About ready to just give up...

[JTFusion]

I've been struggling with Crohn's since I was 15. (32 now) I've had my Large Intestine removed, J-pouched, and now I've moved on to a Stoma with a very large hernia next to it. (and the infection/flare up in my J-pouch, that I had back in 2011 is still going on)
I've been a regular face at Mayo Clinic, had horrible allergic reactions to Remicade, and a few others. I work full time, but at the end of the day, I'm too exhausted to do anything with my kids. By the time the weekend hits, I'm done. (I used to be a big outdoor type of guy, with bike rides, canoes, camping, etc. but I can't even ride my bike 2 miles now without feeling completely winded...I used to do 25 on any given day easy with my wife.)
I look completely exhausted, lost more weight then what I should have, and fighting some depression/anxiety/and those "other thoughts" that come with the medication.
It feels like I'm running out of options. I feel like I've reached a point where one day, I'm going to get really sick, and not bounce back. I just don't know what to do anymore.
Any helpful suggestions are welcome and thanks in advanced.

JT

 

[emmaw]

JT, I'm so sorry that you're feeling like this. This disease is very cruel sometimes. I don't have the answers but dig deep, keep your family in your thoughts and don't let it get the best of you. Lots of luck to you.

 

[worriedboy]

Sounds to me you are a brave guy who also mananged to raise a family, work, train and live full life side by sidevwith the disease...

I understand you are going through tough times; please please dont lose hope.
Sometime we just need to accept that we are going to be "out of the game" for a while, and handle it a day at a time.

I guess that being a Mayo clinic patient you have been demonstrated to clinical trials ? There are some very interesting options which are not just other anti-tnf-a that looks you cannot tolerate.

In the meanwhile - small achievements.
Dont forget that you have been able to reach to where you are now; it's a bump in the road but you will get back to yourself.

All my best to you...

 

[24601]

I can empathize with the feeling of running out of options and the exhaustion.

Have you had any recent tests to measure how well under control your disease activity is? Might give you an idea of whether the fatigue and weight loss is from the infection or active disease. And if it is active disease it sounds like you need to adjust your treatment. What meds are you currently on?

Also I know the Mayo clinic has an amazing reputation but even at a renowned center you need a doctor who listens to you and pays close attention to your symptoms and uses those as a guide for your treatment. Do you feel like you are getting that? Because for some of us without that close monitoring of our disease we can get to the stage where we just don't bounce back too well from the state our guts get into. Your concern in that respect is valid.

I believe that there are stem cell trials where having a stoma is not a bar to eligibility so perhaps if your infection was under control but the disease activity isn't then that would be an option.

 

[JTFusion]

Thanks, it's just that this has been going on since end of Summer of 2011 with this battle. I had a Manager who came up to me and asked if I've ever seen the show "The Walking Dead"...I said "No, Not really, Why?...He replied that I "looked like one of the characters, and it wasn't the ones that everybody was cheering for." (He's actually a VERY good friend of mine and if anyone else would have said it, it would have hurt a lot more then what it did, but he said to get me to smile. He knows what I've got, and he's always been supportive of me. Basically that was his way of encouraging me to go to the doctor...again.) During that time of 3 months, I dropped from 175lbs to 131lbs. My clothes became a little baggy as well from the weight loss, so that didn't help any.
I've tried the Remicade, Humira, and one or two others. But these have something that shares something with a mouse compound (???) and that seems to be what the doctors have determined to be the reaction that I get. I really just don't know what to do anymore. I keep hearing "this too shall pass" from everyone, and I keep smiling and saying "Yup, you're right", but inside I'm saying..."When? It's been going on since 2011." I was reaching a point where I say in the hospital for at least a 4 days at a time, once a month from October 2011 to March 2012. (On that note, I did become a Semi-Pro Movie Critic, as I watched just about ALL the movies that come on their TV program...I'm clinging on to my humor as best as I can)
Right now, I'm one a really low dose of Prednisone, but that has caused me to have a few large panic attacks, (and a few of them happened at work, so I had to get out of the building and into my car) I don't do well with that type of med either. I've tried everything that I can think of and things that people have suggested from different oils, to changing up my diet drastically, and everything in between. I'm reaching my ropes end here...If anyone has any ideas, or suggestions, SOMETHING, please share. I may not have tried that yet, and that could be the cure of all cures for my body to respond too. Thanks again, and thanks for letting me vent. People who don't have this try to understand, but even if they get a REALLY bad case of the flu, they don't know the 15-20 times a day bathroom visits.

