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Hi All,

Sorry for the million whiny posts- you can tell I’m still out of work and have time on my hands.

I’m wondering how long it took you to get over the fatigue following takedown (assuming you experienced any)?

I’m just over a month with new pouch and feel completely wiped out, mentally and physically. It’s rather profound. I would lay around all day if I didn’t will myself to get up and walk around, go for a short walk, do some task, etc. Even preparing a meal, something I typically love doing, is exhausting. I had lots of complications between stage 2 and 3 (pelvic abscesses and SBOs) that kept me out of work and in and out of the hospital for past 7 months but I don’t believe infection is playing a role here (have a persistent presacral sinus but no abscess in imaging). Currently on cipro for pouchitis which has really helped. I’m also still 25 lbs below my fighting weight. Mildly anemic but iron ok so likely a bit of anemia of chronic disease. Nothing severe. B12 is fine. Thyroid normal. Actively addressing the mental aspects and invariable depression that comes with all of this.

So what gives? I feel like I’m not turning the corner like I did after stage 1 and that came with a 5 week hospitalization, severe blood loss, malnutrition, ileus, etc. I need to return to a very demanding job in 3 weeks which has me freaked out. I’m generally a healthy, fit, active person and I feel like I should be turning the corner on this. Feeling a little better every day. I always have infection in the back of my mind given my history and sinus tract but there is no current evidence of it.

Any tips? Yes I’m drinking plenty of water. How long did it take you?

P.S. Don’t worry, my long winded posts will disappear in a few weeks!

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You can posts as much as you want, do not hold back. After a few months you will start feeling better. I t took me a full year to get use to things. Hang in there hon and you will feel better soon

Fruit juices helped me a lot back then: lemonade, cranberry juice, etc.  Pedialyte I hear is great, although I have not tried that yet. Gatorade is excellent, there is even sugar free Gatorade.  Those gave me energy.

Thanks Lauren. I’m always worried when I don’t “turn the corner” like I expect to that something else is going on (e.g infection) given my history. I’m just trying to figure out if this is expected fatigue and how long it lasted others though I know experiences vary considerably depending on degree of illness. I’m just going to try to focus on eating, sleeping, and conditioning and hope I feel a shift. Right now I feel like a leaden skeleton.  

@Pouch2021 posted:

Thanks Lauren. I’m always worried when I don’t “turn the corner” like I expect to that something else is going on (e.g infection) given my history. I’m just trying to figure out if this is expected fatigue and how long it lasted others though I know experiences vary considerably depending on degree of illness. I’m just going to try to focus on eating, sleeping, and conditioning and hope I feel a shift. Right now I feel like a leaden skeleton.  

Your welcome! I love your Screen name And yeah do not worry, you are still in the healing stage at this point, things just take time to heal. I know its hard but you will get through this. Eating and sleeping are good healing habits, so that is pretty smart to do as you mentioned try to move around when you can, I would just say little by little each day.

And keeping positive thoughts will help you heal too

Last edited by Former Member

I’ve had a pouch now for about four years. Battle with chronic pouchitis…… On Cipro/ Flagyl regime, and get infusions. Up many times at night to go.
This and more have caused a lot of stress and high fatigue. I get foggy and forgetful, and sore most of the time. Get patches of calm and feeling good here and there.
I try to make it through !

Does anybody else feel this way ?

I’ve had a pouch now for about four years. Battle with chronic pouchitis…… On Cipro/ Flagyl regime, and get infusions. Up many times at night to go.
This and more have caused a lot of stress and high fatigue. I get foggy and forgetful, and sore most of the time. Get patches of calm and feeling good here and there.
I try to make it through !

Does anybody else feel this way ?

What do you mean patches of good?

And I feel the exact way you do too.

Patches…. Meaning there are tiny intervals, be it a couple days. Every so often ! Where I feel, really good. No discomfort, not many trips to the bathroom. I feel normal actually  ! I really, really appreciate those days……knowing that it isn’t gonna last !!
It is hard ! But, this isn’t gonna beat me !!! It just gets hard at times !!! I sometimes feel normal people just don’t understand !!

Patches…. Meaning there are tiny intervals, be it a couple days. Every so often ! Where I feel, really good. No discomfort, not many trips to the bathroom. I feel normal actually  ! I really, really appreciate those days……knowing that it isn’t gonna last !!
It is hard ! But, this isn’t gonna beat me !!! It just gets hard at times !!! I sometimes feel normal people just don’t understand !!

