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V
Hi all,
I'm new to the group but not new to the jpouch. I had my surgeries back in 1975 for UC and am now 51. I'm at home today recovering from Severe dehydration and a 4 day hospital stay...my kidneys had shut down and no urination for 2 days. Am doing much better but am finding myself a bit depressed for a couple of reasons. I get so frustrated with these bouts when the stupid stomach flu makes the rounds...its almost like a waiting game to see if I'll get it. The second is that although I've been married for 15 years and my spouse knew all about this when we married, each time it happens its like a new revelation...first he gets mad because we are having to make a trip to ER, then he still gets it all wrong...telling them i have a jpouch and that i have a large colon....ARRRRGGGHHH. This last virus hit me when we were on our last night in CA visiting his family. We had to call paramedics at 3 in the morning and go for an IV...they gave me an inadequate amount and i ended up vomiting and more diahreah...the airlines wouldn't let me board to go home the next day and we had to spend another night hoping the vomiting would stop long enough to get me home. We were able to fly home the next day and instead of getting me to the ER where my doctor practices, he told my folks who had driven over to pick up my daughter that i didn't need to go and could wait to see doctor the next day. Needless to say i looked AWFUL...sunken eyes, no color around my mouth, could hardly breathe. When my doctor saw me next day he didn't even check....immediately ordered me admitted and we had to do PICC line because my veins kept collapsing. I got to come home earlier this week and I feel 100% better but i can't stop crying. Is there anything any of you do on a daily basis, i.e. Boost, etc that could at least help with daily energy and keeping myself better hydrated? I try to cook and eat at home but my spouse wants to eat out all the time and I simply can't. Has anyone else had to deal with this? Any advice is really really appreciated.

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kathy smithkathy smithMember
I'm so sorry you're going through all this. I wonder if it would you if you saw a therapist with expertise on chronic illness. Your husband may or may not elect to go but it seems like you need a sounding board to vent your frustrations. Of course, venting here is always good too.

Regarding hydration - I drink Vitalyte everyday. I don't have a problem with dehydration but I still drink it because I hate the 'flavor' of our water. Plain water shouldn't have a flavor IMO. I first tried Vitalyte (then called Gookinaid) in the early 1980's on a backpacking trip in the Tetons. I just kept moving slower and slower and slower. I finally stopped, mixed a quart of Vitalyte, drank it, and it was like someone had wound up the energizer bunny. I could not believe the difference. And it was instant difference.

However, if you get a stomach bug and you're throwing up and unable to keep anything down, I'm not sure anything could help. In that case it's probably good to get to the ER and on IV liquids before your veins collapse.

Welcome to the site!

