Total Colectomy part 26

Went to the new guy today. Results from the small bowel follow through was normal...YOOHOO

But I don't like him and will not use him. He was not very friendly today and seemed defensive when I questioned him about my rectal problems. I said, I understand my colon does not work, but you have not addressed the defogram and the reason why I could not expel the barium. He says hmmm, then flips through my chart and sits right there and reads the report...I don't think he ever reviewed it. He says, well, you obviously have pelvic floor dysfunction, but this could be a plus when you have the total colectomy to help with continence. WHAT THE HELL? I said, no, I won't be able to poop the diarrhea out because something is wrong with my rectum. He said, I guarantee you, you will be able to have bowel movements. I said, ok, well when you do the total colectomy, can you hook me up to a stoma temporarily so the connection can heal and give the rectum time to rest???? He said that won't help nor is it needed. He said, well, if you WANT a stoma, then I will just leave the colon in and hook you up to a temporary loop ileostomy. I never said I WANTED a stoma.....I told him I am more worried that the rectum will not work after my surgery and I won't be able to disimpact the poop from my rectum due to post surgical pain in the rectum. I told him after the sacralcolopopexy I was in tremendous pain because I could not push down to empty the rectum, and that I had to disimpact and it was so painful that I cried hours everyday because my rectum was having such spasms and that my doctor had to prescribe muscle relaxers because I was in tremendous pain. I asked him, could I have nerve damage to the rectum? He said it is possible, but didn't seem to comprehend the major issue that I have with my rectal outlet problem. I told him, the colonic inertia is not half as bad as being unable to push the stool out normally. That is what takes so much time. It is a disgusting way to live and very embarassing. He didn't seem to care one iota.

He stressed how this is not life threatening...this is not cancer, or chrohn's or colitis or colon cancer....I told him, I KNOW THIS IS NOT LIFE THREATENING, but I can't poop and it takes half my waking hours to poop a teaspoon.

I am very upset, crying and blubbering right now. I am sick and tired of this crap. He acted like this was no big problem and I needed to stop belly aching about it because it could be cancer.

I basically told him I am doing nothing until the rectal issue is either fixed or I was told that it could not be fixed, and I would go from there. He then offered for me to take biofeedback. So, they are checking to see if my insurance will pay for the biofeedback and I am going to go for atleast 3 sessions...atleast maybe they can tell if there is nerve damage to the rectum. I will also have the report sent to my other doctor, doctor #2.

I am so upset I have been thinking about not taking any laxatives, using no suppositories and then we will see who has a life threatening issue...maybe someone will think it is a major issue then.

Sorry girls, just needed to vent. I can't quit crying. If I was a man, I bet he would of been way more sympathetic.

Tracy

 

Tracy
I am so sorry you had to go thru this but, this is what we deal with until it is an Emergency. Please dont give up. I would recomend untill you see dr # 2 to try a semi liquid diet, cut out all pasta, potatoes, rice, bananas, and foods that have a lot of preservitives. I know its frustrating.
Drink tons of liquid. it doesnt necessarily have to be water, but try lots of juices. Orange juice, grape juice, plum juice. Stay away from apple juices, they dont tend to work for me. Also, this sounds crazy, but, I also have gerd and reflux and anything else that causes heartburn/indigestion ect.... and i notice that if i run out of my prescription and i take an over the counter pill proton inhibitor. It actually helps. One more thing that i have used in the past is Reglan. Now, its for nausia and used to empty the stomach but it helps. All of the digestive system is the nerves so in a way the dr ( i hate to say it ) is partially right about the laxitives. your body is so use to the stimulation. The reglan seems to work but i only use it when i am desperate because it has been linked to parkinson type symptoms. I look at it this way, if i dont use it and get another blockage, i could die. So, its worth the risk sometimes just to get the body moving. Please, Please, try the plum juice. Go get 2 bottles, and drink half of one, then chase it with 2 glass's of water. Then in an hour, do the same with the other half. Now, you need to do this when you can stay in for the night and dont have to get up early in the am.
I drink a glass when i get home from work every day so in the am, i usually go. Some days i keep a bottle at work, and fill my empty bottle for my drive home. That actually works better for me. But, Even tho it works for me, sorry to say it might not work for oyu. All u can do is try new things but if you are an organized person, start keeping a food and drink and poop diary. Take it with you to every appointment and dont allow them to make you doubt yourself and dont give up.
Your body is telling you something. Listen and keep your chin up. Dont give up on your quest to a healthy and some what normal life.

Kristina, I have taken 20 doses of miralax this weekend and just took 2 more since the poop has stopped and my poop was still white from the barium the last time I went last night. I can get the water moving in my colon..but I CAN"T POOP it out. I have a major outlet issue...MAJOR< MAJOR< MAJOR> I need a long straw with a vacuum on the end and then I can stick it up into my rectum, all the way into my colon and just suck it out. I am so tired of this. I am going to the store to buy some plum juice right now. I will drink it when I get back. Hopefully it will help me since the doctor obviously can't. I smoke too and smoking used to help me have a bm...but that has been about 20 years ago. Now I am just an ole nasty smoker.

