I can't function and feel helpless!

[nogutsnoglory]

I feel like a zombie and can't go anywhere without feeling like collapsing. I am so depressed that this disease has taken my life away. I have excruciating pain from my abscesses and fistulas and abdominal pain but also major joint and bone pain that feels like arthritis. I dont think I have arthritis but rather am just suffering by being in an inflammatory state. I am hunched over and hop like a 90 year old, my whole body hurts so bad. I can't sleep due to my sweating from my infection, the pain and running to the bathroom because I keep soiling myself. I am so miserable now and after numerous surgeries and medications I am worse than ever.

I don't feel human anymore. I don't want anymore blood tests, MRI's, surgeries, appointments, meds I am just so sick of all the prodding and poking and can't take it anymore. Nothing helps me get better. I dont think i have any veins left or blood to give. I feel like a lab rat that is just being experimented on and I hate it. Of course I will continue treatment but I am just so pessimistic at this point.

I am sorry for venting and not being able to participate as much as I'd like with the forum lately. It's just been a really horrible few months and it was hard before.

 

[Jennifer]

I'm sorry you're in so much pain. I know the feeling of being sick of it all and not wanting to deal with it anymore yet I'm glad that you're able and willing to continue with treatment. Its hard to do but I believe its possible for everyone to reach remission its just a matter of how and when.

Have you had an x-ray or any tests recently that may show if you do have arthritis or not? It is possible. All of my doctors agreed that my osteoarthritis was caused by Crohn's. It was found in x-rays and is very debilitating. If you're not seeing a Rheumatologist yet then it might be a good idea to try seeing one as they may be able to help with the joint pain more even if it is caused by Crohn's alone.

What have you been able to eat and drink lately? Try to keep up your fluid intake as much as possible. Having water bottles near the bed or couch or wherever you frequent can help at least reduce the pain of having to move around and grab something to drink. Also I know pain can make sleep difficult along with frequency of bowel movements but I hope that you're able to try and get as much rest/sleep as possible. Also when was the last time your vitamin levels were tested? I can see that you're supplementing but are they within the normal range? Being low in vit D can cause chronic pain.

Don't worry about the forum. Take care of yourself first and keep us posted on how you're doing.

 

[Amy2]

I'm so sorry, nogutsnoglory.

Please try to stay as optimistic as you can, because research shows it will be beneficial to you. I hope that you get help SOON!

 

[Carrie SA]

And now I'm crying. It hits home. I was only properly diagnosed in January this year, finally, and I don't think the reality started really settled into my brain until last week and this week which were truly revolting. And I wonder why I'm so emotional lately! I can only imagine what you're going through and am sending you tons of love from accross the ocean. :kiss:

 

[nogutsnoglory]

Thank you Jennifer, I am low on Vit D but not astronomically low. I do see a rheumatologist who hasn't mention arthritis but rather osteoporosis and that's why he has me supplementing with 50,000 IU of Vit D2. Not sure why its not D3 but that's what's he gave me. I did have a GI once throw out the term osteoarthritis but I ultimately left his office since I didn't trust his opinions and judgement overall. Were you diagnosed by x-ray? I have had chest x-rays, numerous MRI's of the pelvis and abdomen and a DEXA scan. I'm not sure if those pick up on arthritis.

Amy, thank you. I'm a big believer in being positive and do believe that it helps but when you keep falling its hard to maintain that attitude. I do like some praise and worship songs and motivational books that do help lift my spirits. I pray to God but clearly we have a bad connection and the line is fuzzy lol.

Carrie big across the ocean hugs to you. Lets fight this together and let crohn's be a thing of history!

 

[UnXmas]

Is it really annoying if I say I know how you feel? I know sometimes that's the thing people really don't want to hear, as it seems like you know no one who's as ill as you are, but I had the same experience of feeling like everything was being ruined by illnesses.

Honestly the thing that's helped me move on from that state (mentally) was accepting that my illnesses were always going to be there and was always going to get worse. The worst thing for me was when I was struggling to make it through a lecture at uni when it left me wondering how on earth I was ever going to be able to manage a full time job, or struggling to go out just once a week and wondering how I was ever going to have a normal social life. When I just gave up and quit trying to get better, it was a huge relief. Perhaps you won't have to give up as entirely as I have - I have a progressive neurological disease (the symptoms are kind of like MS, which people are usually more familiar with, to give you an idea).

When I gave up all hope of being normal, the freedom was more than I could have hoped for. Now when I have a bad moment or hour or day health-wise, it doesn't come accompanied with the despair that I have to get better so I can live like a normal adult. It just is what it is. I don't stress over every medical test and doctor's appointment worrying over what the outcome will be anymore. I don't feel like I'm failing when my health deteriorates. Although I still do look at "normal" people and feel upset because I want their lives, I find it a whole lot easier now to focus on the things I can still enjoy - my dog, family, tv shows, books, learning online about topics that interest me. Somehow giving up the hope that I must get better eradicated the constant thoughts that my future is doomed and all the pressure I put on myself to get better - or at least to find ways to cope with being ill - was lifted and it was such a relief .

