Depressed after J-pouch--a mother's plea

Recovery often includes a roller coaster of emotions. I am sorry to hear your daughter is having a terrible time. Her surgeon may have a good referral to a local therapist. I love my j-pouch but many people have a long physical adjustment period that can be depressing. Is she willing to communicate here and maybe have help on specific problems?

I was also very depressed and also had horrible anxiety. I would definitely consider an antidepressant--it helped me get through the tough time, then I went off of it in a few months. They do take time to work, though (approx 4 weeks). Just keep encouraging your daughter, letting her know things will get better. She is fortunate to have a loving mother by her side--it's a very tough thing to go through.

Zebra,
I am so sorry that she is suffering through this, the physical pain and suffering is bad enough but to have to suffer from mental anguish and/or depression makes it all the worse...she could also be suffering from PTSD which is common after this type of surgery expecially if it was a sudden decision or emergency surgery.
PM me and I will see what I can do to help you out.
Sharon

Zebra- I'm so sorry to hear of her pain. How far along in the surgical process is she? For me after my step 1 (colon out, j pouch creation w temp ileo) I found every day to be an emotional struggle. I resisted the antidepressants (big mistake). I spent every day crying and having a pity party. I convinced myself that my life was over and it will never be the same. I know exactly how she feels. After my second surgery i finally started the antidepressants and they have really helped to pull me out of the slump. I've become active again, I go out all the time, eat everything, the pouch is functioning great, life has become good again. Has she talked to other j pouchers? I always found that to be helpful. Also she could come here to vent if she wants.

I have my pouch for 7 weeks and it can get depressing. Huge adjustment on body. Different sensations, sometimes unpleasant and painful. Long recovery and life may be on hold temporarily. I had the osteomy for a while and am struggling getting used to the jpouch. We have all been there. It is normal but should not last months and months. Try to keep busy a little, though energy levels may be low. Go out for fresh air, some shopping, maybe a spa treatment to lift the mood.

Also has her vitamin and bloodwork been checked recently? Sometimes low vitamin levels can add to depression feelings and lack of energy.

I read here not to measure progress week by week, but more like month by month.

you will find that she has more bad days with some good. Hopwfully soon will have more good than bad. I'll start to feel OK, not to much burn, then something happens and my ass is on fire, back on the toilet again. No particular reason why. This will happen. Just remind her to stay positive, focus on positive.

I am guilty of getting depressed and frustrated with my progress and feel I am behind others. Try to laugh, joke, take breaks, make things more confortable with things like bidet, baths, creams, etc. once things calm down with the pouch it is easier to cope. Now she must be feeling down and it requires so much patience (more than I have! ). Good support system and kind people of this site can make things much more bearable. I find that surgeons may be good but then u are on your own trying to figure out the pouch. Reading about it and talking to others who understand and have been thru it helps. I hear there are therapists that specialize in disease/surgery. This disease and all the surgeries and hardships really tests one's strength an faith. I'm trying to keep mine as well. Good luck and wonderful mom u are.

I am so sorry your daughter is going through this. I am rarely on the site anymore, but was for a long time. Just hoping to help some people with advice/experience. I am 40 years old, and had the surgery 5 years ago...so about your child's age. I was VERY depressed, suicidal even...didn't want to go on...wrote in a journal every day and took tons of anti anxiety meds, which really helped a lot. I saw a therapist for a bit, but not in your area. It helped too. It's just time that heals. When the pain got better (and I found the right meds for that) I got better mentally. I too regretted it at the time, but now I am SOOO happy I did it. Hard to see the future when you are in the middle of it all. I had HORRIBLE complications, which could have been fatal. Things are certainly different now, but nothing that anyone couldn't handle. Life is a whole lot better without UC...and you can tell your daughter that since then...I've had a 2nd child and I'll be competing in my 3rd triathlon in 2 weeks. The first 6 months are the hardest...then it's all up hill. Good things are on the way!

isn't this site great? so many helpful people and they share their experience. wow, to have a child and compete in a triathlon after this is AMAZING! i couldn't even do a triathlon Pre-UC we are tough people! we will get through this!

I had anxiety and depression a few months after my colectomy. I was struggling through complications, and I think the reaction to having emergency surgery and many complications, plus uncertainty about having any sort of normal life in the future finally hit me all at once like a ton of bricks. I personally didn't like the way anti-depressants made me feel (spaced out and disconnected), but everyone is individual. For many people they are a blessing. I did have ativan (an anti-anxiety med) for a short span and that helped me sleep, but not something I wanted to rely on long term. What it comes down to, is that these surgeries are life changing experiences and there is bound to be some adjustment period. It's not just the body that has to heal. Some people are lucky enough not to have the emotional component, but what your daughter is going through is a normal reaction to a life changing event. Tell her not to be afraid to ask for help. A therapist who specializes in chronic illness or IBD would be helpful in getting her over the hump.

