Pej, I'm sorry you're going through this. Have you been told what, exactly, is causing your pain? I can't tell, for example, if having your pouch reconstructed by an expert might help.

Is your depression being aggressively treated? It critical to try to get that under control, to enable you to to have the emotional strength to tackle everything else.

 I do have to challenge your weight gain explanation, though. It's certainly true that exercise burns some calories, and it sounds like you previously enjoyed a lot of exercise. Nevertheless, weight gain suggests that you're eating more than your current activity level consumes. This is a challenging problem, and interacts with depression, but you'd be better served thinking of your weight as a consequence of your diet than as a consequence of your lack of exercise.

I feel for you; it's so unfair what you've been through at your young age. I second what Scott advised. I just wanted to add that many of us (including me) on here have experienced depression stemming from our physical/medical situations. One reason is that we feel like we have no control and another is feeling like we're failing - ourselves and those we love. What helps tremendously is having a plan, like "If this situation is unacceptable, these are my options. How do I feel about each option? How would this one make my life better? Who can I contact to find out what to do next?" Having a plan (or several!) keeps you moving forward.

I opted for jpouch removal and an ostomy because I couldn't deal with the lack of control regarding how I was going to get through each day and how it was making me feel emotionally. Think about what makes YOU feel happy, feel complete, and then think about your options, and then work towards those. I know you wish you could be where you were. We all grieve and mourn losing that. I was SO healthy before UC hit me, I bragged to the nurses that I had veins like Madonna, donated blood all the time, wasn't on any meds....and I had to let that go because I'll never have that back and missing that was making me so sad. But letting that go helps us focus on our available options....

peji911 posted:

I am 33 years old and when I was 18, I started feeling the symptoms of Ulcerative Colitis. At the time, I was very fit. I played soccer, football, swam, and ran for my school. However, I started bleeding from my rectum and feeling tired all the time.

By 22, I was on so many drugs I can’t even count – nor do I remember what they’re called, for the most part.

By 24, I was taking oral steroids. My UC was so aggressive that I was taking steroids (I think it’s called Prednisone) three times a year (starting with 8 pills and dropping).

I had my large intestine removed at 29 and when creating a j-pouch, they messed up (their words) because they took too much of the rectum. Further, I have a large abscess that feels like I need to “catch” a BM, or else I get extremely gassy and in extreme pain. This will last for days.

A year after surgery, I had my bag removed. However, my diet is brutal. I can no longer eat health. In fact, if I eat vegetables, especially any greens, I will be in pain for days, to the point that I can’t physically do anything.

Further, I got a major hernia because I lost a lot of muscle and apparently, my frail body couldn’t handle the muscle I already had – plus, obviously, the holes from the surgery.

Anyways, I went from 185lbs with 6% body fat to 235lbs withGod only knows how much body fat. After my surgery, I injured my back because my body couldn’t handle my new weight and now suffer from DDD (Degenerative Disk Disease) meaning that it’s very hard to exercise.

I NEED a proper diet. But how, if my body rejects vegetables and most fruits? Even boiled, I struggle to eat veggies. Is there anything I can do/take for the body to accept veggies? This has led to pouchitis every few months and I am very worried about needing a bag for life.

I have slipped into a huge depression. I have a wife of 3 years (dated for 8) and an almost 2-year-old toddler. The depressing part is that I can’t even play around with him. This makes me realize how big of a failure I am as a father and feel that he would be better without me – if not now, in the future.

If I cannot get my diet in check, I think that I might take my life. I can’t live in pain for much longer. I have no idea what to do. It’s devastating circle – I can’t eat properly so I gain weight; because of my weight, I cannot exercise without being in pain; because of lack of exercise, I am getting bigger which means the pain is greater, etc.

Has anyone gone through this? Is there a diet for this?

I don’t know what to do anymore and feel that I will be biting steel if I cannot get this figured out. The pain is too great. I know it’s selfish but having a father/husband constantly being a vegetable is worse than having one 6 feet under.

Any help would be great. Please.

This almost echoes my Post Ifeel for you buyt you are not alone my friend

Thank you for the replies. I wish there was something we could take that could allow us to eat properly (veggies, fruits, etc). I struggle with all of that.

Further, I constantly get pouchitis and have to take flagyl, which is brutal. If somehow I could do something to avoid pouchitis I would be through the moon.

Everything is soooo difficult.

