I am just the opposite. I felt my colon was nerve central. If I had anxiety before surgery, I would be running to the bathroom. I feel like they removed half my nervous system along w my colon. People think I am the most calm person they know. I was very high strung before. I think the mind & colon r connected somehow. You could be Emotional just from the drastic change to your body. It will pass. Take vitamins. Your body is probably deficient.
I had some anxiety before and it's worse now. I have to take a xanex just to go somewhere plus I have panic attacks around a lot of people - like at a grocery store. I also have PTSD which in an anxiety disorder.
I had xanex before surgery but didn't need to take it too often. Now it's daily and I've added panic attacks and not wanting to leave the house or drive to my problems.
I was on one antidepressant before surgery and my doctor added another one and had to keep upping the dose to the maximum. Plus she strongly suggested I get in therapy, several times. I did and she was right.
I had a total hysterectomy at the same time and put on HRT. Tonight, on the way home from dinner, this is what I said to my honey. "I'm not having hot flashes or nightsweats so that is supposed to tell me that my hormone patch is working so it guess my problem is everything else I've been through in the past year. Ever since I woke up, I'm been an emotional basket case!" He laughed. I said "I'm so happy you are amused by me being emotional!" He said "it isn't that you are emotional, it is how you said it!"
So yeah.. I would have to say I'm WAY more emotional than I was a year and a half ago. Before all this started for me.
Yup, It ebs and flows but it is definetly there...some days I am the picture of zenitude and others hubby dresses himself up in Hockey Goalie gear to make it through the night...I don't even realise what I am doing/saying but to his credit he now knows that an unsolicited hug goes a long way get me off of the ledge. Along with the emotional frazzels and the unescapable tears I also have extreme fatigue. That said...after a while you get accustomed to bringing a box of kleenex with you to the movies. Hope that you find a good balance Sharon
What the heck is the reason? Is it just because we have been through so much? I just now took an Ativan because I felt another panic attack coming on...seems to have kept it at bay. Also have other stuff going on in my life as mentioned in a different post, but I definitely think the anxiety has gone up since the surgery 7 years ago... I just started seeing a new psychologist. She seems great so far...I highly recommend therapy as long as it is with the right person.
What an interesting discussion. My Dr very recently started me on Prozac and recommended therapy. I have yet to make that call, but now think its in order. I am nearly 3 years post surgery and def seem to be getting worse with mood swings, anxiety, etc. My endocrinologist thinks it may be hormone related and just ran a full hormone panel. Never thought to connect it to the surgery.
I think a good number of people subjected to invasive or physically and emotionally difficult treatments often succumb to symptoms similar to PTSD if not PTSD itself. Here is an article providing some background. Although this article focuses on cancer patients, it seems reasonable that a sub-set of j-pouchers are likely to experience many of the same issues.
The gut and mind connection has been tested and studied. The guts are called our 2nd brain. There are books about it. I think I'll probably be on some kind of antidepressant the rest of my life. I'd like to not be on such high doses for that long.
My daughter just read a book about it so she can do whatever it suggests to avoid having more GI problems. She had 4 polyps at age 24. They did a colonoscopy because she noticed blood and I had UC. She takes Metamucil daily as she was instructed to do.
BTW I did not connect with the first therapist I went to. It took me several months just to get myself to make the first appointment. The 2nd one a saw and am currently seeing is great. She understands chronic pain etc.
She is an EMDR therapist too for PTSD. If you read up on EMDR it sounds weird and it is hard to explain. The way she does it has nothing to do with eye movement. My step-sister suggested I find a therapist that did it and she was right. I've remembered things buried in my mind that just amaze me.
I am going to jump on this thread! From what I gather (9 months out - j poucher and still struggling) when we remove a vital organ we are missing out on several body ingredients (that is what I am calling it) that we all need. That is what I have noticed since surgery. I was thrown into menopause right away from surgery didn't even have a grace period..surgery at age 48 now 49. That is a struggle but yet nothing compared to what we have all endured with surgery. Then when I have spoken to my GI that the colon must contain more than just the function we know of. What first comes to mind is serotonin which GI has agreed with me. TE Marie I can see why it is considered our 2nd brain. When they say we can cure UC not sure I am convinced that this was the cure or that there really is one.
I have tried just about every anti-depressant there is. Have been to a few psychologist and a psychiatrist. Nothing seems to help. How do you decide if you are depressed or just completely lazy. It just takes everything I have to even get in the shower most days. I work as a contractor so can work when I want but have been doing so little lately my bills are really getting behind now. Any suggestions on how to get more motivated? I am sorry this is happening to so many but it is kind of nice to know I am not the only one dealing with this crap.
