How long should it take???

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

christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 1/31/2010 3:49 PM (GMT -6)   
Hi everyone! As most of you know my husband had is surgery (ileostomy/j-pouch) done on Jan. 11th. I was just curious if anyone knows how long it should take for him to start feeling and looking a bit better, as well as, how long should he have liquid bowel movements? I have a call into our ostomy nurse; however, it's been almost 3 weeks now, and he still looks terrible. He's now lost 35 lbs, he weighed 200 lbs when he went into surgery, and now weighs a whopping 165 lbs. His bowel movements in his bag are straight liquid, like they gush out when he empties his bag, and I think I remember our nurse saying that they would thicken up. If that makes sense. It just doesn't seem like he's improving any, and I can tell he doesn't feel well. It really doesn't help that he has a cold on top of it all, but I was just curious. It's really hard to see your loved one go through this, so I'm looking for any advice that can be offered. Thank you and God Bless!
 
Alaina


Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
 
 
 
Current Meds:
Levothyroxine (.88 mg)
Sulfasalizine
Prednisone..when all else fails!! :)
 
 
 
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 1/31/2010 4:53 PM (GMT -6)   
has he had bloodwork since he's been home to make sure his electrolytes are ok and everything? Dehydration has been an issue for me since my output is so frequent and liquid, too. I have already had to go back to get IV fluids because i was so dehydrated. I have home nurses taking blood every week now because my electrolytes were also a problem from that. My surgeon says to just keep drinking gatorade and pedialyte and things like that. He actually said to not even bother with plain water. I've lost 26 pounds and still have a hard time eating very much. They keep telling me it will eventually thicken up some but it's always an issue with ileostomies
Did his surgeon suggest imodium or anything else to slow things down?
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma impossible to keep a bag on
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months with keeping a bag on until we can try the next surgery again

Post Edited (pam222) : 1/31/2010 3:57:11 PM (GMT-7)


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 1/31/2010 5:33 PM (GMT -6)   
Nope, nothing. We live in a somewhat small town, so our surgeon, in his career, has only done about a handful of these surgeries. We haven't spoken with him about it yet, but I plan to on Monday. My husband does do a pretty good job of staying hydrated, but I'll make sure he keeps drinking gatorade and those sort of things. Thanks for the suggestions! ;) And no, he hasn't had any blood work done since he's been out. Maybe I'll ask about that! His next appointment is not for another 3 months, but the doc said to call anytime. Thanks again!

Alaina
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
 
 
 
Current Meds:
Levothyroxine (.88 mg)
Sulfasalizine
Prednisone..when all else fails!! :)
 
 
 
 


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 1/31/2010 5:56 PM (GMT -6)   
Alaina - Sorry in advance for the long post. I seem to have a bad habit of brain dumping when I respond.

I don't know how encouraging this will be, but I am a 3 stepper and I remember that after my 1st surgery while I felt functional after 4 weeks I still had serious pain riding a car and wasn't very active other than my daily walks on the treadmill (1MPH for 15 min was an accomplishment as was a shopping trip to the grocery store). I didn't eat a whole lot either so it was difficult to get calories in. The first week it would take me a whole day to eat a sandwich. I cut it in quarters and ate a quarter at a time. I fell more in love with cheese and crackers, cheese curds, and cheese sticks than I had in the past. I'm now almost 4 weeks after step 2 and I am having a much better time of it this time from a pain aspect but I also had a spinal shot rather than just general anesthesia for surgery. I was also much healthier going into this surgery - I lost 20lbs before surgery #1 and was very weak and sick. I lost another 10lbs during surgery and after because I couldn't eat much. However, the difference between 4 weeks and 6 weeks was amazing so make sure that he's eating and measure his progress in weeks - not days.