I don't know if you're at the same point as I am. Because I know my neurological condition is progressive, perhaps it's different to Crohn's where I know there's always a possibility of remission. But even though it goes against the grain of all the ways we're told we're supposed to deal with illness - have hope, keep fighting, keep trying, it's all about attitude, etc. - adopting this mindset (which I didn't really do intentionally, it just sort of happened) has made my life so much easier and I honestly feel like it was the only way I had left of understanding the way my life was going. Things may be very different for you, but I thought I'd share the way I've ended up coping because there was a time where I felt a lot like the state you've described in your post.

 

[nogutsnoglory]

Unxmas, this forum is the only place I wouldn't be offended by someone saying I know what it's like. Sure we have some who are better or worse here but we all get it. I can accept that I will always have limitations ie: what I eat, need to take meds, have a bathroom nearby, etc but I cannot accept my current state because it is non stop pain and agony, sleeplessness and it is no life. Accepting this is accepting my being a vegetable for the rest of my life. Rather than accept it I just need to push forward, I'm just weak to push but I have no choice.

 

[Samboi]

I'm so sorry you're having a totally shit time of it NGNG (pun intended).
Your kind words and support have certainly helped me out of some dark corners before I recently hit remission. Please let me know if there is anything I can do to help you out of your dark corner.
I wish I could send you one of my beautiful little kitties to cuddle you. They always help me feel better.

Below is my attempt at sending you a virtual kitty for a cuddle - I'm not very good at it though - sorry!
I've sent you my little girl Pixie - she is an awesome cuddler and just beautiful.
She's a torty with tortitude!


meow!

>^. .^<

 

[UnXmas]

Unxmas, this forum is the only place I wouldn't be offended by someone saying I know what it's like. Sure we have some who are better or worse here but we all get it. I can accept that I will always have limitations ie: what I eat, need to take meds, have a bathroom nearby, etc but I cannot accept my current state because it is non stop pain and agony, sleeplessness and it is no life. Accepting this is accepting my being a vegetable for the rest of my life. Rather than accept it I just need to push forward, I'm just weak to push but I have no choice.

I was thinking of you yesterday. I'm very lucky because severe pain is not a major problem for me, the pain that I do have is easily controlled with codeine. When I've had severe pain before it's usually been when recovering from surgery so I always knew the end was in sight. The last few days we've had tons of family visiting, I was trying so hard to enjoy it, but for some reason I had diarrhoea all day yesterday with some of the worst stomach cramps of my life. I'm also taking a break from codeine which I'm sure didn't help matters. I did love having all my relatives here, but a large part of yesterday the physical pain was demanding my attention so much that it was near impossible to concentrate on everything else. I think mental pain can be much worse than physical pain, but physical pain can demand your attention like nothing else, where all you can think of is wanting the pain to stop.

So I was thinking of you and this thread and how amazing you must be to be dealing with severe pain everyday without the wonderful addition that I had that I knew mine was temporary (by about midnight last night the diarrhoea stopped and the cramps eased off). I managed to focus as much as possible on enjoying time with my relatives, although I skipped all the big meals that were planned and stuck to fortisips I made myself accompany everyone on outings and managed to not complain once about how awful I was feeling. I did end up hunched over a lot and one person commented that I was pacing, bent over double that it looked like I was in labour, but thanks to this thread I really tried hard not to take it for granted that my pain would be short lived.

By the way, I may have mentioned this before but are you against taking sleeping meds? (I know a lot of people try and avoid them.) I take amitriptyline every night and it knocks me out so that I can sleep through anything - including the constant discomfort in my stomach and bladder and through my dog jumping onto my bed in the middle of the night! Insomnia is nasty but if it's the pain that's keeping you awake there may be things that your doctor can do to help you, even if the pain itself can't be controlled there are ways to help you sleep well despite the pain.

 

[afidz]

I am so sorry NGNG. Stay strong.
Have you thought about going to one of the mayo clinics? Or, I have heard the Cleveland Clinic is really good for Crohn's patients as well and thats a little bit closer to you. I don't know if you remember her, but ForeverCrohns went there and had pretty good results and was able to return to her country in a much better state than when she left. (her and her sister both). I only suggest this because it sounds like you have a pretty severe case and there has to be someone out there that can help, something that hasn't been tried.
I really hope you start to feel better soon. You deserve it

 

[Justin1982]

Cleveland Clinic is excellent. I am still quite sick, but at least have happened upon a caring, listening, doctor. Diagnosed with Crohn's disease, my CBC looks like a drunk walking a straight line. I now have vitamins and a cortosteroid to take daily.

Every morning is an adventure. I have good days, bad days, good weeks, bad weeks. Until treatment, imagining a good day was out of the question. At least I now have some.