Janita, Go to a different therapist without all the big titles and initials, seriously. I went to a psychologist who said nothing was wrong with me. Then I went to an licensed social worker and some other designation who also is trained in EMDR, who asked me standardized questions and received the proper diagnosis. The first guy was goofy. If you told him, "It's hard to get out of bed" he said to add the word "yet" to it. It's hard to get out of bed "yet". I called him the "yet" doctor. I wasn't driving, I had a hard time leaving the house. I had anxiety attacks thinking I was having a heart attack, etc. Plus like you had a hard time getting out of bed. The getting out of bed problem didn't prevent me from getting out for the restroom...... I doubt you are lazy, keep looking until you find a therapist that can help you. If you are not on an antidepressant see your regular doctor and he/she can prescribe something for you. That may be all you need. If you are not motivated to get out of bed when you have bills to pay, I'd guess you are depressed and/or have anxiety. I'm not a medical professional, just have seen a lot of them as a patient
I never had anxiety or depression until this surgery. I had the surgery almost 5 years ago and finally 3 months ago went to the dr. to get put on an anti-depressant/anxiety med. It has helped tremendously but there are still times I miss the happy go lucky person I used to be. I know that we are all so fortunate, but at the same time----it stinks sometimes!!!
I think it's very interesting how some of us get affected by anxiety/depression after surgery, and some of us do not. It might be medication, PTSD, a predisposition, etc. But I do believe there is a strong correlation between mental and physical health, and that doctors/surgeons should be doing basic screening as part of any major procedure, because depression can certainly have an impact on one's recovery time. I know studies have been done with cancer and cardiac patients, but I think this needs to be expanded to other types of illness and surgery.
Went to PCP today for check up we talked about the anxiety that I have now post surgery. After alot of discussion she and I decided to try me on Effexor 37.5mg ER, I totally forgot about the extended release issues we non-coloners may have as previously discussed on this site. Wonder if it will be a problem. Haven't taken one yet.
Maybe call your PCP back and let her know about the time release issues. You can be switched to standard Effexor, or perhaps another type of medication such as Cipralex (Lexapro) which is also prescribed for anxiety issues.
Good luck and keep us posted on how you're feeling.
I take Ativan for anxiety when needed & to help me sleep. It dissolves under your tongue. Goes right into your system. I remember taking vitimans & seeing them go right thru me & into the toilet whole!
I tried Effexor several years ago & didn't like it. Made me feel like I was outside of my body. Really weird. Everyone is different.
I took Ativan for quite a while. Never had any withdrawal problems. Also, I took Lexapro for some mild to moderate depression. I am drug-free regarding the bowel stuff. I do take one Culturelle capsule in the mornings and one small bottle of DanActive in the evenings. These probiotics seem to keep the old pouchitis at bay. I take a chewable vitamin every day called Forvia. Especially made for folks with IBD issues. This is OTC by mail.
I had a bad time on Cymbalta and instead of tapering off I quit taking it cold turkey. Bad idea, it took 2 weeks to get through that. Some other people love Cymbalta and it works well for them. Did she taper off of it or just stop taking it like I did Cymbalta?
I bet we could find people on here that have had a hard time with about every drug from antidepressants to pain to anxiety medications. Just because she had a hard time with it doesn't mean you will.
It's a big step and there are many medications to choose from. Maybe all would be better if you'd just request a different one.
I have decided to not take any anxiety meds. Going to try and work through all this without them and find a better way to deal with it. I am def going to start doing some form of excercise other than just walking my dog. I hear yoga is awesome for the mind body and soul. Will get a yoga dvd also to add to the mix. I just decided I don't need to be addicted to any more meds. I am down to a half of an ambien now to sleep at nights. I did have a major achievement last night, I didn't wake up at all during the night to go to the bathroom! WHOO HOO!
Wow, so much of this is *me* to a T. I only wish I knew I wasn't alone a long time ago. I've now lived 1/2 my life with a J pouch and some complications along the way. Depression and anxiety have been huge for me and I've been on all kinds of meds.
I feel like I am never happy....never satified....even when I don't feel physically ill. There are times I don't want to get out of bed either. Or I do just what absolutely has to be done to keep things going at home, work and with the family.
So often when I don't feel physically well, I will lay low and I don't much, preferring to lay down. I would expect when I do feel well, that I would take advantage of it, be grateful and take life by the horns. The last few days I have felt quite well, physically, and I don't feel particularly depressed. However, I still want to lay low. I just want to rest because it is comfortable to do so. I haven't been feeling the restlessness and discomfort throughout the night the last three nights so I just want to enjoy resting....comfortably.
