normal to cry every night?

Yes, within reason.
You could be suffering from PTSD and the stress from the trauma can be crippling post op...your body has been through something huge and your brain needs time to be able to process and assimilate it ...baby yourself for now, make sure that there are people around you to keep you company and to talk with...keep your freinds around as much as possible, by phone if nothing else.
Are you able to eat normally yet? How are your vitamin and electrolyte levels...both can be responsible for depression, especially the electrolyes (dehydration)...make sure that you drink enough fluids and have enough salt in your diet.
That said, if it continues for 'too long' then you should talk with your GP or surgeon (depending on what kind of person they are, they may be able to help you or guide you to a group or a specialist to get it all out and help you to feel better)...unless this is normal for you I would maybe wait on the meds and stick to talk therapy for now.
It takes a while for it to get better but music, funny movies and good books go a long way to distract you and make you smile.
Sharon

my crying comes at night during my cluster bms and the discomfort that surrounds them and i start to feel hopeless like this will never end. i know im only 19 days out but dear lord it can be agonizing at times. i was advised to start adding fiber to help empty without straining but it led to some holdable but very uncomfortable urgency that was gassy and acidy. that reaction will put me back in my safe food shell of crackers and toast. i need to up my nutrition but fear the payback. the fiber i added was single grain baby food oatmeal for crying out loud. i know the crying is from depression too but its a hopeless fear ill never feel good again. i swear i felt better with colitis at times. if i didnt have the spasms and butt burn the rest of my body feels great and most days are really good only going every 4 hours and that gives me hope til the nights come...

I did A LOT of crying but it was after my first surgery. I didn't start feeling better (mentally)until after takedown. I would say its normal but if it persists I would seek some help maybe. Sometimes it helps to talk things out. These surgeries are very traumatic and it is hard physically on our bodies too. Hope you feel better soon.

Why do we let people intimidate us into thinking that crying is a bad thing? It is a natural pressure release valve to pain, anger, shame, discomfort, humiliaton, dispair, dissapointment...and a whole lot of other feelings...it is holding back the tears or being told not to cry that I find dangerous to us...we need to let all of those feelings out before we start to bottle them up and block them out...and then need to pay someone to open up those blocages for us.
Sharon

So true Sharon.

my words at night when i begin to cluster are "i cant do this anymore, its to hard and i just want to be done with this part" it gets so bad on the butt burn i beg god to help. maybe im just weak or something but like i said i added oatmeal yesterday and the volume of stool and the butt burn increased huge. i fear food period. back to toast n crackers can someone give me the low down on fiber. i thought oatmeal would be good to help with the straining and it definitely did but the increased stool and butt burn were way worse. would i be better off with a supplement instead and if so which one. my surgeon at cleveland clinic swears by citrucel and said she prefers the powder for her patience but the caplets will do fine. should i use those and avoid fiber foods until i heal a bit more? i cannot have another night like last. i seriously cant handle it. i really hope you people have not dealt with the clustering and butt burn like me but if you have and dealt with it better than me you must be made of steel...

No, you are not weak...you are so strong but you just can't see it yet...you will once you are past all of this 'bad stuff'...for now, do what my dad made me do when I was a kid (sorry, you are going to hate it but...) I slept in the tub. That's it...I was so liquid and running like a tap that he just stuck me in the tub with a pillow and my blanky...and had me just run the hand held shower to rince off every time (mind you, if you have a bidet it would be better but you probably don't)...you cannot let emotions like distaste take over...you need some sleep and that may be the only way to get it...and please, NO toilet paper any more. If you don't have a bidet then a squirt bottle will do or a pitcher of warm water...my mom used to put liquid glycerine into it to wash me off with and it seemed to help (less burn)...the TP is going to kill you in the condition you are in...worst case senario use a wipes but I prefered the warm water. It is easier on the bum.
Can your doctor prescribe a local anesthetic cream for you? Mine did when my stoma fissured and the pain was unbearable....lasted about an hr each time but that hour was lovely.
You need to keep a friend on speed dial, someone that you can talk to who won't judge you and just give you love and support. This is the hardest time of all.
Have you been on the BRAT diet? (bananas, rice, applesauce, toast). It may help a bit. The applesauce is sweet but thickens things up nicely. The rice can be cooked with double the water and if you drink the extra water it is very 'binding'.
You are probably so dehydrated by now too so please drink a bit (honey, lemon, warm water or tea)...and hold a heating pad to your tummy...it is very comforting.
Sharon

