I haven't really heard of anything spreading through other parts of the digestive system. My surgeon told me the only that possible could be affected was possible the ovaries b/c of scar tissue. But my surgeon wrapped my "female organs" with some special covering to prevent that.
I AM FINALLLY HOME! Wow, do I have stories to tell you guys! Before I start my boring stories, just want to let you know... I am okay!
So I was admitted the night before, and they put the ng tube in and put the Go-Lytely downt he Ng tube. It was going fine, but the nurse decided that she wanted it to go faster. So she starts putting it in a syringe and pushing it down the tube. Well she walked out of the room and ten minutes later, I threw up HUGE amount of fluid... and the tube. I called my mom, just hysterical wanting to cancel surgery... just exhausted! Anyways they tried three more time to get the tube in and couldnt... so then they had me drink it. BUT... they mixed it with TANG... and it was almost GOOD. I would try that again in a heartbeat! I drank a few pitchers of that... had about 9 enemas and I was cleaned out for surgery!
Surgery went well, no complications. They did an upper scope while I was out and found old ulcers that I didnt know I had (perhaps the reason for my longstanding anemia). After surgery I had my usual anesthesia reaction... I only remember things from Wed, Thurs, and Fri that other people told me. I was moaning and swinging at the nurses. Pain was very well controlled, but I wasnt eating much. In fact, I miserunderstood the doctor who said dont push it...so when he put me on clear liquids 8oz per shift... I only drank 2 maybe because I wanted to be a good patient. Unfortunately... this did not prepare my stomach for full liquids. Monday night I begged the doctor to let me go home and he is like ok one more meal and I will release you in the morning. He encouraged me to try something a bit heavier (mashed potatoes and mac and cheese) well.... it didnt go well. I started throwing up and they put me back on the IV and back on clear liquids... I was so crying like all day. I felt like a failure and I felt like I was never going to get to leave. To make matters worse, I would be up walking in the hallways... and people would be like "wow, you look great.. you must be going home soon." LOL.. I would get back from my walk and just cry... and I was so scared that I made a mistake!
Anyways, now on clears I pushed it HARD! I drank lots... so when I got to full liquids I felt GREAT! I got out of the hospital on Thursday finally! Only bad thing, the nurse decided that it would be a good idea to take 2 pain pills before I left (I have a major history of allergic reactions to narcotics) by the time I got home... I was shaking, dizzy, blurred vision, and dry heaving ( nothing in my stomach to throw up). This lasted for the next 6-8 hours... in which I thought I was going to die. I was not in any pain (as evidenced by the fact that I was able to get on the bathroom floor 4 times and up) but I was sick!
Now, I am afraid to even take one pill. The pain is tolerable, but it sucks because I was so pain free in the hospital. This sounds weird, but I get so jealous of other people when they have surgery because they get to take good narcotics to alleviate their pain... and I always have to suffer on tylenol.
So yesterday home alone (long story) feeling pretty good (justa bit weak) trying to force fluids and applesauce.. I am in the bathroom when I noticed there is bloody fluid all over my clothes and the floor... yep part of my incision split open. My best friend stole supplies from work... I called the surgeon on call... took off my own steristrips.... and pushed the incision together and restripped it the doctor says "thank goodness your a nurse." LOL, I was more annoyed then scared... but now I have enough supplies so all is good. Today I have about 48 ounces of fluid down and some mashed potatoes... feeling GREAT!
Any questions... LOL.. I will answer all! Also, I think my surgeon is extremely unique compared to everyone else's. He does a lap/open combo. I have an incision from my belly button to my pubic region, was closed with staples. I also had 4 small lap incisions all closed with staples. Also, I am still on a full liquid diet until next Thurs... well full liquid with a few extras (well cooked cream soup or veggie, mashed potatoes, and scrambled eggs).
Thanks for all of the love and support. I thought of you guys ALOT when I was in the hospital. Honestly, if it wouldnt ave been for this group, I dont know what I would have done. The nurses were great... some adopted me and would hang out in my room before and after shifts (what can I say... Im fun)
One difference though... I dont have diarrhea right now. I go about 2 times a day... very liquidy... but controllable. What kind of diet did the rest of you go home on... maybe this is why?
Filled with questions (maybe more than before),
I'm glad your home. We all have our war stories from the hospital. I was sent home with a low residue diet. That sort of sounds like what you're on - applesauce, creamed soups etc. I ate a lot of yogurt and drank smoothies too. How is your weight? My doctor doesn't seem to worried about mine. He said I'll put it back on eventually. I got some ScarGuard Lightener today. Hopefully that will help the redness from the steri strips.
I go back to work on Monday. I'm a little nervous because I am still going about 8-10x a day, especially after I eat and it's still pretty loose, but it's better than not going. I'm also close to a bathroom.
It'll be six weeks on Wednesday. I feel pretty good. I actually went to the track today and ran a little - very little. But I am able to walk several miles with no discomfort. I'm eating fruit now, but I'm still afraid of salads. Maybe next week.