I think most of us would say we went through that. I did take Lexapro for a time and did not have any trouble with it. It is a huge adjustment for someone. It is so great you are there for her.

Thank you all for your advice and your comments--it has helped me feel better and I can help her with this support from you.

Hi Zebra and the rest who responded to your post. I can relate to the comment about PTSD as I went through a tough time about six months following the take down and found myself having symptoms of PTSD (nightmares and some flashbacks). Having this type of surgery definately plays havoc on a person's mental health. I was already on an anti-depressant but had to have it increased in order to help me cope as I became suicidal. I contacted a Counsellor and worked my way through the emotional stuff and have recovered. Life is definately different than it was before but I thank God everyday that this surgery was available to me as I had very few other options due to my adverse reactions to the medications.
Be sure that your daughter has her iron, blood sugar and thyroid function checked prior to taking an anti-depressant. Symptoms from low iron, out of wack blood sugar and thyroid problems can mimic depression. Let her know about this site as others have mentioned. Personally, I find there is nothing more supportive than sharing your fears, problems and hopes with others who have been there, done that and are willing to share their experiences in order to help others, myself included, learn how to cope. The stories of challenges and successes (a marathon....really...Wow!) I read about on this site helps me to keep up my fight for a healthy life. Thanks everyone! Best wishes and prayers for your daughter, that she will adjust, get support in ways that work for her and move on to feel healthier and happier soon.

Hi everyone,

I would say that being depressed after this surgery is totally normal. I had the three surgeries done through the ages of 13-14 (I got sick when I was 12), and it was very, very difficult mentally. I was incredibly depressed after the second surgery. I didn't eat, drink, basically, after they sent me home they had to readmit me through emergency two weeks later as I hadn't eaten or drank barely a thing, and I'm pretty sure they poured IV fluids and TPN into me like a waterfall.

Anyway, that was a long time ago.

I'm 26 now and I still deal with a lot of difficult emotions over this surgery. I didn't want it to begin with - I was only 12, just barely 13 when the surgery happened - I, of course, had wanted nothing to do with it. But they did it anyway, and that unwillingness to go forward with it, I think, has always had a very strong effect on my mentality. I always feel that I didnt CHOOSE this surgery, it was forced upon me without my consent - so how could I make peace with it?

And I have by no means been an easy patient. I've had problems galore since the jpouch surgery. I constantly have issues with pouchitis, cuffitis, fissures, fistula - I'm on Remicade, steroids, anti-inflammatories, anti-biotics, industrial strength pro-biotics, narcotics for pain control - you name it, I'm probably on it.

But I also kind of accepted that I still had to do something with my life, so I went to law school - twice - and now I work in an Insurance Defence firm. I'd like to move into (ironically) - medical malpractice. Because I've been exposed to so much of it through my medical life.

It's normal to be depressed. Especially a young girl. You have all kinds of feelings of worthlessness, being "damaged", being useless, being unappealing, and on top of that, the huge physical strain of having an illness to begin with - and all the complications and pain and suffering and anemia and exhaustion and seemingly unendless problems that go with it.

It's normal to be depressed when faced with a huge, life altering surgery. Because your life will never be the same again, and it's very difficult to say goodbye to your health. You sort of have to go through a grieving process. Losing your health is like losing something very important to you - you have to grieve and eventually, hopefully, come to SOME kind of acceptance (I'm still struggling with this one).

For me the thing that sort of turned my life around wasn't anti-depressants (which I refused to use), or counselling (which I found desperately unhelpful), but was the treatment of actually what I found was the problem. I wasn't so much upset that I didn't have a colon - I was upset at the consequences of that. Basically, I was upset that my whole life seemed intolerable now, since I had to go to the bathroom every 30 mins, and I didn't feel like I'd ever have any kind of quality of life again.

So after a lot of treatments that didn't give me the results I wanted, my doctors in London (I was living in the UK at the time, and very luckily, since my doctors are some of the best in the world when it comes to pouches), started prescribing codeine for me. That was when I was about 19. I'm 26 now and I'm still on it, although I take a different (long acting) version now, called codeine-contin. It was a lifesaver for me. Before the opiates, I was just like a dripping tap - always inflamed, always in pain, always a sense of urgency, always in and out of the bathroom (even with the pouch). When I started codeine, it totally changed my life. Normal people, when they take narcotics, usually have to take a stool softener with them, because they dry you up so much. Well. Isnt that the perfect solution for j-pouchers. I started taking codeine - in the beginning, before some kind of event (a concert, or trans atlantic flight, say), and when I took it, I wouldnt have to use the bathroom for hours. And it got rid of all my pain.