Rationally, I understand it. I am tired and need the comfortable rest. I wouldn't feel guilty about it if I didn't have kids and a husband who need me to be engaged. I just feel lazy and guilty.
Yes, more than ever....haven't changed clothes in days and crying constantly...isolating. I am on Zoloft , buspirone, but have experienced 3 major losses in 5 weeks, and don't have friends in this mtn. Town of Big Bear. Dorner is a sad situation....good luck my friends. This, too, will pass. Love your friendship. Sally
Sally, Come to Paris for a huge hug....spreak ashes off of the Eiffel tower or fly a baloon off of it or send ribbons flying...you need to feel light again, free and find peace...drugs help when there is a crisis, and yes, I know of no worse emotional crisis than yours, but you need to discover where the joy is hiding in your life...when I left home at 23, I hid about 30 little notes all over the house, in purses, pockets, closets and drawers for my parents to find...I knew that my mom would be depressed by my leaving...there was no internet and long distance was a nightmare here in France (up to 3 days to get a line!)...she slipped into a horrible depression that I don't think she ever really came out of (or forgave me for)...prosac didn't exisit back then either...you need a project, something to keep you busy and make your mind occupied...Especially if you don't have any friends over there ( I know the feeling well!)... For the others who find getting out of bed a challenge and who are not still sick (or who don't get up every 3 hours for bathroom runs)...don't give yourself a choice. I don't 'allow' myself to sleep in...I forced myself up when hubby left for work 7:45am or earlier if there was something interesting to do (the open air farmer's market here is on Tues/Fri mornings...I never missed one)...it was only 2 days a week but enough to force me out of bed with enthusiasm those mornings. Didn't matter that I couldn't eat most of the things there but there were people to chat with, things to see and no one to judge me. I went with filthy hair or in jogging pants, often leaked and had to run to the nearest café but it was a walk, a morning out, some fresh air...I walk there so it is great for me...the other mornings I made scheduels like laundry on Mon, baking on Thrus, grogeries on Weds...I would crash and burn in front of the TV later but at least I had accomplished something in the morning...it was my saviour...my way of not letting the disease win...I am probably more stubborn than depressed most times and so it is that stubborness that wins out over the depression (not counting the afternoons spent with Hagen Daz or tons of chocolate etc)...I will get lambbasted for this but the best remedy for depression is exercise...long walks (if you can)are a good start and so is swimming if you can find a place close to home (sorry but when I was incontinent I couldn't swim for obvious reasons so I missed it terribly)...Whatever you do, start slow and work your way up...even a walk around the block is better than not at all... Hang in there guys...we are all just doing our best Sharon
Hi. I had total colectomy in April 2012 with ileostomy, jpouch with loop ileostomy in August 2012. My reversal was in October. I hadn't realized it or maybe didn't want to think it could happen to me, but I was told there is almost no way you don't have sine kind of depression or anxiety after what a body and mind goes through after these surgeries. I am tired, I want to sleep or at least stay in my bed all day. I would rather not do my hair nor makeup, luckily I stay home with my 2 year old so he could care less if I'm all dolled up. But my husband would like his wife back!
I don't leave the house unless it is absolutely necessary, partly due to the lack of want and partly due to the urgency and bottom pain I still have. I want a little bit of my ambitious self back and so would my family!
I had my takedown surgery April 18th 2012 and to me things are still not where I want them to be. But I do agree with Sharon that we need to make ourselves get up in the morning even when we don't want too. I did leave my job right before Christmas, I was just having too many stress issues. I still have my alarm set for the same time as when I was working 5am. I get up get my cup of coffee, check e-mail etc...get the hubby up at 5:45 and he leaves the house around 6:15ish, most mornings I would love to go back and lay down but I stay up. I have promised myself that I will start an excercise program this week. Don't want the expense of a gym right now so will use a workout dvd. That is my goal I hope I stick to it I think it is great we can talk about this anxiety on this site, most people wouldn't get it!
I stated yelling myself the same about a week or so ago. I found myself laying on bed with my son all day, getting worse each day. He is two and my daughter is five... I was always active with them and was upset at myself how I now keep them in my room watching cartoons all day! I can't become lazy, I need to feel better physically and mentally, if not for me but for my kids, they deserve it.
