TOTAL COLECTOMY PART 28

Hodaya, I am so like you in that I really have to strain to get any poo out. And even at that I am getting very little out. I go about five times a day. I have really just accepted this is how life will be for now on. But I dont want to be causing anymore damage with the straining!! I go to the doctor on the 1st of December so I guess I will see what he has to say about it. I will also be having a scope procedure to look at whats left of the colon and small bowel. At least they will knock my bootie out for that!! I have had way too many test done to my pooper when I am awake!!

Welcome Stacy to our family! You can talk you us about anything. Why will your surgeon opt. for the subtotal over the total? I was told the total was the best because with the subtotal there is often the need for more surgery in the future. I would definetly discuss that with your surgeon.

I dont know about you guys, but I feel like I have lost many of my friends through this illness. It may just be me, I dont know. Its like everyone is tired of hearing about how sick I am all the time. They just stop asking or calling. Its kinda depressing. I am so thankful I have you all who truly understand everything I am going through. I have found a church to go to and am very happy that way. It is a really small church and everyone is so nice. Hopefully I can begin to regain my faith.

Amey, you seriously crack me up!! Glad your bum is feeling better. Some things we just have to learn through trial and error. For me it was pizza and spagetti. No more of that!!

Judy, its so great to hear from you!

My thanksgiving is going to be very low key this year. Just going to my moms for a small dinner. She cant go out anywhere and is confined to her home. So it will just be my family and my mom and dad.

Hope everyone is doing well. Anxious to hear from Jen!

Love you all so much!

Hi All,

Glad to hear that Jen got a pic line (like I needed for 7 months and Peltzier needed for 3 years and didn't get.) That means Jen's surgeons have her best interest at heart. What happened to her as far as I'm guessing anyway (leak at the anastomosis or like someone said maybe perforation) can sometimes just happen and does not reflect on the surgeons. It is just one of those things.

I looked at her picture on face book and couldn't believe how young she is. I sure hope, as we all do, that she will be OK eventually. It is amazing what bodies can go through and be OK in the end.

Hodaya,

Yeah my 2 original 2006 surgeons actually just let some patient die of a leak at the anastomosis. They did almost a cookie-cutter approach surgery that they did to me (almost identical procedures), sent her home from the hospital without her having her first bm. She never was able to have one and went into severe agony. Her husband kept calling and calling the office. The nurse just prescribed laxatives which did not work. The nurse even took the woman's stitches out and the neither doc saw this patient though she had all these issues. Finally the nurse just prescribed some strong laxative. When the patient took it, her colon literally opened up and she went into peritinitus, sepsis, multi-organ failure and died. about a half day prior to her death, she was "rushed" (NOT!) into surgery and a temporary loop ileostomy was "attempted" but it was too late and she succumbed only 11 days post surgery. This suit was settled extremely quickly. These 2 docs don't just make errors, they deliberately ignore post-op symptoms and let people die. They left me with my colon closed in to only a 4 millimeter diameter. The medical board of our state just covers it all up. My goal is after my suit (win, lose, or draw) that I can find some way to expose them! I now have copies of all their prior suits plus mine. 8 in total that I know of. I periodically check the court house where they practice and a new one surfaces every so often. I have the evidence literally in hand. One of them is president of his county's division of the state medical society but who the he-- cares! People are dying by his hand of ignored complications. It is truly one of the worst medmal cover-ups in our part of the state. Had someone shut them down before I fell into their hands I would not have met with the fate I did. I sure hope I can accomplish my goal to save lives so my experience will not have gone in vain. I feel such a strong calling to expose them, that is why I cannot let go. It's all so scary it's surreal.

Anyway, I'm confident Jen will do fine in the end, as her surgeons are obviously totally with her.

My current surgeon who saved my life with the ileostomy ran a special research project on the STARR procedure. One day he said to me "It doesn't work." He is a man of very few words, very pleasant, but keeps his thoughts to himself. He is also an excellent surgeon and will save a person rather than cover for their first surgeon's screw ups. So when he speaks, I listen. AM only passing this on to you, to let you know his take. I don't know what the pateints' conditions were who had the STARR and it didn't work. But do some additional research and see a ton of specialists before you try this if you do.