well it seems im just the opposite. i feel constipated and have to strain to pass it. rice nearly killed me the other night so i tries oatmeal and that tripled my stool volume and made me gassy and burned even more. today ive added citucel and increased my fluids. im gonna try stopping food at 6pm to see if tonight will be more tolerable. my days are a pleasure. its as though im completely normal during the day then around 9pm its cluster struggle n strain for a few hours. i do sit on the tub after to rinse off. your right it does help. i tried stopping my imodium to maybe thin things out but my butt spasmed like crazy. back on n the spasms stopped. will life be worth it after all this. i feel so worthless to friends n family and to myself. life was so great before this damn disease. its hard watching life and everyone in it love you so much but sort of pass you by while they get on with their lives. watching family eat n function n go out without fear. this is not me. i was the one living more than most before this. dear god this disease is merciless. i also hate knowing its not a sure cure. couldnt god at least give us that after all the suffering? jeez...

Oh, Goodness...that is a whole other can of worms...yes, they are out living their lives while you are locked in the bathroom struggling to poop...yes, they are eating whatever they want whenever they like...and no, it is not fair...fair does not exist...not in our world anyway...we make our own fair.
But you are just as good and loveable and deserving of their love and devotion and attention as you were before...more so now that you are in pain and suffering.
Wouldn't you be the first one there to help one of them if (and when) they need it? Won't you hold their head while they vomit or the hanky while they cry?
So why shouldn't they be there for you? This is your time...The time that you need them...be grateful that there are people around that love you and Ask For Help.
I used to say that it wasn't fair that after everything that I had to live through why did I also have to deal with acne, boyfriend trouble, natsty teachers and measles??? Couldn't I get a 'get out of jail Free' card for the rest? No such luck...we are the stong ones, the chosen ones (please, stop picking me!) who seem to get all the Sh-t...I know, it feels like that some times but soon, hopefully it will be over.
hang in there, and yes, try eating less at night, it may help
Sharon

Oh honey -- as Sharon and Mariann have said, we have tear ducts for a reason. I can tell you that I experienced more emotion after take-down than I can even express...most of it wasn't postitive. I had a 3-step and for 8 weeks prior lived with an ostomy, so I had this huge expectation that I would be right back to where I was prior to being diagnosed with UC 16 years earlier. Umm, holyrealitycheck! Your body has been through an incredible amount -- and is adjusting and will continue to adjust for quite some time. Just know that most of us have been there and a great deal of us are now on the other (great) side. For me -- it was all worth it. You are brand new to this and everything you are experiencing emotionally is normal. Give yourself permission. Be honest with your doctors and have realistic expectations. Also keep coming here. You are not alone! Hugs.

Yes...normal to cry and be overwhelmed. I took valium for the first few weeks. it helped. But don't forget you are also grieving the loss of your colon and dealing with major life changes. Pain meds can make you very depressed too. Take it one day at a time...it is normal.

I can SO relate to your feelings and this post! I am just now 1 year post surgery. I had a one step, but none the less...I thought I had gone crazy with all the emotional outbreaks I had while recovering. I'm a pretty laid back and even person in my "normal" life. After surgery, I swear to you I had no idea who I was. I kept a blog and luckily it has now become funny to re-read back over all of my fears and emotional outbreaks because I'm now "me" again. I don't have an answer for why it happens or happened for me. BUT, I can say this...once I was healed and "past" all of the stuff that happens post surgery, the adjustments etc...everything you are talking about...and your life gets back to some type of normal life...you will be fine.

