Please Help! 5 weeks out from surgery!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lild
Regular Member


Date Joined May 2010
Total Posts : 227
   Posted 9/27/2011 6:33 PM (GMT -6)   
I don't expect everything to be perfect and I knew there would be bumps, but I didn't expect this:

I had my 1st of two surgery on august 22nd. Intestines took a long time to wake up, vomitting, ng tube, terrible cramps... Blah, blah, blah. This I knew would happen. After being in the hospital for 2 weeks I got to go home. Less than a week later I'm nausea again. Got re-admitted to hospital and was way behind on fluids and I had a partial obstruction that ended up clearing on it's own. It took several days but I was released. At home I felt so weak and tired. Still in pain and then I see the cycle starting. No appetite, weak, a hint of nausea and I went straight to the ER.
Come to find out I overhydrated myself and sodium was low!!!! I drank too much water and "washed my sodium out". After giving me fluids they let me go in a day. Now I'm back home and I do feel better. But I'm totally freaked! This whole process is such a fine balance. I'm scared to make the wrong move.

Please help! Anyone else here like me? Any advice? Is this usual.
I just need some reassurance. Thanks in advance.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/27/2011 9:30 PM (GMT -6)   
It can take a while to get the hang of it, you just had a body part removed! its a huge learning curve. For your dheydration, eat some salty foods, along with water. That
helps you retain the water. And actual plain water is the best thing to keep you hydrated, the sugars and sweetners in other things will make your output more frequent and actually work against you.
I sometimes get a little dehydrated still, but I've learned the signs and when I feel them, I have something salty and chug some water!
You will figure it out, just take it slow, if you feel too tired to do something, don't push yourself.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/28/2011 7:19 AM (GMT -6)   
Instead of hydrating on water, try getting some electrolyte beverages. I like Vitalyte; it's low in sugar and has more of the good stuff than the commercial beverages like Gatorade. You can also sip bouillon. Eat salty snacks too as they will help you to retain fluids.

This most likely will not continue to be a challenge for you and consider it one more bump along the road to recovery. That being said, you will need to figure out what your hydration issues will be once you have six months or so of recovery from all surgeries. I drink 20oz of coffee in the morning and then nothing until I go to the gym in the late afternoon. That works for me but wouldn't necessarily work for another colonless person. My hydration needs go way up during exercise and I can out drink anyone on a hiking trail. But I know this and prepare for it.

Sue

lild
Regular Member


Date Joined May 2010
Total Posts : 227
   Posted 9/28/2011 9:44 AM (GMT -6)   
Wow! It is really is a fine balance that I guess I am going to have to learn. I have a 4 month old that I have been having to leave with my in-laws each time I am hospitalized with breaks my heart! So I am really trying my hardest to not go back since I fell like I missed out so much. This whole process has been so hard emotionally and I have spent so much time crying in frustration. I am ready for the good times!

Should I expect the cramps to continue as I fine tune my diet or will they slowly diminish?

I am hopeful that if all is healing well I will have my second surgery sometime in November. How is that recovery? A lot less harder I hope!

Thanks so much for the advice! I really appreciate it.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/28/2011 9:56 AM (GMT -6)   
Cramps will definitely diminish but do expect to have lots of gas pain after your second surgery. That too will pass once your flora is rebalanced. Second surgery is physically easier to recover from but can try your patience.

Sue

lild
Regular Member


Date Joined May 2010
Total Posts : 227
   Posted 9/28/2011 10:23 AM (GMT -6)   
Does anyone continue to take probiotics? Will they be of benefit to me or are they pointless since I no longer have a colon? :)

Well I can tell my cramps are less intense so I guess that's a good sign. I should walk more. I'm just so tired all the time.
29/F married Dx w/ UC 7/09 (Symt 3/09) 6/10 dx w/ pancolitis Remicade since 7/10; Pred. at times for almost over a year
VSL #3 DS, Serovera Aloe, Mesalamine, oral and enema.
Tried to tackle SCD Diet! Even modified
In the end all all meds failed. Colon beyond saving :(
Colon removed Aug 22, 2011.

lild
Regular Member


Date Joined May 2010
Total Posts : 227
   Posted 9/28/2011 10:26 AM (GMT -6)   
O yeah! I forgo to ask this: I am having crazy intestine sounds. It literally sounds like a fountain of water pouring in my gut. Is this normal?