 

[wild_one353]

here are some more options.

1.marijuana. see the treatment section for more info. also on the crohnology.com website their are alot of good testimonys, some people traded all their meds for marijuana and never looked back. you will want a strain with equal amounts of thc and cbd, or high in cbd.
2.fecal transplants. see link below.

 

[JTFusion]

I can empathize with the feeling of running out of options and the exhaustion.

Have you had any recent tests to measure how well under control your disease activity is? Might give you an idea of whether the fatigue and weight loss is from the infection or active disease. And if it is active disease it sounds like you need to adjust your treatment. What meds are you currently on?

Also I know the Mayo clinic has an amazing reputation but even at a renowned center you need a doctor who listens to you and pays close attention to your symptoms and uses those as a guide for your treatment. Do you feel like you are getting that? Because for some of us without that close monitoring of our disease we can get to the stage where we just don't bounce back too well from the state our guts get into. Your concern in that respect is valid.

I believe that there are stem cell trials where having a stoma is not a bar to eligibility so perhaps if your infection was under control but the disease activity isn't then that would be an option.

I had a scoping last month, and have a bad infection in the J pouch and 4 ulcers...I've developed a different issue that they want to get under control with the Prednisone. until that clears up, I'm on hold. But I still have to continue on with life to make a paycheck. It's a bit frustrating as I've been told that I was not considered for promotion 3 different times due to my health being in the shape it's in. (and I can't blame them at all. To be dependable at your job, you need to be there, not in a hospital bed or at home.) I just need to get better!

 

[JTFusion]

here are some more options.

1.marijuana. see the treatment section for more info. also on the crohnology.com website their are alot of good testimonys, some people traded all their meds for marijuana and never looked back. you will want a strain with equal amounts of thc and cbd, or high in cbd.
2.fecal transplants. see link below.

Man, I'm not sure about the marijuana thing. I think I need a Large Intestine for the transplant, don't I?

 

[D Bergy]

I use specific frequencies to reduce the pathogens that official research, and my own, are implicated in Crohns.

I have had very positive results so far.

It does not require that you stop any medications you are currently using. I would,advise against doing that.

It is not for everybody, but if you are out of options I feel it is well worth trying.

I can give details if it is of interest to you.

I hope you can get a grip on the Crohns, one way or another.

Good luck

Dan

 

[24601]

I've only ever had Crohn's in my small bowel and have no personal experience with a J-pouch but I have often read about probiotics being beneficial for J-pouch health. I see that you now have a stoma so I don't know if that's relevant - do they do probiotic enemas for disconnected J-pouches? Maybe if you post with a J-pouch specific title someone with a lot more knowledge than me will come along and suggest something. Perhaps even try a specific J pouch forum for help with that. I guess really I'm saying don't give up. There may be something new to try.

Also on the current inflammation that they are treating with prednisolone, have you asked about the possibility of treating this with a liquid diet like Modulen or Elemental? If it is appropriate for you it would have two benefits - avoiding any anxiety issues caused by the pred and improving your nutrition which sounds like it is very much needed. With better absorption of nutrients and calories hopefully your body will be able to heal.

Of the biologics you have tried Remicade is the one with the mouse in it, which causes the severe reaction, and Humira is the full-humanized version - so is much less likely to cause that severe reaction. But we're all different and perhaps you have a sensitivity to something else in the Humira. There are now some other newer biologic options out there. Have your doctors suggested any? And are you currently on any maintenance meds?

Completely understand the frustration at how long it takes to get this disease under control and how important it is to do this as it is holding you back from living life as you should be able to. Platitudes are all very well and it's great that you've kept a sense of humor but you certainly need to start seeing some improvement.

 

[JTFusion]

I use specific frequencies to reduce the pathogens that official research, and my own, are implicated in Crohns.

I have had very positive results so far.

It does not require that you stop any medications you are currently using. I would,advise against doing that.

It is not for everybody, but if you are out of options I feel it is well worth trying.

I can give details if it is of interest to you.

I hope you can get a grip on the Crohns, one way or another.