Rosemary

Tracy, We have almost all been told that we have eating disorders. The first doctor I saw told me that and that I wanted to be thin. What the nerve!! He made me cry cuz he was blaming the whole thing on me. Like anyone would chose this. We are just so nauseated we do not have appetites. Its our bodies way of saying something just isnt right. Nobody understands what goes on in our bodies. I am very lucky that I have a supportive family. And this site of course. I am concerned that I may have a recectole. (can never remember how to spell) I just still have so many issues with going. Is that something that can be fixed? Or should I just deal with it? My belly is so noisy and moves around so much like theres an alien in there. I feel the urge to go but cant get much out. I just dont know anymore. Maybe I am just too obsessed with this whole pooping thing!

Hi everyone,

gone for one day - and there is so many posts to keep up with!

I went to church yesterday, then out to lunch with my parents, and then... I ran around town looking for things I need to have our Thanksgiving dinner! I came home and wanted to just rest! I really must clean my house somewhat since we are having family here for Thanksgiving! Afterwards, I plan to stay out of stores and avoid crowds.. I don't want to get sick!

Stacy, welcome to our group! This is the best bunch of ladies.. I swear you'll end up loving them all. I'm scheduled for a subtotal colectomy 12/9.. so just before you. I think we all have been through the sitz marker studies and more... I hope this will be the end of testing for me!

Marisa, we've missed you! I'm sorry you have been so sick, was it that awful flu that has been going around? Anyway, glad you're back to normal! When you got the infection 4 weeks post-op, did you end up back in the hospital? I'll admit - I'm a little fearful of complications, and missing Christmas!

Rosemary, it is amazing those 'doctors' are still able to practice! Reading your pre-op symptoms... one part does ring true with me, and that is having to put my body in a different position to poo. I have to lean to the left and back.. and strain so hard, my face is surely red! weird. However, all your other symptoms are totally different. My transit time is slooooow, and I don't rquire multiple movement..(sometimes 2.. because it just won't come out) but the enema's help move it - but in never blasts out! No doubt you had something going on.. but it is sad that the misdiagnose and treatment left you with a permanent ostomy!

Judy, I love when you stop in and chat. You're our amazing ray of hope and positive thinking! Even though you're in pain, have health issues and dealing with such crap with your job.. you take it and still manage to stay encouraging and upbeat! Now you got a gov. issue too.. gee, they are so hard to deal with, and it takes months and sometime longer to fix their boo boo's!! Thanks for the prayers.. with so many people praying for me, it gives me a sense of peace. I'm sending them out to you as well! Wonderful your daughter will be with you in a couple weeks! Hope you have a wonderful early Christmas!

Amey, glad your booty is better! Your reversal sounds like everything is working, do you still have issues with relaxing to go? I never talked previously about my bathroom habits to my husband, but decided to ask him how he goes.. and he is the same as your hubby.. he sits and it comes out! I have been straining and struggling for so long... I really had no clue what was 'normal' any longer!

Hodaya, I'm not a candidate for the starr procedure because of the mesh. I'm not even sure if I will ever be able to fix the rectocele.. or at least not without the chance of having a permanent ostomy. My doctors do not want to talk about it at this time.. and hopefully, it won't be an issue! I don't think I would be willing at this point in my life to take that chance. My surgery 8 months ago included a rectopexy, which should have helped the prolapsed rectum and rectocele (it has helped - it's at least 70% less) but it is still there OR it returned because of the excessive straining post-op. What I really needed during that procedure was the resection because my colon is so redundant, but it didn't happen that way.. so I think they might be doing a modification to the 1st rectopexy as well. Straining: I know it is very damaging to strain.. but I totally understand that you must, as I have to as well. I hate it.. because I'm afraid I'll ruin my other prolapse repairs! You really must address this with your doctor, you should not be straining so excessive.. maybe your rectal prolapse is back?

Lizzie, thanks again for getting updates on Jen! It does sound like she is in good hands.. thank goodness! So how are YOU doing Lizzie?