Sounds perfect! Thank-you

Patches…. Meaning there are tiny intervals, be it a couple days. Every so often ! Where I feel, really good. No discomfort, not many trips to the bathroom. I feel normal actually  ! I really, really appreciate those days……knowing that it isn’t gonna last !!
It is hard ! But, this isn’t gonna beat me !!! It just gets hard at times !!! I sometimes feel normal people just don’t understand !!

This is what worries me. That this fatigue will never abate. That this pouch will never behave.
Taranus, do you have a sense of what is causing the fatigue? Is it the chronic pouchitis? Sounds like you’re on both antibiotics and a biologic (which one?) and is that standard to continue both? Have you been told your current regimen is working to control inflammation? You are very strong for having dealt with this for years now as my current degree of fatigue is unacceptable. I return to work soon and I’m not sure I’m going to be able to do it. I’m not willing to ditch my career for which I’ve spent decades in school and training (not to mention debt) to achieve. For me, I went from being able to work 60+ hour weeks, every week, while I had my end ileo, and prior to the fulminant UC, 80h weeks with 30h shifts. There needs to be a cause or multiple factors contributing to the fatigue. I refuse to accept it as normal. Every day I regret not telling my surgeon to just cut out my ulcerated rectum and sew me up with a Barbie butt after stage 1.  I would have a well functioning end ileo now and be back to work rather than spending the last 7 months in and out (more in) of the hospital with complications. Sorry, I’m a little bitter and despondent right now. I should be grateful to be alive and to have health insurance but so much has been lost and I’m not ok with a life of disability.

@Pouch2021 Don’t panic. It can take plenty of time and patience to explain and resolve a symptom like fatigue, but as long as you don’t give up then this is very unlikely to be anything like a career-ender. You have no obligation to feel grateful when things suck just because they could have been worse. A sense of dread may be a sign of depression more than a realistic forecast, and while the fatigue may well be a symptom of a physical problem (and worth exploring medical solutions to), fatigue is also a very powerful symptom of depression. You’ve been through a lot. Do you feel open to getting evaluated for depression (in *addition* to the medical efforts underway)?

Thanks, Scott, for your thoughtful response. I absolutely agree that low mood could be contributing to fatigue. I’m sure it’s a component. Fortunately I don’t subscribe to mind-body dualism, so when it became clear that the multiple prolonged hospitalizations (without a single visitor), ongoing pain, uncertainty and complications with no end in sight were all contributing to a very poor outlook and a lot of anxiety, I tried to get on top of those symptoms like any others in my body and availed myself of mental health services.  I’m actively treating that aspect of my health to the best of my ability right now. I can’t say it’s perfect but it’s probably better than my pouch right now ;-) I hope anyone in our situation considers the cognitive and emotional toll of this disease and all it entails and gets the assistance they need. It can be a rough road mentally and it’s pretty hard to will yourself out of a mood disorder if that becomes part of the picture.

Hi Pouch,

I can definitely relate to you, as I am enduring a similar situation. I wont reiterate is this thread what I have posted elsewhere.

my life has sucked since feb 5, when my supposed one step became a two step with a loop. I have been tired ever since. I went from a hypertensive individual to a hypotensive individual. I am self employed and I really want to get back to work but each surgery and/or hospitalization really set me back and reset the recovery clock.

I still cannot see how this pouch will work the way it was sold to me. To be honest, while I am not a suicidal person, there are some days I wish I would not wake up the next morning. I have no positive thoughts about any of this and given a chance to redo everything, I would choose a different path.

I know there are success stories out there, my mother in law being one of them, but I cannot see my future with this pouch, other than not dying from CRC.

I do know that I absolutely do not want any further surgeries in my life. I do not think I would survive it in any case.

Thank you for your posts. I find them to be very helpful as they validate my feelings on all of this.  I now know than I am not the only one struggling with this thing they built into us.

I hope we achieve the new normal in the coming weeks and months.

best regards,

eric

@Pouch2021 I’m glad you’re addressing the mental health component. It struck me that I hadn’t mentioned hydration. You wrote that you’re drinking plenty of water, but some folks need more (e.g. oral rehydration solution). If you’re peeing plenty of light-colored urine then your hydration is likely fine, but if it’s concentrated or infrequent then more fluid absorption is needed.

@New577 posted:

Hi Pouch,

I can definitely relate to you, as I am enduring a similar situation. I wont reiterate is this thread what I have posted elsewhere.

my life has sucked since feb 5, when my supposed one step became a two step with a loop. I have been tired ever since. I went from a hypertensive individual to a hypotensive individual. I am self employed and I really want to get back to work but each surgery and/or hospitalization really set me back and reset the recovery clock.

I still cannot see how this pouch will work the way it was sold to me. To be honest, while I am not a suicidal person, there are some days I wish I would not wake up the next morning. I have no positive thoughts about any of this and given a chance to redo everything, I would choose a different path.