kathy Big Grin
kathy smith
V ValBMember
Thank you Kathy! It occurred to me later that I failed to mention that with the exceptions of these bouts of stomach flu, I have really had great health. Sometimes its hard to remind myself that I'm not like everyone else and can't do it all...I'm lucky in that i have really supportive family and my Mom and Dad are still able to help out when needed. My daughter is an angel. I am going to Sams now to see what they have for Boost and also see about the Vitalyte and get it ordered. Am looking forward to trying it out. The Gatorade just seems to make things worse every time i drink it so it has been permanently scratched off my list. Thanks for the support.
Val Smiler
V
skn69skn69Member
Hi Val,
I feel for you, the stomach flu is miserable for anyone but for us it is totally life threaten sometimes...I am usually ok for the dehydration except for those rare exceptions when I get hit hard..I usually run for the Gravol (dramamine or any other motion sickness med...I start out with kchewable kid strength and then work up my way up to a stronger dose if needed...that helps a lot with the throwing up and slows my whole system down...I am a big fan of homemade lemonaide that I make out of freshly squeezed lemons+ fresh chopped, mint leaves real or fake sugar and tons of water and ice...it seems to do the trick for me...
As for the rest, I am no one to give marriage advice...Like you I had my k pouch very early (1979) and met my husband in 98...he knew about my pouch but I thought that he understood the seriousness of it and the eventual complications...Not.
He couldn't explain it to a doctor if my life depended on it, refused to carry an info card on him with the details and every time that I get sick or have a pouch problem he runs and hides his head in the sand or worse says the stupidest things to the wrong people...
My hubby is made of teflon...nothing sticks to him when it comes to my medical problems...until recently...when he had a cardiac accident and suddenly he is all worried about taking his meds at the right time, not forgetting them or their names and of course if something should happen to him...who is going to speak for him????? He wants me to carry a card with all of the info, details, meds etc and is offering me to have him carry one on me and my medical condition! Sometimes it helps for them to feel the fear and pain that we are feeling to be able to better understand our stress and reality!
Who would have thought that it would take a heart attack for my hubby to understand me!
Empathy is not always natural to everyone and maybe they really do need to be hit on the head with a 2x4 to understand that it hurts!
Hope that yours figures this one out sooner than mine did!
Sharon
skn69
V ValBMember
God bless you...thank you....sometimes its just knowing you aren't the only one dealing with "one" like this. Am going to invest in the gravol and keep it handy....also talked to my dr. today and he's put me on Ensure Clear (permanently) to help. Also ordered the Vitalyte (he agreed with this too) that Kathy suggested and will do a daily slug. He said it really all boils down to trial and error as to what works so am going to try each out and see what happens...many thanks.
V
kathy smithkathy smithMember
Yes, I like the citrus. My 91 year old perfectly healthy, coloned mother also drinks it. It helps keep her healthy during winter and prevents leg cramps at night. I like the flavor of citrus but I also like that it has no added color. But even in the flavors that have color it is very muted so there isn't much color additive.

I also suggest trying all the flavors to see which you like.

I'm glad your health is very fine!