Tracy, I'm so sorry to hear this appointment did not go well. BUT YOU KNOW YOUR BODY BETTER THAN ANY DOCTOR. Doc #2 had a better grip.

I was caught in "analysis paralysis" in 2006 when I was trying to make a decision about my sigmoid removal. BUT I was being given false info so naturally my decision was wrong! The resident mistook a loop of small bowel descending on a defecogram for my sigmoid colon (which it turns out on medical review this year, did not descend).. I made a wrong choice because I had wrong info.

You are actually in a much better spot than I was, you are being given correct info: colon not working, pelvic floor/rectum not working, small bowel works fine.

If you would like I could give you the contact info for the Lahey Clinic up here in Mass. It's right outside Boston and we could meet. That would be so awesome. Though that is where I ended up for my ileostomy which saved my life from all the gut scarring from the 2006 surgery, I realize they have an excellent grip on the whole issue of pelvic floors and all other aspects. I wished I had started there. You have all your tests, I KNOW they could help you put this together.

Let me know. Take time to feel better. It sounds like you need a break from this whole issue. Maybe consider at least maybe a temporary ileostomy, just to help you clear your head and give you a rest from this long, hard battle you've had to wage. Then with renewed vigor you could do more go-rounds with this pelvic floor issue. A surgeon at Lahey is an expert in laporoscopic surgery. I'm sure he could do a lap ileo for you. (He's so good he's currently giving a demo in Helsinki Finland, they guy is gold, I'll tell you.) (My disclaimer, I am not a doctor, this is just my take and reflects how I think I might feel if I were in your shoes. We all have to make our own decisions. I wish you some peace with this. AND yes, you are right, If you don't keep things moving, this will become life-threatening, this is not cancer, but this is also very serious. We all need to get as well as we can and then put on an educational seminar for some of these doctors!

Sincerely, Rosemary

Tracy

Are you sure you didn't go to my doctor? He seems to have the same attitude. And it just pisses me off to have them tell us "It's not cancer". We KNOW that, and I would never compare what I have to a cancer patient. BUT it doesn't make it any less agonizing for us. It's a miserable way to live and even though it may not be live threatening, it can be life altering. I defintely wouldn't deal with that doctor. I've been with my Dr. for almost 2 years, and I am waiting to see how our next visit goes. If it's not 100% better than the last visit, I'm moving on...for sure.

Also, don't let the doctors promise you that the colectomy will solve your rectum issues. You know, there's a chance that you will be able to go after surgery, but there is no guarantee, and even though my doctor made no promises, when I asked what I would do if I still wasn't able to go, he said "We'll deal with that if it happens, but I honestly don't think you'll have that problem". Well, I do have that problem and his immediate way to deal with it was to tell me I have an eating disorder.....so just be careful to find out what the next step would be if that happens.
Gotta run, but will check back later. So sorry you had to deal with that doctor, but at least you know before he cut you open! LOL

Karen, my dear friend, it's so nice hearing from you :o) you've always been so supportive.. thank you! and no, i'm really not intimidated talking about a bag. i'm amazed at how at peace you are with yours, and even thinking of keeping it..!! you go with your heart and do what you feel best for you, but you also have to realize that even if you're grounded to the loo at first, there's still a great chance it'll slow down and won't stay like that forever. it can even take up to a yr or two for things to settle, so maybe it'll be worth it to go through the first rough period of time till things settle down. you must weight your pros and cons and see if you're willing to try. if i can't find peace of mind, if this lasts too long and don't change, it'll only be a rational option for me too to consider a bag. but i do need to give it more time, as things are bound to slow down, so i guess i'll have to wait and see for a while. i talked with my boss today and we've agreed on me working 12-17:00. i said i wanted to try to come at 8 am and work till 16:00, but he said lets take it slower and see how we continue from there, so i agreed. at least now it should be much easier for me. Karen, i truly wish you the best with whatever you decide to do and pray that whatever it is, you'll be happy with it!

I all, I'm on the ship and trying to stay up with all the posts!!

Tracy, how disappointing to hear another jerk of a doctor! What's wrong with them!!? Obviously, they don't know what it is like to live with these issues!

I myself, have always had constipation, but I was always afraid to swallow laxative, and have used enema's and suppositories. My GI sad "thank goodness.. they are safe", so that blows the laxative theory out of the water.

Tracy, I really didn't have issues with my rectum before the prolapse repair, but have since. My symptoms are like yours and it FEELS like my rectum doesn't work, but it really is "higher" up... Did you ever have the barium enema?

On the flip side.. I almost think my surgeon is being TOO careful... I have had 3 other doctors reading all my reports and agree that I need to have part of the colon out...I almost get the feeling he is afraid of the mesh - and wants the uro-gyn to fix... OR he thinks it is the rectocele causing the problem, and I KNOW that is not it!

I'll catch up with everyone else when I have more time!

Love to you all, and take care!

