TOTAL COLECTOMY PART 27

Hi Doug - Thanks for update on Jen. Sounds like she has a touch of post-op ileus and that the solids (though not much) were a bit too much. Especially watch out for cheese. Are they giving her the option of hot cream cereals, yogurts, opaque foods, yet a bit more "gushy" than what she had last night?

Hodaya, sounds like some possible adhesion pain along your bikini scar line (?)

Lizzie, Sorry my technique didn't work for you. Try it again after your flu is gone; right now you have real physical sickness to deal with, but the idea may work after that resolves. Thanks for your reply re: my mashed potato blockage. I was super scared. I contacted my ileo surgeon about this as I was scared it might be adhesions. He did not really know what it could have been. He is wonderful and caring. He said he honestly gave it some thought and didn't understand what happened. Even with a good, caring doc....I do believe WE are the ones with the specific knowledge on much of this as we are the ones who are living it. Thanks again. Now I'm not so worried about adhesions. I'd just never had a food blockage and these are possible even without an adhesion issue. Sending you continued best wishes to feel good as you soooooo well deserve.

Rosemary

Yeah Jen, good to hear from you!

Yep, same thing happened to me, the minute they put me on those solids, I was right back where you are. Seems like every place rushes the solids. Tiny amounts of cream of rice cereal, yogurts (assuming you tolerate milk products), puddings. Insist on what you need. I backslid about 3 times; I took 1 step forward, 2 steps back. Best wishes, Rosemary

Marisa,
What laxative are you taking? My doctor told me to take Miralax, but I tried MOM tonight. I've gone some, I don't see much difference in this and prune juice actually. I only took a tablespoon, and really haven't gone much, but I feel ok. Even getting a little out keeps me from getting that awful pressure. The thing is in the morning I'll probably have to use an enema if I don't go more tonight. By then the pressure will probably be back.

My doctor did tell me one thing about my rectum. What he said actually makes sense; he said there's a chance my rectum may start working better over time. For almost 30 years, it really never had to work; I honestly only pooped with I took a laxative and that was once a week for most of those years; the last few years I went about every 4-5 days. He said that having stool in my rectum is new to it because all the years I took senokot, it pushed it out (blasted really!). Now having stool is something new and it has to learn what to do about it. I definitely have outlet problems, but maybe they will get better. I hope so, because this sure isn't what I expected after surgery!

Have you called your surgeon? I would definitely ask him about it and have him check you out. Did you have pelvic floor problems before surgery?

Hope your kids have a fun Halloween!

Janie

Happy Halloween :)

Just checking in......still have the flu, just thre up outside my car. I weighed 101.5 today so I keep losing and still have no appetite, but I also think this depression has a lot to do with my appetite. I had to take a little MOM today and I felt a little better, but I am barely eating so I do not know why i felt full today. I got out for an hour last nite which was good for the soul for my SIL bday.....just to see some civilization. Thinking of all of you.....miss you all.

Jen, good to hear from you....I had the same issue, I had an ileus for 9 days before I could tolerate solids, I was vomiting, NG and all.....so take it slow. Good to hear from you. I pray that things start to move a little better. I am 3 weeks today i think and my swelling besides this hematoma I have that looks like an alien is finally gone away. They did some major messing around in there. It all takes time. Thinking of you and praying daily.

eveyone else....its been a little quiet so i am not sur eif thats good or bad....hopefully your all out having a good time!

Lizzie

Rosemary,

He thinks I have the regular, but GI strain. I have nausea, aches, and intermittent vomiting. The thought of any food besides saltines and a little fluid makes me ill. It was good to get out.....just for a bit. I see my surgeon this Friday so I will see what he says. I do not know with all of this if I am slowly getting dehydrated. I am still a nervous wreck about my pooping, but just trying to get though each day. Thanks for all your support.

Lizzie

Lizzie, have you tried zofran for nausea? It helps me. I take it normally once a day, but can take it up to 3 times in a day. Phenergan doesn't help me at all and I can't take compazine or reglan due to a side effect called akathisia , which makes me feel like I am going to jump out of my skin. I just don't understand why you continue to vomit. How long have you been vomiting now? Have you had the small bowel follow through? Does your food stay in your stomch too long? I HATE to feel nauseas. What does your doctor think? Have you tried a liquid diet? I am pretty sure they are seeing vomiting and diarrhea with the swine flu????

Lizzie,

If you are still throwing up by Monday, I'd make an appt. to see my doctor. It seems like you've had this bug for awhile and you should be getting better. No wonder you're depressed if you're still feeling so sick!