Keep us posted Emma. You're in my prayers.
Well, I feel like an idiot! I wasn't being notified of the new postings and just started my own Total Colectomy Part 4. So ignore that posting.
Emma, I'm soooooooo relieved your home. You had me so worried. 19 pounds, I'm so jealous -- if only that could happen to me, I'd be ecstatic! It seems like I've been gaining a half a pound a day for the past week or so. I got the pre-op info from the hospital and it said no herbs, which means no Senna tea for me (the only thing that seemed to work some of the time). So I called my surgeon's office and asked what I was supposed to do; I was scared that if I did nothing, no way would the prep work this Tuesday. So they told me to go on Magnisium-Citrade -- yuck -- and it's barely making a dent. All that's really happening is that my tummy is getting more and more bloated by the second. Well, I drank all I'm going to drink of it last night and just planning to cross my fingers from this moment on that the prep will work on Tuesday.
Your 'war stories' sounded exhausting -- I just can't see you swinging at the nurses. But you sound really happy to me, so I guess whatever it takes is OK.
Zoe, if the scarguard doesn't work, ask about laser treatments! Also, I got a phone call from a woman who had a subtotal colectomy 3 years ago for constipation (my second oppion doctor referred her to me, which was so nice of him to do). Anyway, she said that when she started working, she took an imodium once a day, which seemed to really help her. Now she only goes 3 times a day with no imodium. The bad news (at least for me) is that she said she didn't lose any weight. Emma, she also said that she ate whatever she wanted after the surgery -- she did say, however, that salads bothered her for the first few weeks, as did coffee.
Now that we thankfully have Emma back, has anyone heard from Sara lately?
Amira - thanks for your concern. I read your email when I was in the hospital and it gave me strength. Dont worry about the dreams... its your conscious getting out emotions! You will be fine and I will pray for you! I had a dream last night that I had to go back to surgery... but then later that night I had a dream I was eating a hamburger... LOL.. dreams mean nothing!
Still feeling good today. Took my first shower and washed my hair... god that felt good!
Did anyone notice that food tasted different? I used to love water prior to surgery, and now i think it tastes funny. I am drinking TONS of SF koolaid so that I get my fluids in.
Almost feel well enough to do some organizing around the house :)
Did you ever notice that when you cannot eat, food commercials look so good. Like lots of stuff is advertised and it doesnt even phase you. I am DYING for those BK chicken fries... I am sure they are not that good... and normally they wouldnt even excite me. You know what else I am dying for... a hamburger. Specifically a barbecue bacon cheeseburger... why is that funny? I have not had a hamburger in 2 years (dont typically eat them) How long will it be before I can satisfy these cravings?
DBF wants me to ask those of you that have been through this... if you put food in the blender wouldnt that make it good enough to eat on the modified full liquid diet? I say no... but he disagres with me..
So many new friends:) Such a great group of people we have now. I haven't written in a while but I have tried to keep up by reading when I can. Just wanted to give an update on life....about 7 months out.
Eating just about anything. There are a few things that still bother me..... salad, peppers, onions, nuts. I don't know if anyone is also several months out but has anyone had a solid BM yet??? I still have loose BM's or a lot of water. I try hold it almost all day sometimes but still very loose. Any weight I put back on went right to my ass! Bummer:( Still going about 3-5 x's a day and usually once at night.
Sara~ I ran my 10-mile race. It was a beautiful night and the race is right off the ocean. Definitely not my best time but I ran the entire thing! A bit of a stomach ache after but nothing I couldn't handle. Did have the feeling i needed to go to the bathroom about every mile. You know that feeling when "it" drops down and you want to run to the bathroom. But it's done and I did it. One thing I did notice is that I didn't sweat much. I wonder if that is b/c there isn't alot of excess water in our bodies w/o the colon to absorb it? Anyway, How are you feeling? Sounds like you've had some bad days. I read back where you had some spasms in you intestines. Did you find out what that was all about? I was curious b/c I have been having them every now and then. Sometimes they are so bad I told my husband I was going to drive myself to the emergency room. Thank goodness I had some left over pain meds, had to take one to function. What is Librax your doc prescribed? Did it help. I didn't call the doctor b/c I just couldn't bear the thought of doing anymore tests! I so hope you are feeling better. Your so sweet, even when you are feeling bad your still so up beat and always have encouraging words for everyone else.
For anyone who has had a recent surgery, I do remember using a heating pad to help with the pain. It worked for me......it's worth a shot.
Emmaleigh~ Man, I hope everything is going better now! What a sucky experience! Good thing your a nurse. Don't worry, you will be eating every you used to before you know it.
Good health to everyone!!!!
Sommer - just a cautionary piece of information (the nurse in me just couldnt let it go) You should NEVER be holding it in... if you have the urge to go... you should be going (except when you are running a marathon. If you dilate that rectum area too much... it could put pressure on the suture site where they joined your small intestine and rectum...if that enlarges you could have problems with leakage... which would be bad..