I had to ask myself so many times why I was reacting this way, why I couldn't stop crying, why me, was this my new "normal", why my butt was burning, and I definitely had times I just didn't want to eat at all so I didn't have to feel the effects. Just take it as normal for now and part of it. You'll be fine in a few more weeks/months...depending on your recovery. Try to see the end of the road and not the journey you are now on.

*HUGS*

I had one good long cry several days after my colon got yanked. It was a wonderful release of emotion that had been building up (I'm a guy).

Even still, for the next six months, my emotions were all over.

But the one thought that really settled my emotions and nerves was to think long-term. You still have to deal with the day to day stuff, though.

JG has a mentioned an idea that I wholeheartedly recommend- writing a blog, or even a diary. Doing this can help make sense of what you are going through. My journal is to 55 pages.

Writing in it and occasionally reading it has been a great help to me emotionally.

PM me and I'll email it to you.

I feel your pain tonight. The butt burn is unbearable. I haven't started crying tonight, but I am definitely whimpering and crying out for divine intervention!

Gas-X helps with the spasms. My bidet isn't a perfect fit for me but I think it is better than not having one, although I still take 2-5 hot baths a day.

I can deal with everything right now except the butt burn. It's pure hell especially when you have just coated your bum in cream and have to go back to the bathroom. You are not alone, I am hurting right along with you!

I'm still waiting for someone to answer with the magic cure for molten lava fire ant bite butt burn.

BTW, I just took a percocet because I couldn't handle the pain any longer. Yes, it's that bad!

gleam, we will get each other through this. i started taking a citrucel caplet with every meal per my surgeons request and my butt burn and my night were definitely milder. im usually suffering by 9pm and tonight i had one bad hour instead of 2 to 3 and the butt burn was close to non existent til my last wipe at which point i took a dilauded. i rely on imodium for the spasms. how does the gas-x work. also pepto caplets have reduced my gas i believe because it acts as a mild antibiotic and controls the gas producing bacteria population...

It was normal for me to shart my pants every night, but no crying. Hope things get better for you. I'm 8 weeks out from takedown and feel great! I still leak about 3 to 4 times a week at night (leaking is a nice way of saying crap your pants a little), but I don't see this as a major problem. It is annoying though.

i never leak but im ready for the butt burn to go away. can also do without the going fine all day then all of a sudden im straining and cant go seeming to trap stool and gas for a few hours late night into the morning.

quote:

Gas-X helps with the spasms.

I only wish that was the case. Gas-X, Beano and Charcoal have all failed me. None of them were designed for a small intestine alone

quote:

i never leak but im ready for the butt burn to go away. can also do without the going fine all day then all of a sudden im straining and cant go seeming to trap stool and gas for a few hours late night into the morning.

that is exactly how my pouch behaves. i don't get it at all??? some bathroom trips are "easy" and "fine", and other times, I'm straining and poop feels stuck!!! I don't have a stricture anymore either. Have you been checked for a stricture? Now that I no longer have a stricture, I am not sure what could be causing this. I'm guessing adaptation + diet + hydration levels + adhesions ???? everyone says it should get better still, and i'm relying on that for my mental survival!

this also happened before my takedown just passing mucus so my surgeon scoped and pouchogramed and gave it an a+ rating the day before takedown. no strictures etc. i believe its a man made system that is not yet communicating with the rest of the body until it matures much like other surgeries scars or disruptions to the body and in my experience none of them are matured/healed before the 12 month mark. i truly believe that but tonight when im struggling i will sound like a different person pleading for answers. what i dont like is sometimes i cant stop an urge to push that turns into a strain. that just doesnt feel healthy. this is harder the dealing with colitis but many have confirmed that this is normal and in the end they are pleased. im banking on that...