Well I took MOM yesterday and today, but I think prune juice works better. Yesterday I took 15ml, and went some but woke up this morning feeling just packed in the rectum. I used an enema, but it took a few hours to get much relief. This evening I took 30 ml, and I've gone a few times but very little each time, but I have the worst butt burn I've had in awhile. I also drank miralax this morning and this evening. I'm not sure if I'm supposed to be doubling up, but the Miralax could take a few days to work (if it's going to) and i can't stand not going every day. I spend about 3-4 hours a day in the bathroom. I am so tired of this. I hate it. I constantly have a sore butt, I feel like I have a rectum of poop (which I usually do) and the only time I feel good is late morning after I'm cleaned out, and that only lasts until I eat again.

Any suggestions about the best time to take Miralax or MOM? I've got to figure something out or just stop eating.

Hodaya, I followed your diet today and not much luck...guess I'll stick with it for a few days but this has been one of the worst days I've had in awhile.

Wouldn't it be great if one day we would all be writing about how great we feel??

Turn your clocks back!!!


Janie

Jen - I hope your recovery process gets better. Please remember that you do not have to eat solids if you are not ready. You are still very new out of surgery and if broth made you cramp, your system may not be ready for solid foods. I find that insurance companies want doctors to rush patients out of the hospital as soon as possible. One day it's surgery, the next day its clears, then solids, and poof - your home. Take it slow. I felt like crap for 3 weeks after surgery and even now - week 4 and 4 days - I am struggling. I have to remind myself that healing is a process. I want to go to the store, or walk on Halloween w/ friends. I want to workout everyday or ride my bike 20 miles, but if I do, then I will suffer the consequences of not healing properly.

I hope you find rest soon. It's almost 3:30a.m. and I have been counting sheep since 11:30pm.

Take care..
Amey

Lizzy - I am so sorry you still have the flu! That is awful! I tried MOM today and wanted to DIE! MOM is sodium based and I have slivers and cuts all over my rectum....salt and wounds do not mix! Every time I felt like I had to 'go' I wanted to scream. When I was done, I would rush to into a hot bath. I think I will stick with prune juice. Like you, I normally need to drink something to stimuate my system. However, apples make me go. I have also learned that beans make me cramp for hours. However, a good ole' fashion turkey sandwich makes me feel great. My doctor wants me to eat high protein and high fiber. Beans are both...but that are bad for my body at this point. I still have very little appitite. I get a little hungry around 3pm and will have a protien shake. Then for dinner, I have something light - sandwich, chicken, fish, and such. I learned NOT to eat anything that will stimuate my bowels with dinner. I ate an apple a couple nights ago for dinner and ended up in the bathroom 15 times during the night. What can you eat? Are you able to walk a little? Keep me posted. I think of you lots.

Sorry for any typos....my brain is realy tired but my butt is hurting too bad for me to get sleep.

Janie, I have found that miralax is not as harsh as milk of magnesia. I took milk of magnesia for years....4 tablespoons everyday...now I will gag even if I smell the stuff....I am shuttering just thinking about it....LOL> The MOM caused me to cramp really bad and when I started miralax, I threw all MOM in the trash. Yes, miralax takes a few days to work, but once it starts working all you have to do is take some everyday and it will keep working. It builds up in your system, atleast it does mine. Now for me with a colon, it definately keeps me from having hard, dry bm's, but, it does not help anymore to move the poop through my slow, broken down colon. But, if I don't take it, my poop will get very hard and it is impossible for me to get it out. That is why I added senokot, but it hasn't helped much either. I assumed the senokot would help with peristolis, but it has not. And if I take too much senokot, it makes me nauseas.

Jen, I am so glad you are doing ok. I know you must feel like hell now, but you are still very early in your recovery. How is the nausea today? Have you thrown up? I have a horrible irrational fear of vomiting. How is the pain?

Amey, I know I am different because I still have my colon, but beans make me miserable. They make my intestines burn and swell so bad. I have a feeling I will never be able to eat beans ever again. This goes for most fiber too. I ate 1 fiber one bar and thought I was going to pop. Same thing happened with activia yogurt and fiber one yogurt. I can't eat any dairy products either because they make me more constipated.

Lizzie, hoping today is a better day for you.