Janie, Like Rosemary's doctor mentioned...I have read not so great reports on the Starr procedure too. What do you mean 2 small rectocele's? Do you have an anterior and a posterior one (like I have) ? The posterior one is not very common.. and on the defecogram, it kinda has a T shape.. budges from left to right on a defecogram, where most just budge in one direction.. towards the vagina. Anyway, there are a ton of different ways to fix a rectocele, so you really need to research and get a few opinions. I know a few women who have had repairs and are 100% happy, and others who weren't. Surgery is not a guarantee it will be fixed (as I'm living proof). The good thing is you don't have the mesh as a risk factor, and the more I research, the more aware I am of how big a risk it is.. in many ways.

pelztier, thanks for the explanation to Hodaya about soluble and insoluble fiber.. I never knew or understood the difference!

Tracy, it is hard to keep up here on the weekends! Honestly, there are days I think to myself if I should call and cancel, but I don't want to love like this and I don't want wait and end up with an emergency situation, or wait and be 70 years old and facing this major surgery. I''m scared, but for me I know it is something I need to do. I'm sure when your time is right, you'll schedule the surgery and know it's the right time. Did you actually have surgery on the rectum itself - or vaginally? I had neither of those procedures.. just the sacral colpopexy, rectopexy and TVT sling along with a hysterectomy. The pulling up of the sacral colpopexy does fix the rectopexy in most cases, but for me it didn't. I agree.. surgery on the rectum itself is risky, and very risky in our case with the colpopexy and mesh. I know I don't want to take a chance on that at this point in my life!

Hi Tracy,

From the hystersisters web site there is now an abundance of information on hysterectomy that would have saved me from having one back in 1995. There is substantial research that hysterectomy, even done correctly and carefully, can seriously affect the nerves of the hindgut. I am really wondering if many of us who had hysterectomies basically incurred some sort of damage to the nerves leading to the colon and rectum. Then all we've had to do to poo or the space left by the removal of the uterus caused bowel and bladder to shift around, so that our stuctural issues are just secondary to an underlying nerve damage.

Now Hystersisters is lobbying to get a very informative video shown to anyone prior to signing consent for a hysterectomy. I know if I'd seen the video I would have quickly voted for other options: hormone treatment, hysteroscopic removal of the one small fibroid I had, and kept my uterus. The info was not there in 1995 when I had my hyst and of course a hyst is income for a surgeon. Mine suggested no other options and I went for two opinions. The one small fibroid was there every month but the heavy bleeding did not happen every month, so cause must have been maybe a shift in hormones entering perimenopause? The video came out in 2007. Today's women will be sooooo much more informed than we were. Lucky them.

Rosemary

Hi all....

Trying to catch up on everyone...Marisa, glad your back and feeling better from the flu, but sorry your having issues still. Its so frustrating. I am praying for you anf thinking of you.

Hodaya- I am still concerned about you lil one and being so sad. I am too and I know its hard, but maybe talking with someone or trying a medication temp may help you. I feel the resistance from friends. Even my best friend. I talked with her for an hour this morning and it seems she just does not know who I am and said I can fake being happy, but she thought getting rid of the bag would help and she thinks I am worse.

So Jenise- You ask about me....I have not been saying because I had hit rock bottom. I was so depressed and scared of the fact that I was taking laxatives again that I started drinking to numb my pain. Not a lot, but dangerous mixed with my meds. I just did not want to feel anymore. I had two weeks where I just did not care. I am ok....seeing a counselor, off some of my meds except antidepressant because of the way it was making me feel. I am still not sleeping at night.....just during the day :( I am going to be seeing my counselor weekly, not drink till i am off the antidepressant which i do not think i will need for long. I feel so much clearer not on medications. I started my herbal supplement to stop smoking today....I am done, and just want to put this all behind me, find me through counseling, and not think about pooping all of the time.

I know some of you may judge me for what I am going to say, but I did a little research and experimentation this weekend. I am not a weed smoker, but I had heard it helps with constipation. I did the research and found that the THC attaches to the nerves of the gut and causes relaxation of the muscles. I smoked a little in the am yesterday and had to run to thee bathroom and was able to go three times without laxatives. There is a pill called Marinol that has the same by-products as the smokable weed and I wonder if this would help with relaxation. Its actually used for nausea for cancer pts. I like Tracy, have herad of the topical nitroglycerin. So.....anyways. I am not going to become a pot head, but would like to try the pill form if prescribed.

