through them like crazy...but only for 24 hours. I started solid food (normal diet, first meal was spaghetti and meat sauce!) and then I started going about 5-6 times after each meal, but I have complete control. My doctor told me to eat a normal diet and if something didn't agree with me, to wait and try again a few weeks later. So far ice cream is the only thing that seems to not be a good idea!
I'm 53 years old, so I would think it would take me a little longer to bounce back, but I've already been to the mall, to the grocery store, to my mom's for dinner and I walk every day. I haven't stayed in bed since I got home. I try to get alot of rest, and I still can't drive (I go to the surgeon tomorrow so hopefully I'll be able to after he sees me) but I'm also up and around all day. I've only taken 4 pain pills since last Thursday when I came home, and that's been at bed time.
I have no idea what the future holds for me, but I lived on senokot for 30 years and finally enough was enough. I was scared to death to have the surgery, but now I'm so relieved it's over. I'm still very tired, but my kids are grown, so I don't have any little ones to take care of.
My doctor said my colon was 8 feet long....5-6 feet is normal, so I feel totally justified in taking such drastic steps. He said that extra 2-3 feet was probably a huge part of my problem.
If you have any other questions, just let me know. I'm still learning about what to expect, but I can tell you that I am so much more comfortable now than I was 2 weeks ago, pain and all. I don't think anyone who hasn't walked in our shoes has a clue what it's like not to be able to poop! .
Welcome Kristin and Linda!!!
First off Lindsay...I miss you and need you SOOO bad :) We need to set up a time to chat. According to him this is the LAST before more surgery.
Ok, anyways, to try and answer some of your questions.
This is based on my experience, which was not mormal, but can still help.
I was in the hospital 9 days the first time after my TC. I am not going to lie, I have never felt so bad and felt like I had been hit by a truck. I work up with a pain pump going....I was on this for three days. Its very important to WALK....even the next day after surgery. You do not want to develop a post-op ileus as I did and which is what cause my 9 days and 3 NG tubes. So....WALK! WALK WALK! and set a goal each day for how many laps or whatever you want to do. Bring bigger than normal comfy clothes and studd easy for the IV to get at. You may have some incontinence when your bowel wakes up and the hospital usually just has massive pads, but you can bring your own. Bring an ipod or laptop. You can expect to be there at least 4 days minimum and that is low. You will not be able to lift over 10 lbs for 6 weeks after surgery. I was on a low residue diet after D/C for 4 months, but then again I had complications. Most can resume normal eating after you hit the reg diet in hospital. You will start out NPO until you have bowel sounds, then soft, the, reg and it all depends on how you handle it.
Most are back to work in 8 weeks, i was out for 4 months nearly. You will not feel normal for almost three months at least. You will have way less energy and little things will tire you out. I had some post-surgery blues.....this lasted about 3 months for m,e but then again I had complications. Once you start feeling better you can resume all normal activities. I was able to workout and do situps with no problem at all as soon as my complications cleared and I had energy.
In my little honeymoon of feeling well...I felt the best I ever had in 8 years. I was working out and eating whatever. I do not regret having this surgery for one minute EVER!!! Do not look at me and think its going to happen to you. I am that 5 %......you girls will be fine and you will get you lives back. You will start out with watery stools about 15 times a day esp after eating, but not in large amounts and the more food you eat esp with fiber they will slow down. The avg without a colon per my surgeon is 3-5 bm's a day and I do believe they become of normal consistency. You will go home on some type of pain meds, but you will not need them for long. I went back to work with a belly binder. I am a nurse and on my feet and needed the stability. Hmmmm.....what else. Bring lots of underwear just in case, treaded socks for walking or slippers, a robe if you like them, your own pillow and blanket, own toilet paper, stuff to read, phone charger, spme of your own foods, hard candies or mints, shampoo.conditioner, razor, etc Hope some of this helps. I wish you guys the best.
Hey guys....Just checking in today. I am still so incredibly srudtrated. I have tried to get a hold of my PT for biofeedback and see how her and Dr. Chey's conversation went, but she has been with patients and so have I so far today.
Lauren- Geez, you sound just like me. So let me get it straight...you still have your colon I am assuming? Why do they think a second round of biofeedback will help for you and how long are they making you do this? I am in your same boat....I need answers. Its drving me crazy. I am hoping I can start biofeedback within the week and then return to U of M June 8. It still seems so far away.
Hodaya- I feel your pain on the waiting. I believe its the hardest part of all of this. I feel so bad that you have to continue to be in pain. How is your mom doing this week? I hope you can find some peace in all of this sooner than later. I am too sad that he does not think the nerve stimulation would be that good of an option. He said that it is usually used for incontinence and he has never seen it used with anismus or pelvic outlet obstruction.
Amanda- Hope they can figure you out...sounds like your aving a defecography. Hope all is well.....and that your business is taking off. Miss you on here. Hope the cream helps that poor bum of yours!!!!
have a good day everyone.
Janie, I am feeling so happy to hear how well you are doing! Thanks for the detailed updates, it really helps with my nerves. I can't believe how much lg intestine you had in there! Whoa! I hope I end up with only the laparascopy too. It must make recovery easier since there isn't the larger incision.
So I spoke with my PT this afternoon. She said that Dr. Chey does not want to think surgical right now and even though she was adament that the biofeedback did not budge anything the first time and I did it weekly for 75 min sessions and tried the stimulator, manual therapy, and baloon therapy. he asked her if there was anyting else she thought left foe me to try and the only thing she told him was about the at home biofeedback machine. It is like what you do in the office with the rectal probe, but small and you cannot see the wave lengths. She said I can do this daily and I should know within a month if its not going to be beneficial He is having me try for two months, which I will do, but am just so discouraged. I mean....why would it work the second time?
She is going to get a hold of me next week to set this up to start. Hodaya- Yes, it was Dr. Dujovny's idea and he had consulted with a colleague of his within their practice. Their is information on it working for constipation, but it does seems that all of the studies that involved those who had both pelvic outlet obstructive disorder and colonic inertia did not have successful results with it. All in all....I would try it, but I guess it would be up to their recommendation. Seriously, I am so reasy to just have surgery. I have been researching in detail the BCIR which is a continent ostomy without a bag and you use a catheter to emty and the stoma if flush with the skin, etc. I have been in contact with a hospital in FL and they perfoem it at Cleveland Clinic. They believe I am a candidate for this surgery....it is major much like the TC with a longer 8-14 day hospital stay, but if I have to have an ostomy it is omething I am serisouly lookig into. I am so sick of living like this....waiting.....feeling crappy....etc. I will make them happy and to the biofeedback and maybe with a miracle it will work, but I am not holding my breath.
Anyways....Janie...glad to hear you are doing so well. I have hear the Lomotil is good. I hope this works out for you and you can still feel empty.
Hodaya....So happy about you mom! That is awesome!!!! Prayers have worked. Hope your hangin in there...