Mysticobra,

When my UC got bad I lost a total of over 100 lbs, and didnt begin to gain weight back until after my takedown surgery. It's been almost eight years since then (2006) and I can sympathize that it took a long time to get back to feeling anywhere near normal. I have a desk job so, not physically demanding, but lots of stress. I'm concerend about your level of pain. One thing that it has taken me along time to get adjusted is the right diet. Your pain could be related to what you are eating. I would hope months after surgery you would not have pain to the extent you are, unless something else is still going on leading to inflammation, etc. If you are not now, but can, I 'd try eliminating the fiber, and go to a low residue diet. Get enough fluids but watch the salt. Getting back to your old stamina levels they call 'work hardening' and its different for everyone. I came back partime for a few weeks after both my surgeries, but it still is s low road. I'm mostly feeling good now, but still have thos occasional pouch problems like most do (not a bad a some). Hang in there, but if you have tried making changes on your own and dont feel yourself getting better I would seek help from doctor, dietician, and your local CCFA Support groups are a great resource to get some personal help and advice.

Take care,

Mark

If you're still taking opiates, likely not in withdraw, especially since you tapered the Fentanyl patch.

I believe any good doc should do a smash of labs, looking at iron and iron stores and total B12. Pouch patients can be deficient on those especially. Also, just as an FYI, my B12 was way over normal at a point, and my GI said that can be a skewed result indicating poor absorption of B12... Don't ask me details of how, I didn't ask... But I'm on B12 shots, and they do help. Also, my iron stores are always low end, so that's something to think about, too.

Is your lack of sleep due to using the bathroom frequently? If so, there are ways to manage higher output. I've never needed it, but some swear by Metamucil, Immodium, and/or Lomotil. Also worth getting checked to rule out pouchitis. If that's the case, antibiotic treatment may be advised and help.

Nine months after my takedown, I'd gained my weight back, and was in full time nursing school and working 24 hours a week (I was also 20 years old!). I'd say really get in with a good doctor, GI or otherwise. A family physician can totally order labs and get started ruling some things out.

Thanks all.
I do take lomitil.
I do get up alot to use the bathroom.
Both number one and two.
Seeing how we have to drink so much I find I get up more to pee than have a bowel movement.
I had all the blood tests done and the only thing that was low was testosterone. Just gonna leave that be I be I will get the number up as my weight goes up.
No infections in the pouch..like I said and I just came back from my family dr and she gave me a script for lunesta...I just want sleep so bad.
I tried Metamucil and that flat out gave me diarrhea.
I am assuming as time everything thing else involved with this surgery it will he slow to get it back and I just have to keep pushing my self.
But I need to get the sleep first. I am so sleepy all day because 3 and a half to four hours a night for 4-5 months plus...never saw the beginning of this...is taking it's toll on me.

I'm sorry to hear you are still having trouble. Tomorrow is 12 weeks since my takedown and I am also getting lots of pain so am on hydrocodone and Tramadol. I also cannot sleep. What kinds of pain are you having? I get severe cramping and sharp pains through my gastrotract and all through my female areas so bad that I sometimes can't take it and just cry. I also have a very difficult time making it through 8 hours of work and I have a desk job! I also didn't have this constant pain/trouble when I had UC.

My dr is now thinking that there isn't room on my insides for my pouch to expand properly so when it's filling, it causes pain. If this is the case, I will have to have a hysterectomy.

I am only going to the restroom between 6-8 times per day but because of the pain, I don't eat much.

I don't really have any advice - just wanted you to know that I'm in the same boat.

I hope you get resolution soon.

Sincerely,
Wendy

It took me a full year to regain my stamina. I was really sick for about 6 months before surgery, plus I had to come off of high dose prednisone post op. In addition, I had complications that were serious. Anemia, infections, etc. These things take their toll. My trick for night time toilet visits is to just have a dim night light in the bathroom and I don't turn on the overhead light. So, I don't get fully awakened and fall right back to sleep.

If you are waking to urinate, you may need to cut back on fluids later in the day. But, if you are 40+, it may just come with the territory...welcome to middle age!