Tracy,

I started miralax a couple days ago, but nothing so far...which is why I added MOM. Before surgery it never ever worked, but I thought maybe it would now. It helped me go a little, but mostly liquid and it gave me the worse butt burn. I didn't even think about it being soduim based, like Amey said. My butt is always pretty raw, so that must be why it hurt so much. I also took Miralax when I had a colon and it never helped and I tried it for a couple months, every day. I'm hoping it will work now. I just need to find something that helps blast the poop out!! Until it starts working, I think I'm going back to prune juice.

Jen, hang in there. You'll feel better in a few days. I didn't have a thing to eat for 5 days, and then started on broth on the 6th day. Broth made me poop nonstop for 24 hours, I had to get depends right away. The next day I had spaghetti and things were better. I guess everyone is different, but I was surprised they started me on spaghetti as my first meal! I didn't have a problem but when I got home, I was more careful about what I ate. I really think the only reason I didn't get nauseous was because I had the NG tube for 5 days; I always get sick to my stomach after surgery. I hope you're feeling better every day. I also got depressed in the hospital, but honestly once you get home in your own house, with your family you'll feel better. I'm sure part of your depression is missing your kids and worrying about them.

Rosemary,

You are so right about the insurance companies and hospitals. I had a double mastectomy 10 years ago and had to fight to spend 2 nights in the hospital! My surgery was done at 5 PM, so I didn't get to my room until midnight, so I had to stay then, but they wanted to send me home the next day. I couldn't pee (I always have that problem after surgery) so they wanted to send me home with a catheter and have me go to my local hospital to empty it!! I could hardly move my arms. I was throwing up because like I said, I always get nauseous after surgery. My husband was furious and adamant that I wasn't going home until I could at least pee on my own. He said "She could pee when she got here and we're not going home until she can pee again". Bless his heart!

Amey,

Things will get better and you'll be riding 20 miles again soon! As you know, it's a long recovery, but if you can be patient you'll feel better soon. I just hope you keep pooping! If you're going alot already why are taking MOM? I really don't like that stuff much. You are so right about the butt burn with it!!

Janie

Hodaya,

I seem to have trouble getting anything out sometimes. I just drank prune juice, but I drank some miralax earlier. I've gone about 4 times since breakfast (we went out for breakfast and I had an egg, few hash browns, bacon and 1 slice toast) but only very little liquid. My rear end is itchy and sore. I hate this. The miralax hasn't kicked in, but hopefully the prune juice will. I didn't like MOM at all.

Rosemary,

Yes, my husband can be quite vocal and while sometimes I want to smack him, sometimes his big mouth comes in handy!! LOL It really is horrible how patients are treated. I just wish I had bounced back after this surgery like I did after my mastectomy. I was back at work in 2 weeks with that and felt great.

Amey,
You poor thing. I know the first 2 months after my surgery, I went almost all the time, but every now and then something would stop me up. I would use an enema to start things up again.
MOM didn't work that well for me the past couple days. I went, but all liquid and I didn't feel cleaned out at all. I drank prune juice a couple hours ago, and I still feel so full, the pressure is terrible.

I don't know how long I can stand this. How terrible was the bag? I just want some sort of life back.

Janie

Tracy,
You're so sweet. Since I posted, I've been running back and forth to the bathroom, and I'm starting to feel pretty cleaned out. My poor butt is so sore but the pressure is gone....until I eat again!

I used senokot for 30 years; most of my adult life. That was the only thing that worked for me. I used senokot granules and started with a 1/2 tablespoon in milk once a week to 2 tablespoons full every 4 days or so. I really don't want to take senokot again; it sort of feels like if I take that, my surgery was all for nothing. I'll take it if I have to, but as long as prune juice works, I'll stick with that. I'm still taking miralax twice a day and who knows, maybe one day that will kick in. I'm just not sure with this rectal issue how anything will ever work. What I don't understand is why month 3 after surgery was so good. I took metamucil (small amount) at night, had a couple good bm's in the morning and throughout the day, and then took metamucil again at night....no rectal pain or pressure. Then month 4 it all stopped. I actually tried metamucil again a couple weeks ago, but it was terrible.

Honestly the rectal pressure is probably the worst thing I've had dealing with the constipation. I never had it before surgery and if I had known I'd have it every time I ate, I probably would have thought alot longer about having surgery.

Sorry to be such a downer. I'm usually not like this, but I'm just so discouraged. I was worried about having the runs the rest of my life. What a joke! LOL

What does your doctor say about you getting a bag, or have you talked to him about it? I think I'm going to go see my GI soon and see what he says. He was totally against me having surgery; he said in his experience most people end up with a bag....but I thought he meant because of loose stools all the time.

Janie