Good luck

Dan

yes, if you could PM me that information, I can talk more to the doctor about it. I have an appointment with him next Wednesday. Thank you very much!
JT

 

[JTFusion]

I've only ever had Crohn's in my small bowel and have no personal experience with a J-pouch but I have often read about probiotics being beneficial for J-pouch health. I see that you now have a stoma so I don't know if that's relevant - do they do probiotic enemas for disconnected J-pouches? Maybe if you post with a J-pouch specific title someone with a lot more knowledge than me will come along and suggest something. Perhaps even try a specific J pouch forum for help with that. I guess really I'm saying don't give up. There may be something new to try.

Also on the current inflammation that they are treating with prednisolone, have you asked about the possibility of treating this with a liquid diet like Modulen or Elemental? If it is appropriate for you it would have two benefits - avoiding any anxiety issues caused by the pred and improving your nutrition which sounds like it is very much needed. With better absorption of nutrients and calories hopefully your body will be able to heal.

Of the biologics you have tried Remicade is the one with the mouse in it, which causes the severe reaction, and Humira is the full-humanized version - so is much less likely to cause that severe reaction. But we're all different and perhaps you have a sensitivity to something else in the Humira. There are now some other newer biologic options out there. Have your doctors suggested any? And are you currently on any maintenance meds?

Completely understand the frustration at how long it takes to get this disease under control and how important it is to do this as it is holding you back from living life as you should be able to. Platitudes are all very well and it's great that you've kept a sense of humor but you certainly need to start seeing some improvement.

Right now, I'm stuck on hold with the Maintenance Meds. I need to get the ulcers cleared up first. I have an appointment set up for next Wednesday, that will be the topic of discussion. Along with the Anxiety and Panic Attacks. Thanks for the info on the J-pouch forum, I will look into something like that as well. Right now, I'm not disconnected. The stoma is just a diversion for now. if i can ever get the stoma reversed, then it will be back to working order.

 

[fffaboveallelse]

Hi JT....please don't give up! I was diagnosed in 1979 when they had very little information about Crohn's Disease. I went through umpteen tests and doctors before they finally figured out what the problem was. I have been through a lot of medications and nine surgeries to date. The last surgery was for an Ileostomy and even though it can be a pain to deal with, my diet is no longer restricted and I feel so much better. Crohns is a tough disease and believe me, I have felt like giving up many times, but I was raised to be a survivor and I am. I am actually in the process of writing a book about my life with Crohns and it has helped me to journal my feelings. Also, talking to others that understand can really benefit. Crohns is much more readily known now and there are support groups you can join. Do you belong to the Crohns and Colitis Foundation?

I have read a lot of the posts others have made on your behalf and they all sound like good advice, but you still need to find what works for you. Also, have you ever heard of Ben Morrison? He is a comedian who has a gig called "Pain in the Butt", check it out online, very funny. Laughter is always the best medicine even though it isn't always easy to do.

Crohns is not a glamorous disease to say the least, but between Crohns Advocate Magazine and entertainers who have it or know someone who has it, the word is getting out there and people are finally starting to understand what we go through, or at least empathize.

Anyway, keep on trucking and please don't give up on yourself. We all understand!oo:

 

[April423]

Hi jt,
I am so sorry you are going through this. This disease can be absolutely terrible. It's amazing that you even still bike ride. I have had crohns since I'm 11 (I'm 35 now) and I'm always so tired I don't want to do anything. Some days it's hard to even get off the couch. You seem like an amazing dad and I'm sure your kids want you around so try to stay strong for them. My mom has crohns also and has been through a lot. She had almost all of her intestines removed but she got through it and is healthy now. She is here for me and my son. We couldn't imagine life without her. I know you can do it too. Try to stay strong and hope that this shall pass. Crohns is full of ups and downs and I hope you find the right medicine soon. Have you tried the diet breaking the vicious cycle? It's very hard to stick to but it helped me for a while. I know people who say it's life changing. Anyway I wish you all the best and I hope things get better soon.

 

[Nym]

Cannabis. Get over any 'stoner' tag hangups you may have at this point and just feel better!

It will give you some much-needed respite from all the muck in your head. No one even need know: dose at night, sleep. Wake up refreshed and off you go. You will feel great within one week. During this time get on some liposomal vitamin C and bone broth to help rebuild some good energy.