Oh hell honey, yes, for me, my emotions were all over the place! Being a man, we are always taught big boys don't cry, who says?! Guess I'm a little girl inside! I remember before my colon rupture, 23 years ago when I was only 20, I would cry myself to sleep almost every night, completely distraught, thinking I'd never feel good again. Same after my toxic mega colon. I had a three step j pouch, did a lot of crying, sometimes from the pain, sometimes from depression. It does get better, I found as my body healed, so did my soul. I just went through it all again this summer, j pouch and rectum removed, and a K pouch installed. I was in so much pain I couldn't stop the tears, or the pain, but, I'm four months post op and am back to my good old miserable self! Lol! You'll feel better, I promise, if you find it's lasting longer, get to your doctor, I started anti-depressants, best thing I did, really helped me. Now, chin up, things will get better,

Sending healing hugs,
Eric

Chasingtime, Gas-X is an antispasmodic medicine. I guess it sedates your small intestine/jpouch. It has been my go to cure for spasms.

Today was a great day BM wise until this evening. The butt burn is back and like you sometimes a small push turns into an out of control strain.

Standing and sitting and standing and sitting in the bathroom helps me a lot to feel more empty, although i'm never empty.

Also like you, I had my entire digestive tract inspected two weeks before takedown and got an A+ from Dr. Wexner at CC.

Thankfully the only times I have had an accident was due to trying to pass gas. I've had a lot of luck with that recently and haven't had an accident in a few days. I'm starting to feel when I need to stop trying to pass gas and hit the bathroom!

gleam, how do you pass gas? everyone says while laying down but im afraid to try. it would be so great if i didnt have to get up all night because of gas. my guess is the little stool that comes out could wait til the morning if it wasnt for the gas constantly causing pressure and discomfort...

I can certainly understand why any woman would cry over all the frustration a J Pouch would bring. For all these years I've had one, I've done nothing but cursed it out and felt nothing but regret for choosing the surgery. Just trying to get some sound sleep last night was enough to make me curse out my pouch, again

i think chasingtime is a man, not a woman, but it's still perfectly normal and understandable for ANYONE to cry after everything we've been through! we wouldn't be human if we didn't feel the physical and emotional pain, be moved to tears, and question our sanity and strength. we would be like boring cyber robots!

i am a guy and not ashamed to admit i break down often. honestyishebestpolicy, i am hurting from the discomfort of the takedown being 21 days ago and need to remain hopeful that im not cursing my pouch in years. i welcome your input and i appreciate your honesty but i am also hoping to be encouraged that even though i feel hopeless right now i have a good chance and good odds that i will be a happy poucher in the months to come.

quote:

i think chasingtime is a man, not a woman, but it's still perfectly normal and understandable for ANYONE to cry after everything we've been through!

Agreed, I'm sorry about the mix up. Living with a pouch is enough to put anybody into tears. The one time I was in tears over my J Pouch was the first time it dehydrated me and landed me in the emergency room. I had no idea what was going on with me at the time. Sticking me with a intravenous did bring instant relief though. At least I know what's going on now every time I get dehydrated, thanks to my lousy pouch. I do guard against it as best I can now, since I understand how easily it can happen with a pouch

I'm so sorry for all the pain you are going through now. I'm almost afraid to say that I'm one week post take-down and really not having any problems. A little gas pain (mostly at night), and sometimes feeling like I didn't empty all the way (and actually do find myself back in the bathroom shortly after to go some more), but overall doing very well. However, between steps 2 and 3 life was very, very difficult, painful, and emotional for me. I know I was very depressed. At one point I told my husband that I quit because it didn't seem to matter what I did to help myself; things just wouldn't get better. I started to physically feel better about a month or so before step 3, and sure enough everything else seemed to get better, too. I like how someone put it, "when my body healed, so did my soul". So, I don't know what you are going through right now, but I know the agony I've dealt with in the past. I think I just want to encourage you to listen to the people who are veterans here who are doing well now...which I know you are reaching out to and listening to. Sometimes they are going to have specific tips to help, and sometimes it seems the best tip is "time will make things better". Not that they haven't had hurdles along the way, or that they won't have an obstacle down the line, but that there is a wide range of what is "normal" after the take-down surgery as far as I can tell, and you do seem to be on the tougher end of that range right now. Anyhow, keep sharing your feelings and experiences here...better out than in, and those who genuinely care about the success of your jpouch in the long run will be here to encourage and support you until that day happens for you. I will be remembering you and others struggling in my thoughts and prayers.