Jan

Hello Jan.
I know it will take awhile to get it all back but I figured I would be in better shape by now.
I have a perfectly healthy pouch that's what is so confusing to me.
I have my room blacked out...bathroom has a night light.
I have had no infections...thought I did one time but it wasn't.
I did start cutting back on fluids early but I think my bladder is the size of a pea....and yes I am way past 40....58 is way past.
I wish I were 40...haha.

Yes Try asking the doctor about lomotil it is prescription it is stronger than Imodium. It slows down your issues just be careful not to

take to much but the Dr should explain that to you. It helped. I still take one in the morning with my antibiotic because of pouchitis. I think the tiredness always stays with you It has been 4 years since my j-pouch surgery and I still can't gain weight but at least I do feel better you get to know what you can and what you can't Everyone is different hope this helps Grace

One thing I have to comment on and it could be true.
I was on remicade....humira...and another bio drug the name escapes me.
Now my family dr mentioned that not being on humira now may be bringing this on.
I am not sure but maybe it would be an idea to try humira and see if that has any effect. I was on the bio drugs for many many years.
Just a thought.
P S I take four lomotil a day.

I doubt any doctor would put you back on Humira for the fatigue. It would be completely out of your system by now. Perhaps there is an adjustment still going on, but it is not like prednisone, where you might need to resume it.

Maybe time to get the prostate checked? BPH could be adding to your grief...

Jan

Im sorry youre going through this. Im 2 yrs with jpouch and I feel the same way. maybe youre low in iron and b12.

Thanks all.
Prednisone withdrawals are terrible.
I have not been on that for over a year.
My iron levessels are high...as for b 12 I don't even know.
They did every blood test in the book about two months ago and the only thing that showed low was as I said before is testosterone.
Jan...question. I do take opiates but as prescribed.
I know you build a tolerance to it but can withdrawals happen even when taking them as prescribed and your body is used to the dose? I don't know if I explained that correctly.
What is bph?
I was on prostrate meds before surgery but taken off all my meds after my colon was removed. Do you know why she would have done that?
I was on blood pressure meds too.

I'm on our hospital's pain committee.

Basically, the more opiates you take, the more you will require as you build a tolerance. But you said you tapered your Fentanyl, and only take the others "as needed."

That being said, opiates should not be causing your issues, unless you are taking the pills in ways not as prescribed. It would be highly unlikely that they are causing you withdraw issues if tapering appropriately, and taking them as prescribed.

If you took meds for your prostate prior to GI surgery, the J pouch in no way "fixes" a urological issue like prostate issues.

Also, generally hypertension doesn't just "go away," and I don't know why they'd just cut you off from prostate and BP meds after surgery. Makes no sense. It bears being monitored, at least.

I still say to ask them what your B12 was. Remember, my GI said we can be deficient even with HIGH B12 numbers. It's worth asking about: it's just a vitamin. And an easy fix, if that's the problem. And low B12 makes you feel terrible.

Also, iron levels are one thing, but make sure to look at iron stores... Ferritin, transferrin, total iron binding capacity. They all together give you a picture of anemia.

Thank you.
I will be sure to call Monday and ask why I was taken off the prostrate and BP meds.
I am taking the opiates as prescribed but just wondered if that could happen.
I felt withdrawals from the patch.
It was a 25 patch and I just stopped.
Thank you for the info.
I am going to write it down (I'm old and if I don't write it down I forget) and I have phone calls to make on monday.
As for iron levels they have always been high with me.
Thank you very much.

The fentanyl is out of your system after two weeks, so whatever withdrawals you had, they are over. Returning to work the same time you drop one of your opiate meds is a lot of stress at one time. If you are feeling totally whipped after work, you may have tried too much at one time. Maybe you can cut your hours for a few weeks until you are up to speed. Especially with an active job, you may need to ease into it. You can ask your doctor for a restriction on activity or hours.

It is not uncommon for folks to need extra time to get back into the swing of full time work.