 

[JTFusion]

Thanks for suggestions Everyone. I'll talk more to my doctor on Wednesday. I have a feeling that my doctor wont be into the cannabis (nor would my employer since I have to do a lot of driving.) plus i live in an apartment for now and its a pretty nice place too. I don't think its something that my neighbors would like to smell if im on the porch. I absolutely do not want to that in front of my kids or inside. I don't know how i would really react to it either. I can't hangout with the smokers on break because i start getting a tight throat (feels like if you have on a tie and its too tight) and i start getting a headache that lasts for a while sometimes. Thanks for all of the insight. Its really appreciated. Enjoy your weekends everyone.

 

[UnXmas]

This may not appeal to you at all, but have you considered what it would be like if you stopped hoping to get better?

I have a progressive medical condition that affects many parts of me. My health is continually deteriorating, I'm becoming increasingly dependent on my parents (who are my carers), and while I am always on the lookout for treatments that could improve my life (and occasionally I do find treatments that help an awful lot), a few years ago a shift occurred in my thinking and I gave up on the idea that I needed to live a "normal" life and accepted that I'm never going to. I'm sorry that I can't describe it very well. But it was such a relief to stop trying, stop feeling like I was failing, stop being continuously disappointed. I'm much more comfortable with things now, just living, with being ill being part of living. I'm not trying to do things I can't do, or trying to do things that I can't do well enough, or trying to do things that I can do but the stress of doing them is overwhelming. Instead I concentrate on things I can do whilst being ill.

I understand if that's not an attitude you want to take (if you can even understand my vague attempt to explain what I mean), but I thought I would mention it.

If that's not for you, I haven't read this thread all the way through, so sorry if this has already been discussed, but I would also suggest you not underestimate the effects medications can have on those thoughts you mention. Sometimes those thoughts can be beaten with the same weapon: antidepressants and anxiolytics. It can take a lot of trial and error, and a very good doctor who understands you as well as understanding the medications, to find the right medications for you, but if you can't yet get away from the causes of your emotional pain - the physical Crohn's disease and the steroids - treating the emotions themselves can keep you going.

And I'm not going to pretend that your family life wouldn't be much happier if you didn't have Crohn's, but I will remind you that you are still a wonderful role model for your children and your family may have learned to appreciate you in ways that they may never otherwise have done.

 

[lenny]

I'm so sorry that you've been having such an awful time. Crohn's is horrible.
I'm over the hill and my eighteen year old has Crohn's and is often tired, so we just bought a couple of electric bikes. They're supposed to arrive on Saturday and we're pretty excited. When my son test drove one earlier this month, it was the first big smile I'd seen on his face in a LONG time. Might be a way for you to keep up with your kids?

 

[JTFusion]

UnXmas--I appreciate you way of thinking and for suggesting it to try. (which I have to be up front) and I kind of think that may be why I'm on the down feeling that I am on. My thing is that I REALLY need to get better, not only for my wife and kids sake, but for my own sanity. (2011 is a long time, just like how long you've been down and out)
I used to have a "date day" with my wife which would be biking (around 25-30ish miles total) then shower, movie, great relaxing dinner, and movie with the boys. I haven't been on my bike in a while, and were it may be "it's just a bike" to some, it was a strong passion of mine. I LOVE to go family riding, mountain/all terrain biking, and my wife is an avid bicyclist and racer! (4 times a week she rides 40 miles! and she's on a trainer during the winter months!) It's a way of life in my household!! I have to keep pushing to get better, but I feel like; I'm done, at the end of my rope. After a busy day of work, my side is Killing me, and I start limping because of a fistula tube that is in the completely wrong area, I'm passing blood, completely exhausted, too tired to do anything with my boys much do anything after work... and living on pain pills should not be a way of life! Thank you for the thought and suggestion, I hope that your situation (and you) starts to get better as well!

Lenny, those Electric bikes sound incredible! I hope that you have a great time on them and make a TON of memories as well! Thank you again everyone, your input is very greatly appreciated!