Holly, what food/medicine regimen did you keep to heal after your takedown? It seems all foods either give me gas/bloating or anal pain, diareah.
holly and others. check around for a beginner or restorative yoga class (no hot or power yoga). Look at the YMCA, churches, municipal places. You will often find free or very inexpensive classes. Even committing to that once a week, may help you. Gets you out, around some other people, and gives you a sense of accomplishment.. meaning "you did something." and of course, yoga is so very good for the mind. It may just be what you need to get over the hump.
I hope it goes away, but as long as we are waiting for the other medical shoe to drop it is hard to make yourself carry on like before.
I don't remember the name of the 20 something beautiful actress I saw on TV the other day, but she helped me have a light bulb moment the other day. The results of her latest testing said she was cancer free. She still had no hair but was beaming. She said she was so happy to be "cured" and she wasn't taking life for granted anymore. She was beaming and I am truly happy for her. On the other hand I was jealous as she is cured and I am not. My light bulb moment is I think I'm never going to be cured. I have other medical issues besides my UC and j-pouch and each day is a huge chore.
I admire your drive Sharon. I just don't have it in me at the moment. We often know what is best for us but can't muster up the drive to do it. I worked many years pushing myself even with a UC/IBS & Fibro diagnosises. I don't have that in me anymore. We can tell ourselves there is no reason to be depressed and have anxiety but I can't "suck it up" anymore.
Sally, I don't know what your other losses were but loosing your daughter is the worst thing I can imagine. You are grieving and there are many different stages of grief.
Sally, I can only send love and hope...that is all that I own...and the honest belief that if we cannot control our bodies, at least we can control our minds...or how we respond to all the crap that is thrown at us daily...ps. when in doubt, blow bubbles...I have never seen anyone sad while blowing bubbles. ...Some days the only thing that gets me up and putting one foot in front of the other is knowing that the step-grand kids are coming for lunch or the step daughter expects (nicely so) her weekly cakes and her lunch doggy-bag...I make the meals & pastry more and more elaborate (Chinese new year feast) or organise something strange and exciting...I don't do it for me (I usually complain and b-tch while doing it but smile none the less) but just to force myself to not stay & spread on the sofa...I need the challenges to move forward...I know that I have every excuse in the world to stay in bed but If I ever allow myself to do it I may never get up again...If I don't exercise I am in so much pain that I can't move so I exercise, If I don't cook, I eat junk, so I cook...it is not courage or strength but fear that keeps me doing all of this and the knowledge that this can all fall apart in an instant...and that it already has, a few times... TE, I am just thrilled that you have the strength and courage to get up and move forward every day...you have enough challenges for a dzn people and you are facing them all with beauty and grace... Sharon
Last time I treated it for 7-8 months before "remission". Part of the time was with Anucort suppositories, the rest with Canasa. The Canasa finally worked and I was on a maintenance schedule of a couple times a week before this blew up again. Acute and Chronic cuffitis (UC) and IPS was the Mayo diagnosis, thus the maintenance dose. It's UC all over again, along with c-diff and IPS.
I'm calling Dr. Loftus's nurses today. I don't think there is anything else to do.
I will give you all a little chuckle for now! My daughter is in her Jr. year at college but had to go to a specialist yesterday for her lower legs compartment syndrome. I picked her up and took her (thank God). It was a very aggressive test for her 4 Novocaine injections in each leg and then another big needle in each of the 4 sites to check for pressure of the muscle and fascia. Then she had to go and run/jump etc. to make herself in lots of pain to go back and measure the pressure to see if it was Compartment syndrome. I found her a private area to jump up and down and it was near a ladies room. That is where I had to go! I left her for five minutes. Well, next thing I am on the throne doing my thing which is painful enough for me and I hear her yelling "MOM"....well she rolled her ankle and now it is a very bad sprain. Funny part....I come out of the ladies stall running with my pants half up (two men near her) zipping my fly and doing my belt. Chaos around us and she ends up letting out wind herself and she turned her tears to laughter for a short time. We both started to laugh!
Now reality has set in for her and she is disgusted but still hoping for the best. I told her this can be fixed! Of course, I didn't sleep much last night worrying about her!
This too shall pass! How about one of us out there winning the lottery?
Heidi, I still have to be very careful of foods that can make me gassy. I don't eat broccoli or cabbage that is for sure. I had horrible gas pains it seems every afternoon when I was working (worked in a small office & left my job right before x-mas) and now that I am home and can release the gas when I need to I have really been gas pain free. I can tell when things are starting to rumble around and know it is time to be near a bathroom and not hold it in.