Will my stoma always fart? At least I can blame that noise on my little one!!
29/F married Dx w/ UC 7/09 (Symt 3/09) 6/10 dx w/ pancolitis Remicade since 7/10; Pred. at times for almost over a year
VSL #3 DS, Serovera Aloe, Mesalamine, oral and enema.
Tried to tackle SCD Diet! Even modified
In the end all all meds failed. Colon beyond saving :(
Colon removed Aug 22, 2011.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/28/2011 10:30 AM (GMT -6)   
The noises will go down, once you are farther out. Mine rarely makes noise unless I get hungry.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/28/2011 10:54 AM (GMT -6)   
I'm 10 years with a jpouch and I take probiotics daily. I don't know if it helps but it can't hurt.

Sue

smackie
Regular Member


Date Joined Feb 2011
Total Posts : 55
   Posted 9/29/2011 7:57 AM (GMT -6)   
I take probiotic yoghurt with my ileostomy.

Doc recommended it. His thoughts are that it can't hurt. I'm happy with that (and it's really yummy yoghurt)
Jul 06 - Dx with Coeliac
Sep 06 - Dx with Crohn's
Oct 10 - Pancolitis subsequent to a campylobacteriosis infection
Dec 10 - Dx Crohn's (GI) / Dx UC (Surgeon) / Dx Indeterminate colitis (Pathologist)
Dec 10 - Subtotal Colectomy & End Ileostomy [complicated by high dose IV steroids]
2011 - The year of recovery
2012 - Ileosigmoid anastomosis? J-pouch? Total proctocolectomy?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 9/29/2011 9:10 AM (GMT -6)   
     I had some problems post surgery also.  It takes awhile for things to simmer down.  I have a permanent ileo, so only one surgery.  What is your diet like?  Gatorade, for some reason or other, did a number on me.  It gave me terrible diarrhea and then I started vomiting.  This was about six weeks post op.  I wound up back in the hospital with dehydration and low electolytes.  That is the reason I drank the darn stuff, because it was to replenish electrolytes rolleyes .
     I still have noises, but they only come at night when watching tv.  It's like the stoma wants attention or something.
     I don't take any probiotics.  I had my fill of them when I suffered with UP (proctitis) and they didn't seem to help me at all.  But others take them, so guess they are ok.  I just take daily vitamins and calcium with D.

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 9/29/2011 9:31 PM (GMT -6)   
I was hospitalized for almost 2 months, was 40 pounds thinner, wasn't supposed to have an ileostomy. I was so weak when I came home, and I didn't know what I was doing, was so unaware of everything medically. But I did listen to my body, listened to what it needed and I didn't have any complications once home. I did drink alot of water, was very thirsty. I did drink 1 gatorade G2 a day. Snacked on salty pretzels and chips, didn't have any cravings for coffee or sweets for about a month (and I love coffee and have a sweet tooth), watched what I ate-high protein because of the weight loss, drank green tea during day and camomile at night to sleep, tried to get good night sleep, and pushed myself further in my walking routine. My stoma was really loud in the beginning, even waking me from sleep. After a month, I was able to eat anything, felt great, and went on a cooking spree, I was cooking for hours a day because I got my appetite back. My fridge looked like a restaurant, my kids were shocked at my behavior, but was so happy to eat normally and have an appetite again, and happy to be alive. Hope you feel better, it will take time to get your body to adjust, you just had a major organ removed....

lild
Regular Member


Date Joined May 2010
Total Posts : 227
   Posted 9/29/2011 11:50 PM (GMT -6)   
Thanks everyone! I know I'll get thru this.
29/F married Dx w/ UC 7/09 (Symt 3/09) 6/10 dx w/ pancolitis Remicade since 7/10; Pred. at times for almost over a year
VSL #3 DS, Serovera Aloe, Mesalamine, oral and enema.
Tried to tackle SCD Diet! Even modified
In the end all all meds failed. Colon beyond saving :(
Colon removed Aug 22, 2011.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, June 23, 2018 4:43 AM (GMT -6)
There are a total of 2,974,453 posts in 326,177 threads.
View Active Threads


Who's Online
This forum has 161281 registered members. Please welcome our newest member, Paw Paw.
289 Guest(s), 1 Registered Member(s) are currently online.  Details
sandyfeet