 

[Nym]

Thanks for suggestions Everyone. I'll talk more to my doctor on Wednesday. I have a feeling that my doctor wont be into the cannabis (nor would my employer since I have to do a lot of driving.) plus i live in an apartment for now and its a pretty nice place too. I don't think its something that my neighbors would like to smell if im on the porch. I absolutely do not want to that in front of my kids or inside. I don't know how i would really react to it either. I can't hangout with the smokers on break because i start getting a tight throat (feels like if you have on a tie and its too tight) and i start getting a headache that lasts for a while sometimes. Thanks for all of the insight. Its really appreciated. Enjoy your weekends everyone.

I understand and appreciate all your points. There is, however, much more to cannabis than the obvious smoking ... much more.

Good luck and good health.

 

[UnXmas]

UnXmas--I appreciate you way of thinking and for suggesting it to try. (which I have to be up front) and I kind of think that may be why I'm on the down feeling that I am on. My thing is that I REALLY need to get better, not only for my wife and kids sake, but for my own sanity. (2011 is a long time, just like how long you've been down and out)
I used to have a "date day" with my wife which would be biking (around 25-30ish miles total) then shower, movie, great relaxing dinner, and movie with the boys. I haven't been on my bike in a while, and were it may be "it's just a bike" to some, it was a strong passion of mine. I LOVE to go family riding, mountain/all terrain biking, and my wife is an avid bicyclist and racer! (4 times a week she rides 40 miles! and she's on a trainer during the winter months!) It's a way of life in my household!! I have to keep pushing to get better, but I feel like; I'm done, at the end of my rope. After a busy day of work, my side is Killing me, and I start limping because of a fistula tube that is in the completely wrong area, I'm passing blood, completely exhausted, too tired to do anything with my boys much do anything after work... and living on pain pills should not be a way of life! Thank you for the thought and suggestion, I hope that your situation (and you) starts to get better as well!

I understand, you've spent so long expecting your life to carry on happily, and it's hard to deal with the change. I'd thought I'd have a normal life, so realising that I was never going to be able to work, never going to be able to have children, etc. was just inconceivable to me for a long time. I'm not even sure how or why I was able, eventually, to accept it (or come as close to acceptance as I can). But you have a very different illness; Crohn's is treatable, it's not progressive, so your health could well improve at any time. If I just had Crohn's and not my other medical problems, I may well still be intent on getting better.

 

[dave13]

Hi

The stress of pushing yourself too hard and expecting your body to do what it just can't(at this point in time)do can be detrimental to your goals.I understand about not being able to do certain things that were once easy to do.

Since my resection,hernia and fistulas I lamented about the loss of quality of life.I am gradually doing what I can,rather than focusing on what I can't.I am in no way belittling your situation or spewing platitudes and this approach may seem simplistic...it is what works for me.A version of what UnXmas does to deal with my limitations.

I'm not giving up,I'm just realizing there are things I just can't do anymore.I am trying to participate in life,rather than sit and be pissed and stew and say "I use to be able to...". That's me and I know we are all different.

I'm happy you are striving to be active. Please don't let the stress of what you can't do stop you from what you can do.

Good luck and sending support your way.

 

[SJ!]

Hi JT Fusion,

Sorry to read that you've had such a rough time! I don't really know if what I say can help but right now and I don't have the medical answers. But my husband Greg is in the middle of a serious flare, He hasn't been close to remission albeit for a random few days of feeling semi ok for close to 2.5 years.

He too works full time and comes home totally smashed, he too can't kick a ball with the kids or go for a bike ride. And yes his colleagues all say he looks half dead!

I'd like to share with you that we appreciate his amazing effort, I said to my 14yo son tonight, don't feel bad that Dad is sick all the time, look to him for motivation, be inspired!

I agree with Dave 13 look where you are right now and what you deal with I'm far more impressed with your story than if I heard you were riding your bike 25k's

Give yourself some bigtime credit for what your going through and keep on going forward!

Hope it all works out well for you and your family!

 

[buttER]

Hi there

I understand your need to keep going, it is a blessing and a curse at the same time.

The electric bike idea is great. I am an avid cyclist too, and I now have an e-bike. It brought enjoyment and independence back into my life again, you do some exercise but you choose how much the bicycle does for you. I really recommend it! You will be able to have that cycling date with your wife again.

I agree about accepting the limitations of the disease, as hard as it is, but sometimes there are creative solutions out there that we are just not aware of. Thank goodness for the forum!

Good luck, you sound like an amazing person.