I guess it all depends on the person. I pretty much stay away from the foods I couldn't eat before all my surgeries and during my surgeries. I still am quite afraid of the outcome it might cause.
I get so bloated and the noises that my stomach makes are incredible LOL. I'm constantly having to say, that was my stomach, not the other!
I don't know about you, but the only way I can release the gas is if I'm laying on my side or occasionally on the toilet..?? Not sure why??
It also can be very painful at times when the gas makes it way into the pouch or in the anastomosis area, has this happened to you or others? I can't wait for my bottom to have no pain, when does this go away?
lovedby2 I have had the same issues with gas. I was up the other day from 1 a.m. to ? with severe gas pains (it wakes me up) and then I have to get up to move everything. Laying down is the only way I release the gas or on the toilet. After I go I also belch all the time. Not sure if this is going to change over time. I certainly hope so. 9-1/2 months out from take down surgery.
You guys are doing well to be able to release the gas build-ups. I am 2 years out and can pass gas without going to the toilet, most of the time. Putting your head lower than your bottom also helps move the gas through your system. Downward Dog yoga pose, get on all 4s and lower your head to the floor while your butt it in the air. Hold the pose 30 seconds or so.
At times when it feels like you have more BM to come out it helps to move around a bit on the toilet, like lifting a let in the air, standing up over the toilet, bending over getting your head closer to the ground, etc. That way you can just sit there once rather than having to return to the toilet in 5 minutes.
Have you noticed your weight can fluctuate a lot during the day? I am 5 pounds heavier tonight than I was when I woke up. I always drink a sports like drink first thing in the morning, as I wake up dehydrated. I also get headaches and nausea in the morning - then it's time to drink water with hydration.
Thank you for all the advice! I am going to try everything you mentioned. I too wake up very dehydrated and dome times feeling nauseas. I started having a Gatorade Mr t to my bed, because I almost pads out each time I have to get up at night, which is too often. I really wish I could only have one or two trips to the restroom at night!
I too have found rocking back and forth on the toilet helps to build up that feeling of having to go more.
Being two years out, how do you feel physically? Are you taking anything, meds? Have your BMs slowed down or at least managed to where your not always wondering where the restroom is when in public?
I am 31 with a 2 and 5 year old and I don't like leaving the safty of my home!
Step one April 2012 Step two August 2012 Step three takedown October 2012
Heidi - It does get better with time as they have said. My body is adapting better than it was at 4 mos. I am finding now if I eat crappy foods I suffer a lot more. The better the food is it seems to be easier on my digestion. I have been going to acupuncturist and that seems to be helping with inflammation. I kept asking how do you get rid of inflammation or learn to control it. I am now taking flax seed oil, chewable probiotics and liquid probiotics every day and have noticed a big difference with inflammation. I am willing to try anything. Also, like TE Marie has said about yoga doing that as well helps a great deal!
This certainly isn't the easiest road we are walking on!
Heidi, it sounds like you are quite busy! My children were 22 months apart so I know some of what you are going through. On top of that you've been ill. I wasn't diagnosed until my children were in high school.
I'm not the normal j-poucher, which is why I'm on this site a lot. I have chronic cuffitis and keep getting c-diff infections. I also have other health problems of which fibromyalgia is the worst. I'm also old enough to be your mother, so there's the age factor.
The doctor that did my flex j-pouch scope at Mayo showed me the interior of my pouch. I didn't take any medication as the nurses said he was real good at doing colonscopies on people without it. I had cuffitis, so it hurt a bit. He says my pouch is well constructed and a good size so in the future I should only have 4 BM's daily Time will tell.
As Roberta's said it's good to find out the foods, probiotics and supplements you need. It's a long trial and error road. A food diary might help. I'm bad at that. Something that bothers you today may be well tolerated in a few months. Your j-pouch is still learning how to perform a new function so it's a gradual process. If you look at now and how you were doing a month ago I bet you are doing better. It is a "s l o w" recovery.
It is good to hear positive out of this. I keep telling myself, be patient and keep the faith.
I too seem to have "flare ups", inflammation. I will definitely try the yoga and the food journal, I've been keeping one but in my head. I was recently told I needed to be dialated and had it done twice in the Dr's office...hurt like you know what. I recently lost my insurance, so I've tried to self dialate and it hurts, the opening is so small as well ad the anastomosis. Not sure how it really looks inside but, I had my rectum removed ad well, the anastomosis seems to be at a sharp right as you go in!?? TMI, I know but shouldn't it go straight in not curve? Any information on that will be appreciated.
Thank you both for talking with me, as you can feel so alone sometimes.
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