Tracy- I think of you often and hate that you are still having do many outlet problems. You sound like i did before my emergent ileostomy. I could not even pass gas or any type of liquid. The ileo and reversal are still much better than where I was. I am trying to think positive. I will go through therapy as suggested and just pray it works and I can get off the laxatives if possible. I am having food aversions....scared of obstruction and like so many people on here they just treat you like you have an eating disorder.

To everyone else Judy, rosemary, Christy, Schmuel, Stacey, and the many I am forgetting I am thinking of all of you and praying for you.

PS. Jen talked to me a bit over email yesterday. She is very depressed and feels terrible. I told her that maybe jumping back on here some of us could share our complication stories or reassure her that everything was going to be ok. She has no way though of getting on a computer. I asked her maybe if a friend could let her use a laptop and her husband has been so busy he has not had chances to post. She thinks they have messed up her Wellbutrin and feels the depression has taken over. I gave her some reassurance as I have been through some very similar things. She was thankful....I will let you know anything else. If you email her on her FB that is how we have been communicating.

Lizzie

hi Lizzie,

I think the research you did on the medicinal form of pot and it's effect on nerves is fabulous....especially since it worked. one of tracy's surgeons said that as pharmaceutical advances are made, in years to come, colectomies may actually be viewed as barberic. I think what he was getting at is that one day science may find a medicine for colonic inertia, so your research may actually be right on target and on the cutting edge.

Hodaya,

yeah my 2 original surgeons and their past suits really scare me too....the fact that they are still allowed to practice scares me. My current smart, honest surgeon who said the STARR didn't work in his study didn't tell me about the patients in his study. for them it didn't work, but I'm glad it worked for you to a degree. i think any study needs to be taken with a grain of salt. I think that's the whole issue with all of this, what works for one does not work for another. So hard to make a decision. Then in MY case as I was given wrong information upon which to make a decision, that made it all the worse. So, it's a crap shoot to use a gambling term. No pun intended The suit is a LOT of work. What really worries me is that my 2 original surgeons do this same multi-procedure surgery on 2 patients per week, regardless of presenting symptom. They are out of control and nobody is following up to their deliberately maiming people.

How do we do facebook to contact Jen as much as she is able to respond. I can't figure out face book or twitter. I just got with it with forums and normal email. I'm "technically challenged."

Rosemary

Does anyone know if they had to do a temp bag on Jen or did they manage to rehook her and redo the anastomosis? If she has a bag I can give her helpful hints as the actual bag management itself; it isn't that hard (in my experience.) It's the working of the innards that are the cruicial part. She's likely still so ill she couldn't address any questions she has but if she does, I'm here for her. Rosemary (P.S. successful "Bag Lady" so far

Lizzie, I definately understand your desperation. I am obviously desperate to even consider getting hooked up to a bag. But nobody could possibly understand how desperate we really are..which is funny because the last doctor that I saw was like what we have is no big deal because it is not life threatening! If he only knew. Have you ever tried the nitroglycerin? I am going to ask him about it at my appt. December 28th. Can't hurt to try, right?

I am not a candidate for any starr procedure, or any pelvic prolapses surgeries of any kind. My doctor told me no surgery will help my outlet issue. I asked him if he could pull the rectum up, do something...he said NOTHING surgical will help seeing as this is functional problem. And functional problems are not understood! So, basically a bag is the only CURE for me.

Marisa, when did you last have a defecography? this should show easily whether you have a rectocele or a different issue in the rectum/pelvic floor. so if you havn't had it yet since surgery, i suggest you ask your dr for one. if it is found you have a signifecant rectocele/prolapse, your dr may consider surgery, BUT if that's the case, you should look very carefully into the risks of surgery and consult with more drs besides your surgoen. wow, so much to read yet!

MESSAGE FROM JEN:

I am still in the hospital recovering from the emergency surgery last Tuesday. Have been real sick but today seems to be a turning point. Ate some solids and cramping is at a minimum right now. I really think the pic line is helping since I am getting nutrition 24 hours a day. I hope to keep improving so I can be home on Thanksgiving. I tried to get on healing well but my computer won't let me for some reason. Just tell everyone that I have improved today. Thanks for your prayers and concerns.

 

Can everyone please add Jen to your morning prayer?  The power of prayer is amazing. I know that God willing, she can be home by Thanksgiving.

great news about jen, rosemary

Hodaya,

Thanks for the face book instructions. I'll give it a try. Rosemary