I have a loop ileo this time (Jan 4 surgery#2) and my output is very liquid compared to my end ileo - similar to your husband's it gushes out when I empty but there are solids with the liquids so I know that I don't have a partial blockage. However, I have not taken many (ok - any) steps to try to change this as it doesn't bother me as long as I stay hydrated. I know that in the past eating mashed potatoes/mashed sweet potatoes or applesauce made a huge difference in thickening up my output. Pumpkin pie and other squashes also did wonderful thickening things for me (gotta love the holidays). I wore a short bag (7") with my end ileo so I was used to getting up 2-3 times at night to empty until about 8 weeks out when I started only getting up once and getting 4-6 hours of straight sleep which felt great. Since this was fewer than I had gotten up with UC it was a relief and I did learn to go back to sleep quickly and also napped during the day until I went back to work. After awhile I was getting up only once to empty. I am a person that eats even right before bed. I always have and probably always will. I tend to snack all day long rather than eating big meals which I think helps me absorb more calories. I'm going to get up no matter what so I might as well get up because I need to empty rather than because I'm hungry. Plus I think that if all you do is drink before bed then your output will be very liquid as there's nothing to absorb the liquid or slow things down. I have found that while soups are soothing and comforting and many are easily digested - they go right through me if they don't have something solid like chicken in them. I have learned that trying to find a juice that doesn't have apple or grape juice as a main ingredient is difficult. My nurses told me that I could take a teaspoon of metamucil in 4oz of water in the morning and at night with nothing else to thicken things up (don't follow the directions on the container) or take Imodium to help slow things down which will allow for more time for absorption. My booklet gives me instructions on how to take them and emphasizes that you should not take them as listed on the box.

As I'm sure you know, your husband's body is still learning to absorb water, sodium, b vitamins, etc. so make sure that he is getting enough salt and supplements if needed or he will dehydrate which will add to his tiredness. I had to take iron pills because I was still very anemic after surgery #1 which did help with my energy level. G2 has been my savior and I drink it, water, and tea (ok - I sip them - per the nurses instructions) all day long. My geeky sister figured out that I need to sip 2oz every 15 min that I'm awake to get my required liquids for the day in me. I eat a lot of pasta, sandwiches, cheese, potatoes, etc. which helped me to start gaining weight once I got used to eating again after having next to nothing for days while in the hospital. I gained 25lbs in 3 months (or less). Once I could eat I ate everything in sight (bye bye UC) and the weight came back on easily - too easily. I do sleep in a half-sitting up position for the first several weeks after surgery and then I begin to sleep on my side. As a stomach sleeper it's been difficult but I've adjusted. Many people sleep in a recliner at first because it is much more comfortable. I think that it may have something to do with not pulling on your abdomen like lying flat does. Summerstorm has an absorbing disk that she adds to her bags - they might help him to sleep longer as the bag won't fill up as quickly.

Check with your doc to see what he can take for his cold. I got one after surgery #1 and was allowed to take Sudafed (the real stuff). Steamy showers were also nice to clear me up but I had to be careful that I didn't overheat and get dizzy. Also - make sure he has his tummy pillow as I'm sure the pain from blowing his nose and coughing is still painful. He needs to eat to get calories to gain weight so even if he snacks on mashed potatoes or another thickening food it will help as does eating protein (for healing).

Good luck. I hope that things will start getting better for him and he starts to eat, get sleep, gain weight, and get rid of his cold. I'm can only imagine how horrible it is to watch him go through this but it does get better and he will be a healthier person without his colon.
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/31/2010 6:07 PM (GMT -6)   
what is he eating?
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-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/31/2010 7:29 PM (GMT -6)   
Alaina~my first question is summerstorms...what does he eat during the day? the BRAT would help and mashed potatoes (instant work best) are great at thickening the output even when the patient doesn't feel like eating.

Be careful with Gatorade and other sports drinks...while they have electrolytes, they contain a lot of sugar which causes D in people with ileostomies.

Since your Doc didn't mention to take fiber or imodium...those might be a good start. I was instructed to use Metamucil until my eating was on tract and I could slow down my output. Always start with a low dose and work into the amount that works best for your hubby...we don't usually have to take the 'normal' doses but it is important to go slow...imodium before a meal (about 30 min) will help the output and again it's trial and error since we are all different.