BPH is benign prostatic hypertrophy, common in men middle age and older. Definitely ask about resuming your meds. You may not need the same doses (or any of the BP meds) with your weight loss, but check into it.

Jan

Thank you Jan.
You have very sound advice.
As for work....it's either be there or not. I will just have to pace myself a bit slower. That is hard for me to do. I do work hard to pass the time quickly but I will slow up some. It's a union shop so that says enough.
I am totally whipped when I get home from work. Going to fast I guess.
I work on a loading dock for a freight line.
I will contact my dr and I know she will resume my two meds. She did say my BP was a bit high. ..top number was 140 can't remember the bottom number was probably not much better.
Thank you Jan. I appreciate your advice and help.
Richard.

Maybe I missed it in the thread, but some folks get awfully fatigued by opiates. The issue isn't whether they're being taken as prescribed, just how your body reacts. If you're taking the Norco and/or Tramadol every day, maybe side effects are contributing to this. I don't have a great alternate pain solution, though.

Hi Mystic,
I am a 35yr K pouch veteran and still don't get it right all of the time.
I had some very bad years of multiple pouch surgeries that really threw my body off the edge.
It took a long time...very long to get anything that resembled a normal life and energy level back (still not there yet...read some of my posts on fatigue).
I have found certain truths. It takes up to 6 months, once you get back to work, to be able to make it through the day without wanting to sit down on the floor and cry from fatigue. You might need naps (I snooze instead of eating lunch...just pretend that they are power naps...)
I have a very physical lifestyle, I teach B schools and university classes around the city (take public transportation: 1+ hr each way + 2-4 changes & tons of walking)...it is exhausting...and I am not a "sit behind the desk & make'em work" kind of teacher...I up in their faces all class long...bopping and jumping around to keep them interested and awake, not an easy job. Long days too (9hrs of classes on Tues and Weds + 1/2 days the rest of the week)...In the beginning I would practically crawl home in tears...checked blood levels, full cardiac & thyroid work-ups etc...most of my numbers are just sub clinical but not 'dangerously low'. So no help.
Bottom line...the only thing that I found that helped me was diet.
Upped my protein intake, ate snacks (chicken breast or chicken sausage or chunks of cheese) in both A.M & P.M and traded out the sugary junk food for fruits or diet soda ( sorry, the only thing that seems to keep me from crashing and burning at 4pm) My diet is basically protein meals with some veggies (salad or cooked greens, not starches...they exhaust me and put me to sleep...french fries just kill me! They are like sleeping pills). If I eat a carb meal or bread/sweets at lunch I am practically comatose for the rest of the P.M...
I am on Lamaline & IBprophene (an opiate) for back pain...those meds make you sleepy, add chronic dehydration from liquid output, sub-clinical iron & thyroid levels and it is a wonder that I can still walk & talk...
Do not expect too much too soon. Yes, it is the sleep loss and interrupted cycle, the opiates, weight loss, dehydration etc...but it really boils down to a huge adjustment period for your body and system and it takes time...some stuff does come back (like weight! Arghhh!) and others don't ( I still grab a nap whenever I can) but you learn to live your life around it, be generous to yourself and tweak you body until you find the perfect doses of diet, exercise ( I am a work-out junkie) and meds.
Most if not all will start to balance out but it takes a lot of time.
Sharon

Hello Sharon.
I have read some of your posts.
You are a strong determined woman. I know i may get some backlash but I think women go through this stronger than men.
I had some idea what to expect before I got my pouch but no one....not one person explained the long term. Just that it may take 18 months to get back to normal. Ha. I don't think normal will ever return. Not that I don't think I will get through this...I will. I am determined to get through it and I will.
My life...body is changed forever. It is better than the UC I dealt with for 18 years...those are the years I knew I had it. I think looking back I had it all my life but didn't really rear it's ugly head until I was 40.
I am still going through the process of what foods I can and cannot eat. It's hard sometimes cause you will eat like a hot dog and the next day just have a terrible day and you think was that the hot dog that did that? I have eaten that before and I had no reaction. Actually that just happened.
The food part and all of it will come in time. I know now it is going to take at least two years to maybe get some kind of normal.
The thing is right now I get teased with a perfect problem free day and the next day will be totally hell.
Thank you Sharon...you gave me some good advice.
I have to learn my limits now. I have to remember and tell myself I do have limits now and adjust. I just think sometimes I can just go head first into everything but I have to stop thinking that way. This is a new me.
The old me is gone....and that is a hard thing to keep in mind for myself.
I will plug on. Just limit myself.
Thanks again.
Richard.