The sad reality is that doctors don't know jack shit about Inflammatory bowel disease. Don't let the white coat and all the technical terms fool you. At the end of the day, doctors are implementing a standard treatment plan that is designed to FAIL!. I mean when was the last time you heard of a patient who got well with a medication?. These drugs don't do anything but cover the symptoms not to mention the awful side effects they give you. They just throw every drug they have at you until there's none left. Then they say "well we don't know what to do, so your colon has to come out. Trust me it's the best thing for you." When in reality they know that this will not make you truly better and it's actually trading your current illness for something else. I mean you can't just take out an organ and expect everything to be totally fine. I learned it the hard way. Well, I would say that the doctors screwed up. it's not your fault at all. I woudn't suggest you commit suicide because they're are thousands of people in your same position but you just haven't met them. But they do exist. And you will cause more grief to your family trust me. I say you walk back into your doctor's office and say, "You screwed up and lied to me!. My life is horrible!. Just hang in there. there has to be a solution.

Feel free to pm me and chat as im going through it now myself its a lonely place but id love to chat and work out ways to get through the tough days

Pej, how is the Flagyl brutal?  If you don't tolerate it well there are other antibiotics that can be used to treat pouchitis. 

Scott,

It has stopped working as well as it did so I am on it more often. I'm usually more fatigued as well. 

We shall see what happens. 

Hello, Peji911.

For vegetables and fruits, can you blend them into soups and smoothies? Take the vegetables that you like to eat and cook them in chicken broth (canned is fine if you don't want to make your own broth), allow to cool, then use a stick blender or regular blender and blend until very smooth (takes a minute). Add more broth if too thick. You will still get the nutrition of the vegetables, but the fiber will be well broken down and won't put more pressure on your inflammed pouch. For the fruit, blend them into a smoothie by adding frozen chunks of fruit to soy milk or coconut milk and put into a small blender for 15 seconds at a time, pulsing until smooth. You don't need to spend a lot on a little blender for smoothies. I got mine for $15 on Amazon. Have it for four years now, still going strong, crushes ice. Try smoothies and soups and see if you like it. 

Peji, if you don't have one already, I would strongly suggest getting the help of a therapist who deals with chronic illness. Mine was literally my lifeline when depression, anger and fear were scrambling my brain. She wouldn't let me wallow for too long in my misery and kept me present and active in decision-making.

Thanks for the replies.

Will blend my food and see my doctor about a therapist.

Thank you

I can only say, I am sorry and I understand...after a lifetime of hell, I got my k pouch at 18...I had had practically no life previously and was thrilled with the freedom that I discovered (I still had some potholes along the way, quite a few surgical fixes of the pouch, the valve and eventually lots of hernias)...I was finally able to live.

There are all sorts of 'outs' that you can take...none of them include biting steel...you are in what I call a situational depression...the situation that you are living in is what is depressing you...Take away the situation and the depression should lighten up too.

First off, your diet...Yes, to the stick blender...a must for anyone who cannot eat fiber but wants fruits and veggies (great for your son too)...mix it up,  experiment, throw in probiotic yogurt with some fruits, almond milk or coconut water with veggies for creamy, low-cal soups...

Buy some protein powders and add them in.

Your weight will come off quickly on this diet, the back pain will ease up as your weight goes down...probiotics help with the pouchitis (not a cure but surely helps).

If all else fails you can have the pouch out...end ileos are the most likely alternative but there are others...A pouch redo, a k pouch or Bcir where you have a tiny abdominal stoma and you are 100% continent...you can eat most foods too and you tend to get less pouchitis.

Don't go down the dark elevator shaft of dispair...you have choices and options...you are not alone...Take it slowly, fix little things at a time and you will be surprised how quickly things get better.

Sharon

You are not alone.  Im 43. Your story sounds like mine. Was diagnosed  with uc in 2006. Took all kinds of pills including  steroids for four years, gained 80 pounds  then  everything  stopped working. In 2010 had my colon and rectum removed and had a jpouch formed all in one step. Worst experience  ever. Lots of complications, had to stay at hospital for 17 days. I've  had chronic cuffitis and pouchitis  for the past seven years. In 2015 had a hernia repair twice. I take Tylenol three for the pain, lomotil, bentyl, cipro, flagyl, Entyvio. Im putting off pouch advancement surgery. I'm  also diabetic, have a large herniated disc, im going deaf, got glaucoma. I'm  bipolar, with really bad anxiety. I take an antipsychotic and antidepressant which helps my depression. I have more illnesses all happening  at the same time. Because of all the illnesses  i have lost my career, my car got repoed,and now I'm  stuck working at subway. I've  never been married and no children and I don't want any. I wouldn't  be able to care for them and if i never get married i am also fine with that. I  don't  date. I just take it all in one day at a time and pray that I  will get better. So don't  give up just yet. You have your whole life ahead of you. Your  family  needs you. You just gotta find the right medicines and food and speak to a therapist.