Ok rant over... love to all,
Thanks for the congrats on the run!
Sara ~thank you for the info on the Librax. Just one quick question... do you take it everyday, like a prescription or just when needed? and why is it addictive? Doesn't it just help with the spasm and the swelling of the gut? I have an appt. w/ my doc on Thursday, I will def. ask about it.
Emma ~ Thanks for your info but now i'm confused. My surgeon specifically said to try and hold it as long as I could and it would help to form the BM. He also said it would help to train my ... think he said rectum to hold it longer. He told me this right from the beginning....right when I left the hospital...to hold it. Do you think some of the spasms I've been having are from pressure on the sustures? Yikes! Don't want that to come apart!!!! Thanks again for your concern:) It's nice to have you and Somer (nurses) to chat with.
It's so great that everyone is doing so well! We all have unique stories...and that's what's great to share. Especially for people who are pondering surgery or getting ready to go in.
Amira, good luck this week! we'll all be anxiously waiting to hear how it goes and to make sure that you're doing well during recovery :)
Zoe, I agree with the Imodium idea. I just had my 6 month follow-up with the surgeon and he suggested Imodium when I told him things were still very watery. We laughed because he said I probably didn't know where it was located in the store....ha ha. He said not to worry that I'd become dependent on it....it just helps you have formed BM's and less water--not necessarily constipation. Plus it's good for absorption of nutrients too. Just a word of advice on the salads--I was so excited about salad and a regular diet, I think I overdid it a bit at first. Be sure to have other starchy foods with raw veggies or some protein, cheese, etc. at the same time--veggies will probably run right through you at first. So far my fissure is healing on its own, and the surgeon said that salad, etc did not cause it, but I have a feeling that it may have contributed to it or at least not helped. It's hard when your diet is heavily salad, fruit, etc....I was so tired of all the starch and bland food after 6 weeks--couldn't wait to add in more food.
Sommer--congrats on the run--that's great! A huge accomplishment given everything you've been through. It's funny that you mentioned salad, peppers, onions, and nuts still bother you. I had the best grilled veggies last weekend for dinner, and then my fissure flared up for a couple of days and I was going to the bathroom more frequently. it's so hard when food is so much more enjoyable now. I've taken it easy on nuts and seeds--especially watermelon (even the little white seeds!) and cucumber. It's easy to remove them before eating...
I don't remember who asked a while ago about the weight loss/gain...I did lose 10 lbs in the hospital, and have gained most of it back. On the other hand, I feel like I eat more now than before, and I'm not gaining weight. But, I started working out again after 5-6 weeks...so I think I've regained it in muscle at least. I just feel so much better and so energetic! Before surgery, it was like going through the motions to work out, etc...now I'm definitely doing more and pushing myself. It's a long recovery process...my abdomen still hurts occasionally too--mostly soreness after a lot of activity or if I eat too much at once.
Emma, I know you're a nurse, but take care of your incision! An infection right now would not be good (sorry, but I recently heard about a woman who had a horrible infection post-surgery due to a perforated intestine during surgery). I know this isn't your case, but just be careful. And add solid food slowly....I ate english muffins and toast for weeks! They were boring...but great stepping stones to more solid food. For whatever that's worth anyway...
Take care everyone!
DON'T MESS UP!
· NO LEAKAGE!
· NO BAG!
· NO NICKS OF ANY KIND!
· NO SMALL BOWEL OSTRUCTIONS!
· NO NASAL GASTRIC TUBE!
· NO ENDOTRACHEAL TUBE!
· IF UNDER ANESTHESIA FOR LONGER THAN EXPECTED, WHICH I SHOULDN'T BE, DON'T FORGET TO THIN MY BLOOD -- NO BLOOD CLOTS!
· WILL ANALPRAM HC HELP WITH BUTT BURNS? IF YES, I NEED A PREscriptION.
· IS PHAZYME THE BEST PRODUCT FOR GAS PAIN, OR IS THERE A BETTER PREscriptION MEDICATION? TELL ME about LIBRAX. HOW SOON WILL I BE ABLE TO USE PHAZYME (OR WHATEVER) AFTER SURGERY?
· SHOULD I BE ON A LOW RESIDUE DIET? IF YES, FOR HOW LONG?
AGAIN, DON'T MESS UP!
Amira - I would just take it off your list. True you do not want one while you are awake... but legally that could be misconstrued down the line if something were to happen. Although none of us would want this, it would be a livesaving procedure so it could be necessary. By saying no ET tube, it could be misinterpreted as a "do not resuscitate" order and cold cause problems
We had a open heart surgery patient that had a similar list... and there was alot of confusion with this statement... so I would remove it.
How is the prep going? Are you getting excited! I am still only having 2-3 Bms a day...
Thinking about chicken fries,
PS. Anyone think I could have them on a soft diet? Especially if I chewed them REALLY well...