kathy Big Grin
kathy smith
Txgal58Txgal58Member
Well I can completely sympathize! I have been hospitalized 5 times since Jan 2012 for dehydration. Just got out last Thursday after an 8-day stay. Had to go by ambulance because I was so weak I couldn't even get out of bed. They had to take me to the closest hospital instead of where I wanted to go because my blood pressure was so low!
Long story short the 1st hospital was ready to do surgery in two hours due to what they believed was a perforated bowel from the CT scan. I was able to get transferred to Baylor Dallas and thru careful monitoring, avoided surgery this time! They believe I have a partial bowel obstruction. My kidney fuction came back but it was so bad I might have perm damaged them. I got that bad in two days!
I had been adding two or three Boost to my diet but it didn't help in this case. I have an appt to see a nutritionist this week plus one of my docs is going to do reg bloodwork to check on my potassium, magnesium and such. I have also been approved by insurance for hydration therapy. Not sure how that will work yet.
It's VERY frustrating!
Txgal58
V ValBMember
Txgal...I too was at Baylor Dallas when I was sick this last time...now I won't go anywhere else. It turns out i picked up the norovirus while we were in california and it hit me hard and fast. My doctor practices out of Baylor Dallas and I have determined I won't go anywhere else. It is really frustrating when other hospitals don't know what to do or determine its something else that its not. Am on daily Ensure Clear (no dairy in it) and i love it (the blueberry pomegranate one). I also do 32 ounces of the Vitalyte each day throughout the day to keep hydrated...i do have to say I feel better since I started these. If you need a new doc or what my doc's name...ping me and I'll send it to you. He and his group are wonderful. Hang in there!
V
Txgal58Txgal58Member
Hey Val! If you don't mind my asking, who is your Dr.? I had my j-pouch surgeries there in 1997. R D Dignan is my Dr. He really helped me out this last time by getting me a room there; I def would have undergone surgery at the other hospital! I have also been to Mansfield Methodist a couple of times. Nice hospital but no one knows about our special makeup like Baylor Dallas does. I too hate trying to explain it to people.
Txgal58
V ValBMember
Greetings Txgal...my doctor is Robert Jacobson. He is part of the North Texas Colon and Rectal group: http://www.northtexascolonandrectal.com/ I can't say enough about him and his whole group. They are wonderful. He didn't do my surgery (it was 36 years ago) but he takes care of me now and has for several years. When I got sick this last time (about 3 weeks ago) he was out of town but his partner, Dr. Tulanon, took great care of me. I had a fissure occur about 13 years ago and started out with a general surgeon in Arlington who kept putting me on antibiotics and putting in tubes to drain it but it wasn't getting any better. My pcp referred me to Dr. Jacobson and by simply manually keeping it open, it was able to drain and eventually heal itself. Each year when I get my flex now for my pouch he checks the area to make sure it hasn't recurred, which it hasn't. I do believe he is accepting new patients. Keep in touch...I want to know how you are doing.
V
Txgal58Txgal58Member
Yes Val! I know Dr Jacobson and I am pretty sure I have met Dr Tulanon. I interviewed three surgeons before I had my J pouch surgery; Dr Jacobson was one of the three. To be honest, the main reason I chose Dr Dignan was because at that time he was the Chief of Colon and Rectal Surgery for Baylor, and when I interviewed him, he listened to me and took time for all my questions. I probably just caught Dr Jacobson on a busy day, but he kept taking phone calls during my appointment. It was that fine of a choice. I have heard great things about him! I did see him in the hallway last week at the hospital!
If I had stayed at the first hospital last week, a general surgeon is who would have operated on me. I wanted no part of that! To his credit my sister told me she heard him tell the nurses to do what ever they could to get me to Baylor ASAP.
Txgal58
V ValBMember
Awesome! I think truly that we are both really lucky...especially with Baylor Dallas...bummer on the phone calls with Dr. Thankfully I haven't had that experience with him. Am so grateful for Baylor Dallas and for my doctor. I actually have my mom using him now and he is going to take on my daughter as well (she has a spastic colon) so he gets all 3 of us Smiler Someday we will have to share horror stories of other hospitals in the area and how they wanted to treat us when we went there...MCArlington was convinced I had a tumor...snicker, it was my jpouch. They kept me for 3 days and the doctor in charge wouldn't contact Dr. J. I am convinced after this last bout of virus that I'm going to carry with me at all times what should be done if I get sick...where to take me and whom to call and what to get going till my doctor tells them otherwise...seriously with as many of us as there are you'd think they would at least have some idea...sigh...chat soon!
V
Txgal58Txgal58Member
Val, wanted to give you an update. I had some blood work done 1 week after I got out of the hospital. The nephrologist who saw me in Baylor ordered it and sent me the results. Basically I was already slightly "dry" as he put it. Pretty much in spite of every thing I was doing all my numbers, except potassium, were barely above the low end of normal. Usually just 1 or 2 points. He told me if I didn't drink at least 64 oz. of Gatorade type fluid every day, I was looking as hydration therapy 2-3 times per week! I went to my 1st hydration therapy session last Tuesday. It did make me feel better! The down side is it will cost me a $35 copayment every time I go. I can't afford more than once a week!
Txgal58
tammykathleentammykathleenMember
Hello,

I have been doing in-hospital hydration sessions since 4 months after having my surgery, which was 6 years ago. I have a standing order. Without a colon, there is only so much liquid that your body can absorb.

Perhaps they can give you more hydration bags in one setting so you can cut down to one session, finance wise? That's what I finally had to do due to the cost. Instead of having 1 bag, I now have 2 bags at a sitting.
tammykathleen
Txgal58Txgal58Member
Now why didn't I think of that! I guess initially it might have been because we didn't know how long it would take to do one, much less two. The first time took 1 3/4 hours, the second, about 40 minutes! The nurse found a vein on the back of my forearm! Lol! She said it was big enough to put a pencil in!

Do you get anything more than a saline IV? I was disappointed to find out while at my last hydration session, from my nephrologist office, the bloodwork from the day before showed I was low on potassium. I've been taking a potassium phosphate powder just like he ordered. I need to see if he wants to add it to my IV possibly.

I just wish this were something I could manage myself. For 13 years after my surgery things went fine. This last 16 months have just been awful!
Txgal58

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