As others have said, I can also relate.  I have had my J pouch for 12 years and most of that time I have felt like crap.  I've had pouchitis that was treated with Cipro and Flagyl, only to have the Cipro cause joint pain so severe I could hardly stand.  I hate flygyl and have tried to avoid that as well.  I also had/have difficulty with fruits and vegetables.  Yes, blending them helps, and I also purchase natural baby food at times when my pouch needs a break and I don't have time to prepare my meals with a blender.  I can't eat protien shakes because it burns like crazy coming out.  I can't eat wheat because it also causes butt burn and bloating, most seasonings upset my pouch (pepper, fresh herbs, etc ) and I can't eat dairy without Lactaid enzymes. (even then I experience increased bowel movements).  I end up depressed, low energy and eat crappy food that I know increases the amount of trips to the bathroom.  I plan my life around bathrooms, and even though I can still function well enough if I know there are bathrooms near by, I find myself not enjoying most activities, because I am always concentrating on not having leakage (which happens frequently at night) or stomach aches from not having a bathroom near by.  Not to mention I feel lethargic because I am not eating well.   I even went as far as having a gastric sleeve surgery done, thinking it would help me eat less.... epic fail.  I ate less, but still ended up eating crappy food like pasta, white breads, white rice, etc.   I know I need to be more accountable and just concentrate on breaking the cycle.  I'm sure that with a lot of effort I can find some balance in the diet and eat better while maintaining the amount I eat to a minimum.  The problem is I am so tired of constantly fighting the battle.  My life revolves around the bathroom and I never feel like I can get a head of it.  I also know I probably never give it enough time.   It's a vicious cycle... But every day is a new day and maybe today will be the day I fight a little harder and start breaking the cycle.

Misery loves company PEJ, I'm sure there are many others going through the same or similar circumstances.  Maybe we should support and challenge each other to make some changes that work for us and see where it leads.... It couldn't hurt, right? 

Thanks again for the replies. 

It's crazy, isn't it: hearing other people's struggles helps you because at least you know you're not alone in this world.

I will try the blender, like I said, and see if that works. Ever since the steroids, I always feel hungry; sometimes even after just having a large dinner, which I know I shouldn't. Once those "hunger pains", or whatever they are, go away, I feel as though my dieting will improve. Let's hope!

God bless all of you!

Pej,

Sometimes those hunger pains just after a meal are not hunger but thirst...our brain sort of rewires itself when we are sick and the lines get crossed...We do not know how to recognize when we are full and the desire for fluids (coke, beer, wine and other juices and soft drinks do not count...Sugar and alcohol make you more thirsty, not less)...We need more water and lots of if to kill those hunger pains...I also have the problem and confuse salt cravings with hunger too...what I should be doing is licking a few grains of salt and drinking some water...instead I pop a few handfuls of peanuts and am still hungry afterward...

If I just drink a huge glass of Ice water, I feel better all around.

Sharon

I have read all the posts here, and we sure have been through a lot, haven't we, having been given what seems an extra large dose of pain to carry in life. I have been there a few times, coming close to ending the pain by my own hand. I still struggle at times, but for me it is so important to surround myself with a strong support group--this is a good place to start if you don't have one otherwise.

Friends, family, community, sometimes you have to turn up a few rocks to find them.

The other thing is looking inside yourself for all the little things that might bring you joy in life. Do those. For me it can simply be sitting on the balcony and stopping to really listen to birds singing, or hearing the laughter on the street below, or being in nature and letting it speak to you--it has a lot to say! It's in a good song (I play the song over and over, "I'm Alive" by Kenny Chesney, a lot!), a meaningful book, a back rub or massage, or sitting under a tree and feeling the breeze across your face, a lazy meandering drive through the country when you're up to it.