This is not cancer but i am living proof that it can kill you. That didnt sound right :) The name of
that disorder is called intestinal pseudo obstruction and another one i looked up is ogilvie syndrome. Basiclly the pseudo is just a fancy name with side effects of colonic inertia but I learn something new each time i read about this stuff. In the things i have read, some are saying it could be linked to a gene called DXYS154. Hey, just 5 years ago i thought there was no transplants for bowels and as i do more research i find they are trying them now. small bowels but still.
I would highly recomend the soft diet for a couple of days to try and flush yourself out. then try a new thing each day and keep a food journal or have a great memory . With each new year i live with out my intestine, i learn about new things. Like i said, before i was in the er in Hawaii never once did a Dr. or gastrointerologist every mention to me about a sitz marker test or colonic inertia. I am sure this is a dumb question but everyone has been tested for schleroderma right? What about MS? One of my customers when i did hair had to go to a bag because of her MS. Just a thought. You guys all are Awsome !!!!!

Hodaya,

I know some things stop me up for sure....like pizza and most meats. Chicken never has bothered me and sometimes it actually goes through me. Tonight I had chicken and zuchinni; we'll see what happens. Watermelon used to give me diarrhea for the first 3 months, and now it doesn't seem to bother me one way or the other. Carrots don't go through me for days (I actually see them when they finally come out) so I stay away from them.

I do drink alot of water throughout the day....lots. I'll try tuna. I ate that quite a bit at first, but it's not my favorite...but I can eat it. It's just hard because I have to cook for my husband and I get tired of eating the same things. I've found some things that absolutely need to be avoided, but other things, like ice cream, make me go. I can't figure it out. Sherbet doesn't bother you? I thought ice cream would, but it gets things going for me rather than stopping me up.

Weird, huh?

I'll try your omelette suggestion for tomorrow night. My husband just gets tired of my meals, which I keep pretty simple most of the time. I'll just tell him tomorrow we'll have breakfast for dinner!

Glad you're doing ok at work, and it's great that you have a good boss to work with you!

Janie

I forgot to ask, how is Lizzie? I'm worried, she has not posted today. I hope she did not get that infection. I hope she posts soon. Rosemary

Kristina, I read about the Ogilvie's syndrome and I don't think I have this. I am not sick at all...just fed up and full of it. HEEHEE

I had a colonoscopy 3 years ago and it read normal....I had a ct scan 3 years ago and this summer of 09, all organs look normal....Xrays have only revealed moderately fecal distended, but I have colonic inertia....so this is to be expected.

I truly think I have either nerve damage to the rectum or maybe the rectum is scarred from 2 surgeries I had in 2000 for hemmrhoids and an anal fissure. They clipped my anal spincter muscle with both surgeries. As I look back, I can see that this is when I started having minor problems getting the poop to move while pushing. But it was livable and doable...that is until 2005 when I had my hysterectomy and pelvic prolapse repairs...that caused MAJOR problems with me pushing bm's out.

I then turned around in 2006 and had another pelvic prolapse repair, a sacralcolopopexy, which is where the doctor sewed mesh to my entire pelvic floor and anchored it to my tailbone. He also did a vaginalplasty(sp?) which is where he tightened the vagina and removed the urethra sling I had installed with my hysterectomy because it had eroded through the urethra. I also had a fistula from the sling eroding. This is a very extensive surgical history and that surgery alone was 5 procedures. The hysterectomy was open and the sacaracolopopexy was laprscopic.

After that last surgery my "good" days were to be no more. No more normal bowel movements. I could not push then and I can't push now. I went back and forth to the urogyn because I trusted him and told him, I can't have a normal bm...something is very wrong with me. He just looked at me like I was insane and sent me to a gastro doc. Gastro doc ordered colonoscopy and ct scan...said I was normal other than 2 polyps, and told me to drink more water, increase fiber....he also said I was just too young to be having these issues and pretty much dismissed me and sent me to a colorectal surgeon.

This is when I was officially dx with colonic inertia and rectal outlet issues. The doctor really thought I had hirsprungs, but I had the anal manometry test and it was not normal, but did not indicate hirsprungs. AND SHOOT, I was really hoping for a hirsprungs dx so that there would be a plan of action.

So, sorry to ramble, but I think it is some type of damage to the rectum from all of my previous surgeries. Nerve damage, something? What do you think?

Hi Tracy,

Now that you wrote out all of your surgeries chronologically, it would certainly be possible that you have rectal scarring and or nerve damage. You've had so much surgery. And that is what we fall into as women, especially birthing large babies, having hysterectomies and so on. Then male doctors tell us it's "all in our heads." I don't mean to sound sexist. When I had scarred-in guts, a woman doctor actually told me it was "all in my head." So I just blew my own theory out of the water, but still, it's certainly unfair that we go through all we do and have docs that are unsympathetic. Do think about medical travel Tracy. Cleveland Clinic is one of the best intestinal centers in the world. So is Lahey, George Washington University, and according to some people's experience, the Mayo Clinic.

Lizzie,

Good to hear from you, I was getting worried as I expressed in one of my posts. Glad your still pooping, but that pain issue has to be brought under control. Did the doc say why he thought the area you described was so hard? Good luck, glad you live near the hospital.

Sincerely, Rosemary