I know there are success stories out there, my mother in law being one of them, but I cannot see my future with this pouch, other than not dying from CRC.

I do know that I absolutely do not want any further surgeries in my life. I do not think I would survive it in any case.

Thank you for your posts. I find them to be very helpful as they validate my feelings on all of this.  I now know than I am not the only one struggling with this thing they built into us.

I hope we achieve the new normal in the coming weeks and months.

best regards,

eric

You’re definitely not alone. My period of suck began December 10 with stage 2 ( J pouch formation and loop ileo). I never thought I would be as sick as I was a year earlier when I had my subtotal colectomy and was inpatient 5 weeks, transfusion dependent, on methylpred and cyclosporine, trying and failing to salvage my colon. I had to regain 30lbs and rebuild a lot of strength lost to steroids and immobility. And get used to the bag. But after 3 months I was back fully. And I was wrong. It could and would get a lot worse. I was forced into stage 2 by an ongoing flare in rectum that required steroids. Obviously, the option to have a permanent ileo was discussed but it was more of a side bar conversation, like sure you “could” opt for this but it is PERMANENT and the success rate of J pouch surgery is so high most people get the pouch. You never think that you’ll be the one with the abscesses, obstructions, leaks, etc. It is nearly impossible to fully appreciate and weigh these theoretical risks. I spent most of the last 7 months in the hospital and here I am, nearly 2 months post takedown much sicker than I was with a bag and a little rectal flare. Transitioning to long-term disability from STD was truly depressing. Like you, I just want to get back to work.

I remember you mentioning that a surgeon told you not to expect high satisfaction with the pouch as your UC was under reasonable control and I guess I’m in the same position. The expectation was improvement from an end ileostomy and rectal UC,  and the pouch has not afforded this. Had I been where I was a year and a half ago, sick as a dog, maybe I would feel differently. It’s impossible not to have regrets. I hope time will improve this for both of us, but in the meanwhile, I’m trying to systematically address all factors that might be contributing to this suck.

In addition to addressing strictures and pouchitis, etc. I view the mood aspect as part of this as it can certainly contribute to/exacerbate pain, poor appetite and fatigue. Like you, I cannot imagine going through another surgery so my goal is to get to a place where if that is necessary, I don’t fall further into the abyss. Please don’t think I’ve found a solution to all this. Everyday is a struggle, including mentally, but I feel like I’m now hanging onto the wall with an ice pick, maybe a third of the way up the gaping pit, rather than lying on the bottom facedown, suffocating. It’s small solace but I guess progress. Feel free to PM me if you wish. I’m an open book and happy to share any little thing that may help. I’ll also try to update my own posts so others can see how things do or don’t resolve. I found updated posts most helpful in my own searches of this forum.  You have my full empathy and best wishes.

@Scott F posted:

@Pouch2021 I’m glad you’re addressing the mental health component. It struck me that I hadn’t mentioned hydration. You wrote that you’re drinking plenty of water, but some folks need more (e.g. oral rehydration solution). If you’re peeing plenty of light-colored urine then your hydration is likely fine, but if it’s concentrated or infrequent then more fluid absorption is needed.

You’re absolutely right. Now that I’m forcing myself into diarrhea in order to empty, I’ve reincorporated the oral rehydration recipe (based on the WHO recipe) and coconut water which I used when I had my loop. We’ll see. I pee a ton of dilute urine with 2-3L fluid per day but keeping a bit more intravascular may help. Definitely with the orthostatic dizziness and low BP!

Pouch

I take Cipro 2x day, fold in a Flagyl combo to double up the effect every two to three weeks. Also take Entyvio every 8 weeks……..It is hit  or miss by the day ! Especially when off the Flagyl.

I try to stay positive. Although, I fight depression as well. It may not always show. But, I feel damn glad to be alive !!! I get to watch my kids grow up ! They get to have a dad in return. I endure for all those who never had this chance. Never got a second lease on life. I cry when I need to cry……… because, I am allowed to…… and, you are allowed to cry too…….  We have earned that right !!! All of us have !!

As hard as this is. I can not let it overtake me………. I have to constantly adjust and readjust my life, my diet…… most everything !! I can’t let it beat me. I won’t let it beat me !! I owe it to every single person who never got the chance !! To those who found out too late !

I just want to be honest with you that I never did get over it. It's a constant battle which for me is about half meds and half hydration. Yet I still chase two small children around, have two jobs one of which is an internship and just graduated grad school. It does not have to be life or career ending it just takes a lot of management and being very annoying to your healthcare providers

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