It's not the answer to everything, but whatever you can find to alleviate the stress of your illness and pain, whatever you can do to help heal all the trauma you've been through--and it's been a lot, can contribute. I have to find ways to accept the place where I find myself while still looking for answers. Accepting myself just as I am with all my body and bathroom issues has been difficult and has taken some doing to get here--I still struggle, but i'm getting a lot better now after so much practice. Whatever it takes, I suppose even in the middle of all the physical suffering and pain.  Even allowing yourself to say, I feel really shitty today and I am going to allow that, be okay with myself today can sometimes make you feel physically better. I might need to say that 100 times in a day. It's a practice. I don't have to try to talk myself into it now as much as I once did.

The other thing I do when I am feeling really bad is listen to comedy radio when I can or watch a funny movie. Whatever makes you laugh. I know there are still good moments to be had in the middle of it all. We have to find ways to stop and notice them, take advantage of them. Writing them down, writing your feelings down helps, too. It gets it out of the body and on to the page.

I am 65 and have been dealing with this stuff since I was in my early 20's shortly after getting out of the military. I'm still here, and I am so glad I waited it out and stayed. It's not been easy, but I've made the decision to work it through whatever it takes. And my life is rich and full in ways people that have easier lives will never know or understand. 

For what it's worth, I hope this helps a little bit.

Thanks for the replies. It's very therapeutic to know other people have and are going through the same issues, but still enjoying life.

Thank you

Sometimes we feel completed isolated, but just know we are a browser away, my man.  You ain't alone.  Not an easy road for anyone.  I'd like to think we were chosen to bare this bullshit because we are the strongest.    

I am a stubborn (probably from my southern italian roots lol) and always felt, like you, that a man should be the provider and any sign of weakness was just not acceptable.  It took me a very long time to actually come out and admit that I needed friggin help.  I couldn't go through this entire process without my friends that cared as well as my family.  

Believe it or not, people actually do like to help.  As much as we think we are a burden, the people that care for us will go to many lengths to help and protect us.   Obviously you don't want to sit there with a bell ringing it for every little thing .

Keep your chin up.  If you want my opinion ... I would definitely get a therapist, (shit I may just get one myself) and maybe find a nutritionist or ask your doctor how you can start modifying your diet so you can get yourself back on track.  

- A

Yep. 

Your gut if messed up. Runs your life.  And mind. 

Those that have healthy ones will never understand how overpowering it is not to be able to just simply poop normally. 

It is devastating if you cannot find a middle ground where we can get it under control.  Mentally and physically devastating. But we have to find it. And for some it takes a long time. And the longer it takes the more of a toll it takes while getting there. So I look back and see that. I found my place. 

I hope you and all others here can. Once you get there. You know.  You will know. It may not be what you want or think it will be. But. You'll know and be ok with it. 

R. 

Wow -- you guys are awesome! I will flag this and remember to read it myself when I am sucking under. So many great suggestions for foods and beverages, etc. and so much support :-) It helps to hear I'm not the only one with these problems, trying not to suck under, and that we can all find a way to make it through those dark days.

PEj, I am glad that you reached out and recognized you weren't handling this well. It is so good to ask for help and it is, in and of itself, a sign that you know you can improve your situation. Don't stop trying!

For a proper diet: Look for a referral to a nutritionist with experience with IBD/pouch patients. Also local Whole Foods and other health food stores often have visiting specialists/nutritionists run programs at their locations -- check your local community resources as there is a lot available for free. If you can't find live help, look here and elsewhere online to get more info on "how to." You can blend things into smoothies, try juicing, get high-quality, easy-to-digest whole food supplements, etc. Just do something soon as this will impact your mood positively!

For depression: Get a Counselor/Therapist and try antidepressants (certain pills often have the added, probably beneficial in your case, side effect of curbing appetite.) Don't wait -- turning things around might take a lot of effort and support at first and doing these two things is a great way to ease the load on family and help you kick start improvement.

For Pouch: Ask your doc about trying Cipro for pouchitis (don't read the warning labels, it sounds like you need help now and I and many others have taken it for years for chronic issues.) Also, seek out medical alternatives to your situation ASAP. Lots of us go through hell trying to make pouches work only to find out we are better off without the damn thing! I'm not having fun intubating, that's for sure, but I'd take it over anything else I've tried the last 6 years.

So many have been where you are at and struggle to continue fighting the good fight. I look at my husband and sons and force myself to think that they just need me to do something positive, anything to move forward. They do not want me to look at them and cry because I am not doing enough. They want me here and not six feet under. Would I want my son to think his life wasn't worth saving? NO! But that is what I would teach him by taking mine. Would I want him to think it's okay to quit when life is difficult? NO! Would I want him to think I didn't love him enough to endure whatever I had to to stay with him? HELL NO! There is simply no alternative. If you focus your love on what is most important you will see that to fight is your only choice. You've got nothing to loose and everything to gain!