I am now 43, and I can say that my forties are bringing a plethora of issues, even minusing out the pouch, though in her twenties, my pouch has become more unpredictable and stubborn.

I tire much easier now than I did, the changes are palpable and obvious in my 40's. I've found out a few things that I need (B12 shots), that really help, but I do fatigue easier, the older I get.

But really, it did take me two years for the dust to settle, if you will. Two years after things were reconnected and functioning, things were pretty good to where I knew what I was going to be dealing with. I was almost back to a new normal when I returned to nursing school 8 months after my initial surgery/4 months post takedown, but improvements definitely continued after that time. And again, I was a 20 year old vs an older person... I just healed faster then, and I know that.


Scott brings up a good point, too. A normal side effect of opiates IS feeling tired. How bad is your pain? You might try asking your doctor if you can begin weaning off meds. I know everyone is different, and you may use them for other things, too, and truly need them, but at discharge after the J pouch/loop, I was on zero pain meds, and when I was reconnected, I was never given any opiates (though I do know I have a high pain tolerance, overall; every surgery I have had, I get off opiates very fast, because they make me feel blah and make me spacey).

Just some thoughts.

I know being older it takes longer to heal but another thing about being older is being set in your ways and being stubborn in changing your ways.
So sometimes us older folks have to learn the hard way.

Scott,
With or without the pouch, the disease etc you are going to get older (I hope!) and have to deal with a whole new set of health issues like, well...everything!
It is natural to resist change but it is coming whether you like it or not so the best rule for me is to expect that there is no normal and be pleasantly surprised if you have a good day (food diaries actually do help but you have to add in the times that you eat the foods, what you ate, drank or did while eating them (like how much water, took the meds before or after, went jogging....)and what kind of mixes you made ( I personally have a big problem mixing carbs with proteins...just does not digest well in me but you have a J not a K pouch so it will be different)).
Yes, a lot of us 'girls' are made of stronger stuff ( thank you Mother Nature) but it does not mean that you cannot learn how to handle things better. There are NO RULES...just do things the best way that you can, ask for help if and when you need it and keep a running log of what works for you.
Opiates just kill me...I am tired enough without them so that when I do take them I plan to sleep a lot. Switching them off for other meds is or physio is a good way to fight the lethargy.
And keep physical...walk, stretch, swim...doesn't matter but keep the rest of your body healthy to support you and your pouch ( does wonders for the brain too)
Sharon

If you are not eating right you will be exhausted. If you are going to the bathroom that much and not putting the right amount of fluid or nutrition back in your body then you will be exhausted. If you aren't getting the right amount of sleep then you will be exhausted. If you've lost a lot of weight then you will be exhausted. If you are experiencing opiate withdrawals then you will be exhausted. Yes you can start to experience opiate withdrawals while you are still taking them I know from experience. If you have been on them for a long period of time you will build a tolerance and as you build a tolerance and you usually take your oxy every 8 hours after a while your tolerance will be so high that that same dose will not last you every 8 hours. If you are experiencing all these and working a tiring 8 hours you will be exhausted. If you are experiencing a lot of stress which in your situation how could you not then that will also contribute to your exhaustion. I was in your shoes. My suggestion is to find a hematologists and have them run as many lab tests as they possibly can. You could also request a B12 shot from your primary dr Im sure they wont give you a problem with getting one it couldn't do any harm. I had to go for iron infusions because my levels were low for a while and I was soo tired all the time. I hope things get better for you and you get everything figured out. Good Luck.