thanks dove. i think sometimes its how you deal with the problems that defines success or otherwise. i guess i just didnt know what to expect and i am so severely depressed. my family and friends who have watched me struggle with uc and now this think im strong but maybe thats the problem. im so sad and distraught than even if i am doing well in the grander scheme of things its taking a major toll on my discomfort threshold. my days have been good but when the multiple trips begin and the butt burn and anal muscles get aggravated i fall apart. i think i am not as strong as most believe. there are times when im grateful to feel as good as i do listening to some stories but i think im so spent that i fear anything that calls into question my future success. i cannot fail or i truly believe i wont make it. not enough left in the tank so to speak...

chasingtime,

I have seen on this board of a few others not doing well with their J-Pouch. One just had a K-Pouch, another is living with the bag and others have used BCIR.

The posts I have read from K-Pouch and one wearing the bag, they are completely happy now rather then live in misery with their J-Pouch.

You shouldn't have to go through life being miserable from being so sick.

Perhaps these options do not appeal to you. However, if I were you, I would respond to them, or send them a private msg just to get their input on this.

I would investigate these other options that are available to you.

Be careful of the negative comments on this board. Do not fall into the trap these comments ARE NOT helful. They are not. They do not help you and in fact, will make you more miserable.

hi rocket, im only 21 days out and in no way do i feel the need to look at other options. i just wish our docs would spell it out for us when we leave for example, the first few weeks or months maybe very difficult and uncomfortable so dont worry unless this or that happens. when youre in the middle of a rough night you feel like youre the only one dealing with this and no way others have felt this bad but thats not true or fair. some of us can handle discomfort better than others. i could be doing better that another guy who is handling his discomfort better and im sure my depression isnt helping. i know its depression when i start to sob, not just cry but full on sobbing. i feel pathetic atually and im not too proud of myself lately. my daytime self would like to kick my nighttime selfs ass but again when the 4th bathroom visit hits and my butt is on fire the 8 year old me wins out. i wonder if some of you could experience my issues if youd say hey pal you got it good and count your blessings. i hate the unknown...

chasingtime,

I didn't read when you had the surger so what you are saying makes sense.

I was under the assumption based on the negative posts that you have had the J-Pouch a very long time. That person has had the J-Pouch for at least 20 years and has posted before under a differnt name and was kicked off.

That being said, its going to take time for your body to adjust to a new life. What you are experiencing is normal, but if you are not comfortable with that, contact your surgeon.

Try to stay as positive as you can, as hard as that may be.

Rocket

thanks rocket!

Chasing Time,

You are still very early post take-down. I would consider what Rocket said if things were not better in a year or so. That's just my personal feeling; it's what I told myself when I went into the take-down a week ago. I obviously lack any real experience or time in my jpouch at this point, so I'm not really helpful there especially considering I'm not having any real trouble at this point. I really do feel guilty for saying that, but I don't take it for granted I seem to have fallen into the lucky category at this point.

I think we do get labeled strong and inspirational by many who watch us go through this ordeal. Truth is, we are strong...you are strong. But, you are human, and you are struggling right now and could use the help of this group (heeding Rocket's comments about the negativity...sadly, it exists), your doctors, your family and friends, and maybe a psychologist. Again, time may be what it takes. But in the meantime, I recognize that you are spent as you said. I really feel for you having been there more than once this past year. I'm sorry I don't have any real advice, but just want you to know you are not alone.

runner4499,

Thank you for your reply.

To reiterate, PLEASE IGNORE THOSE NEGATIVE COMMENTS.

Rocco

"HONESTY" - you didn't thoroughly read chasingtime's post, and took his quote out of context. Here is what he actually said.

quote:

im only 21 days out and in no way do i feel the need to look at other options

thanks for catching that runner. that was shady and makes it easy to ignore negative replies from now on.

chasingtime,

Great reply to the negative replies. I couldn't have said it better myself.