Sending prayers that you find help and better health, God bless -- Jen

I just want to send you a huge hug �� and tell you that you're not alone. It's so incredibly hard some days but don't give up. Your little family needs, and no doubt loves you dearly. So many of us here understand and extend our hands in friendship and support. You can get through this. XO

The plethora of positive responses on here is why I love and cherish this forum. So many of us go through tremendous pain and hardship at different points in our lives, but through it all, we're always at our strongest when we stick together and support one another. Many a two cents have already been given, and I'd be grateful for the chance to throw in mine.

So here goes: Pej, stay strong my friend. Plain and simple. Life is so mysterious, and we often find ourselves wanting to ask why we should have to continue to bear what feels like an unbearable load. But there really isn't anyone out there who can give us the right answer. In the grand scheme of things, anything that happens (good or bad) to anyone on earth is only temporary and completely relative to everything else that happens. I take solace and comfort in knowing that whatever my suffering may be today, it simply cannot possibly last forever. Moreover, having the experience of suffering itself is the only reason we're able to fully enjoy the experience of pleasure. Simply put, if we never suffered, we'd never know what true joy was either.

Pej, I hope you're able to find comfort again soon, and I'm no more than just another individual who will be thinking/rooting for you in the mean time. 

Pej I too am having a horrible time with my j pouch but I'm six months post takedown. I hope it gets better for both of us. This website helps me to not feel alone so I'm glad it exists.

Hey Peji, Hey all, Hang Tough and find the small positives. It is for sure that a 2 year old toddler will unconditionally love you as you are, no matter what, it is better than six feet under! Lot better! Same goes for your family and friends!! Much better!

My wife had surgery now almost exactly 2 months ago and she is in pain and depressed, not to the extend at this stage as you Peji, and many other fighters out there, but still, its not good, and it is tough. We are going both to doctors treating the physical pain/condition and now have had first visit to the psychiatric side. Med´s received  both for pain, and to raise the pain tolerance to get away eventually from the pain med´s.

So far my mindset has been focused on the healing, and it will get better, but now that I read this post, I see I will have to adjust it, and accept that it may  be a long process, and there is no evidence that everything will be better. If that is the case, I will need myself to mentally start to prepare for that option and accept it as part of life. If this is the case, I feel its even more important to find for me and for my wife the small things to enjoy. I assume, this will be very difficult at times, almost impossible, but I know we need to try.

Peji, for your nutrition, can you tell a bit more about your eating and drinking, how do you go about your day? How much and what type of food and drinks? It may be that body rejecting vegetables, is not the end of the world as we see it (U2), it may be that it is your head convincing you that you have failed as you can not. Anyway, tell a bit more, lets put it into a glass jar, look at it from a distance, and then see for more.

Thanks for this great post and also all the great replies, I will post on my "help needed urgently" an update how are things at our side.

Take care you all

P

Not a whole lot to add to what people have said here. I can relate - although things did get better for me over time and experimentation with foods and supplements. Biggest gains for me have been through: fiber with each meal, and Prilosec once a day (reducing the acidity apparently not only reduced butt burn but changed the ph of my gut and resulted in better gut flora). Not sure if the sulfasalazine helps that much, but I know it also helped some when I first started back on it.

Depression - I went through that after my takedown - I had a 4 year old at the time. She was usually the trigger for me - because like you I thought, "I can't even play with her without having to get up every 10 minutes." But I guarantee you your son will be thankful for just having you in his life. Don't underestimate the importance of being there! What got me past the depression? Prayer, friends, and getting to the point of "acceptance" (in quotes because I still didn't like it even if I accepted it). I finally said to myself, "Well... if this is the way it is going to be for the rest of my life, so be it. I hate that idea, but I will accept it and move on." Not an easy thing to do - you are grieving loss - not too dissimilar to losing a loved one.

The other thing that caught my attention: I too was in the best shape of my life before surgery. I used to get upset about it. But at some point during my follow up with my surgeon she said, "I think what saved you was that you were in such good shape." I was moaning about losing the best shape I had ever been in, instead of being thankful that I was in such good shape before I got so sick. It probably saved my life.

Steve