And so I take it all the time. Well, in scheduled doses. I take it twice a day, and I have stronger meds for "breakthrough pain". It's completely changed my life. I never have to worry anymore about anything. If I want to go out - to the mall, to the beach, on a plane, on a camping trip (I travel overseas a lot), to a theme park - it's like my life saver. I just make sure I have my pills, and everything is great. My doctors even acknowledge how much they've changed my life.

Remember - it might not be the pouch itself. It might be the fact that the pouch performance isnt what she hoped it might be. Well - right after surgery - it wont be. But it will grow and learn and adapt. And a lot of people might suggest immodium - you can try it - that never worked for me. Actually, I hated it. It caused me all kinds of stomach pain and a "backed up" feeling. It never worked for me.

But codeine has been what has given me my life back and it's wonderful for me now. I can get on a plane to anywhere - england, ireland, florida, whatever, I can even take a window seat, and I just make sure to take my codeine, or percocet, and I know I wont have to use the bathroom for the whole journey, and I wont be in any pain, and it's a wonderful sense of release and freedom. I dont know what I would do without them!

So look at the reasons for the depression. If it's a quality of life issue - remember, there is a lot that can be done to improve your quality of life.

jennybean - welcome to the site. I'm glad you're doing so well now. I'm wondering why you refused to take antidepressants? Had you had a bad reaction to them?

kathy

Jennybean,

Thanks for your suggestion regarding the codeine. I'm 2 months out from surgery and the urgency/frequency is affecting my quality of life. I have difficulty making it through the work day and I never go out socially anymore. This has been difficult as a young guy who was active in athletics and a lot of events. I plan on researching this to see if it is a possible treatment for me as well.

Yes, I was/am depressed and I am on medication for it. I also had fear and anxiety for years. And, after joining this forum, I am convinced I suffered from undiagnosed PTSD.

Please, please do tell your dear daughter this is completely normal. I wish there were people around to tell me this years ago. It would have saved me years of grief, anguish and guilt.

Your daughter is very lucky to have a mother who cares so much and is in tune with her.

I wish your daughter all the best.

Oh, I forgot to mention....There are many posts on here about the mind/gut connection. I wish I could remember the one that mentioned there is recent research about this and that it ties in to our compromised ability to absorb.

That being said, it is good to be aware this can be a two pronged situation. There is the trauma piece and the physiology piece.

It may be the depression passes with time and/or short term treatment. Or she may find she needs on going treatment and/or antidepressants. Keeping a close eye on blood work and vitamin levels is important, as well.

Knowing this is "normal" helps one understand, work with and accept it more easily. Or, at least, not blame ourselves and wonder why we "can't pull it together."

I hope this makes sense. I'm just speaking from my personal experience.

quote:

R

quote:

R

Hi All,

I too am extremely depressed i'm 27 years old, 26 when I had to have the first surgery. I currently am on cymbalta for depression and cipro and flagyl for pouchitis. I guess I just thought the reversal would be the light at the end of the tunnel that I needed, but after pouchtis and extremely bad butt burn it is really hard to feel that way. I just want to be able to go out for a glass or 2 of wine with the girls without having to run to the bathroom. Can someone please give me hope that this will get better i'm so down and depressed..getting out of bed is even difficult.

Thsnks,

Chrissey

I also battled a lot of psychological changes after my surgeries. It is tough to train your brain that this is your new "normal". It is as much as a mental as it is physical I think maybe even more mental than anything. I always had a laid back personality would never let anything get to me was always the positive one and could put a positive spin on any negative situation but things changed a lot after my surgeries. I'm a 30 year old male and it used to be hard for me to let any tears out ever and I found myself in the bathroom crying like a baby in the mirror. I totally lost control of my emotions and that was hard for me because I was always in control of everything. I started therapy and also had to do marriage counseling so my wife could understand the changes I was going through. I was taking xanax because I would get extreme anxiety. I still do today (7 months post takedown) but not as much as I used to. My therapist also suggested I try an antidepressant because I would start to think negative thoughts and be stuck in that thought process all day. I did research because they are all different in ways and discovered that Lexapro was the one that best fit my situation. It takes time like someone else said about 4 weeks before you start feeling the effects so it takes some patience. She is still very early in her takedown and I definitely understand how she feels I wanted to feel better the day after my takedown but this is a long rollercoaster ride and she has to hang in there because things do change for the better and keeping a positive attitude will help that. It is great to have a support system like yourself she needs that and I give you a lot of respect because it is very tough to deal with as the caregiver because you become just as frustrated as we are because you can not do anything to make things better you just have to wait it out. Having someone there to comfort you in those hard times is a wonderful thing so just know you are appreciated. Its not a bad thing to take these meds that's what they are there for as long as they aren't abused. People make us out to be crazy people because we need pills to help us get through the day but there is nothing wrong with it if it help and she needs it and its not something she needs to be on forever. Hang in there and good luck. Its a good thing you stumbled upon this site because this is a great support group also and you can learn a lot from the experienced Jpouchers.