My guess is he's dehydrated and probably doesn't feel much like eating...you can look up symptoms of dehydration on line...if it's really bad he should go to the ER and have some IV fluids...it will make a HUGE difference!

also, just as a precaution, he should have blood work to check for C-Diff...that way you can rule it out or treat it!

christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 2/1/2010 9:55 PM (GMT -6)   
God Bless you all! I truly appreciate your input! I actually spoke with his doc today, and he said imodium was great; however, he didn't instruct how much to do. We didn't follow the beginning instructions on the back as he has straight liquid pretty much coming out anyhow, so we just did 15 mL to get him started. I'm praying this will help. He's eating I think pretty well, the nurse has instructed that he get plenty of protein, as I know he's been leaning more towards carbs as they are more gentle on the 'going down' process. He still gets a somewhat bloated feeling after he eats, depending on the meal. He's been drinking a ton, but it seems the more he drinks, the more things just go right through him. Especially when he drinks gatorade. He's been a trooper, and I'm learning you have to mearsure this in weeks, and not days, like someone previously mentioned! ;) So we're gonna give this immodium a try and see if it helps. I'm praying it does! Thank you all again!! You have all be sooo...comforting!

~Ducridr~ Thank you for the long note!!!! Truly appreciated everything you said! <3

Alaina


Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
 
 
 
Current Meds:
Levothyroxine (.88 mg)
Sulfasalizine
Prednisone..when all else fails!! :)
 
 
 
 

Post Edited (christianbcmom) : 2/1/2010 10:40:07 PM (GMT-7)


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 2/1/2010 11:50 PM (GMT -6)   
Also..Ducridr...

what booklet did they give you that tells you how to take care of all of this stuff? Like with the metamucil and the imodium? Our surgeon didn't give us anything as we live in a small town, and not many of these operations are performed...so I'm just curious...I'll try researching...thanks!

Alaina
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
 
 
 
Current Meds:
Levothyroxine (.88 mg)
Sulfasalizine
Prednisone..when all else fails!! :)
 
 
 
 


ducridr
Regular Member


Date Joined Apr 2008
Total Posts : 139
   Posted 2/2/2010 8:41 AM (GMT -6)   
Alaina - I got a big booklet on the whole procedure, what to expect, what not to eat, etc. I'll see if I can find it online and if not will scan in the essentials and em them to you.
Ducridr - 36 - female

Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.

J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 2/2/2010 3:27 PM (GMT -6)   
Hi, sorry to hear your husband is having a tough time right now, I use to take immodium when i first had my ileo and was taking 2 four times a day thats the maximium dosage i think ,its best to take 20 minutes before you eat anything hope your husband soon gets it sorted and gets well soon take care Bevx wink
Diagnosed with crohns at 13 now 43
Reversal of temp stoma Postponed till ???????
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 2/3/2010 8:37 PM (GMT -6)   
Thank you both. Actually, the doc put him on something I guess a little stronger than imodium, it's called Tincture of Opium. It's helped him tremendously, it's extremely expensive, which we weren't expecting, but it has helped him tremendously. He actually has started to feel better already, he even looks better, and he only just started taking it yesterday. So we shall see, he's supposed to go back to work next week, and it will only have been just 4 weeks I think. Crazy to me! I keep telling him not to over do it, but he's stubborn, so we shall see, but I appreciate everyone's thougts and advice! It means a lot to know there are others who go through the same thing as you! <3

Alaina
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
 
 
 
Current Meds:
Levothyroxine (.88 mg)
Sulfasalizine
Prednisone..when all else fails!! :)
 
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 23, 2017 12:13 AM (GMT -6)
There are a total of 2,885,882 posts in 316,652 threads.
View Active Threads


Who's Online
This forum has 157753 registered members. Please welcome our newest member, Gghjg0258.
308 Guest(s), 3 Registered Member(s) are currently online.  Details
RedLabel, CM., Traneboy


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer