Crohns from Hell

[Jerman]

Hello Everyone, I am new to the world of crohn's and am truly struggling. I have no energy and am so damned tired from the pain and stomach spasms, the time spent in the bathroom, and being unable to function at a reasonable level.

My Crohn's flared up for the first time after I had an ear surgery to insert titanium ears tubes. I have been admitted to the hospital 5 times just since March with a level of pain that I had never experienced before. I had considered myself reasonably tough up to this point in my life, but this pain doubles me over in agony.

I am father of four wonderful kids and they are all so worried about me because of the extended time i have had in the hospitals. I simply cannot function at this point, the pain affects my ability to focus and I have done some dippy things as a result. I am so very frustrated that I cannot simply "will" my way through these symptoms or work to "block out" the pain as I have done so well in the past with other issues, broken nose, knee surgery, severe ear infections. This just beats the hell out of me!!

I had my challenges with depression before the crohn's and am really struggling now. I seem to do well initially after a hospital visit spent receiving iv steroids. I can start to feel the symptoms and the pain building day by day and have been at a steady 7 out of 10 on the pain scale for the past 4 days. I had another cat scan today and probably should have been admitted but really dont want to go back in.

Please help!!! Any advice will be very appreciated. I truly hope it gets better than this, I am currently unemployed due to a layoff but cant imagine physically tolerating working right now. I am so overwhelmed.

Jerman

 

[kello82]

oh jerman, i feel for you!
the pain and the being so tired of it all and the depression--im kinda at the same point
i even just had an appt with my doc and got a script for prozac today, after 10 years of dx ive never been so "off" from myself. hopefully it will help with my mental capacity to deal with it all.
have you ever looked into antidepressants?
not sure how much they help people in our situation, but it seems so normal to be depressed not being able to live life the way you want. also, it turns out that being in pain for prolonged periods of time really depletes your brain of seratonin (the happy chemical), so pain really can cause depression, i think its the main cause of mine right now.
and i consider myself a tough one too! never ever needed pain meds until this time around, it was just crippling pain.
are you on those either? ive not had much experience with them yet either, but you know, theres people whos quality of life is greatly improved because their pain levels are under control. maybe seeign a pain management specialist would help you find some relief without going overboard on the meds.

ok well other questions: what meds are you on for your crohns? do you have a regular GI doc thats helping you through this? when were you dx and how long have you had symptoms and stuff?
theres lots of meds out there, many people attain a good remission when they find the med or certain combo of meds that works for them! there really is hope that you can be happy and healthy with this!
me personally, ive been through all the meds and i got to bad and had a temp ostomy done about a month ago and as far as crohns symptoms im improving and no longer am in the bathroom 20+ times a day--really it was that bad!
so, yes surgery isnt what anyone wants, but it should improve my quality of life in the long run and frankly, if i hadnt done it, my body wouldnt have taken much more weight loss, pain, etc.

you dont deserve to be in so much pain all the time, no one does. and you deserve to be able to spend time with your family and work, etc. start finding which solutions may be for you nand try them out! you will find one that makes you healthy, its out there!

this site is a wealth of information and full of people to help and be friends with. also a place to laugh and vent it all out, ok?
its been my sanity over the past 6 months (the worst of my life i can say).
ask questions and we'll do our best to help ok?
take care!

 

[teeny5]

Jerman, I am sad to hear that you are doing so bad right now. It does get better. I had never been so exhausted or run down as when I first had a Crohn's flare. My docs all said that it is different than just a cold or something because your body is fighting the inflammation. It takes a lot of energy for it to do that. Energy that is taken away from everyday life. To top it off, if you are like I was, you can't hardly eat. This too wipes out your energy. All I can tell you is to hang in there. Try to find ways to relax or "tune" it out for a bit. You may not be able to totally tune out the pain, but for me sometimes just watching a favorite movie or chatting with a friend on the phone made me feel a little better. My Crohn's has been pretty mild so far, but it is the worst thing I have ever experienced as far as health. I too felt like I was a strong person, but Crohn's knocked me on my ass.

Welcome to the forum. Ask us anything you want. Like Pen said, we have heard it all. The nice thing about the forum is you have friends here that know exactly what you are going through.

 

[Jerman]

Hi and Thank You to Kello82, Pen, Teeny5,

I truly appreciate the quick feedback as I do not know which direction to turn to at this point. I would like to answer each of the questions you posed and hopefully continue to draw upon your knowledge and experience.

Current Medications- Pentassa 500mg two pills four times per day

Effexor- (depression med)

60mg steriod- Prednisone

Omerprazole 20mg

Kello82

As far as pain meds are concerned, I am running into a problem with a horrible pain on my right side, ( the ileum area) one of my tests said that I had a deformity in the ileal valve, and that is one of the few things that have actually showed up on the tests that i have had done. My Crohns symptoms and challenges do not seem to be the cause of my agonizing level of pain. I have had 4 cat scans, 3 xrays, blood work, and so many colonoscopies that I can hear the wind whistle when I touch my toes!!!

Yesterday I went up to Boston for an angiogram (?), I was told that this process took over 1200 pic of my torso and abdomen. I just got the call and all came back normal. I have had docs tell me that they see no physical reason for this current pain, and am now being treated as med-seeking! As you said Kello, I have never felt the need for pain meds before (except for chronic ear infections) but this pain is absolutely unbearable. I am taking pain meds at normal dosing intervals but am trying to stay on top of it as the pain seems to "bleed through" high doses at times and I just dont want to hurt like this!

I am not med seeking and feel that docs are so hung up on this that they are labeling and not able to find the cause at this point but are not prescribing pain meds as "WE DON'T KNOW WHAT WE ARE TREATING YET." I do understand the litigious nature of the world and was told by a doc that they actually can be sued for "getting people addicted" to pain meds. However, I have legit pain and no med for it. What is also concerning is that the pain management clinic that my GI doc was going to send me to is now refusing to accept crohn's patients. So if the new docs cant find what is wrong then i will REALLY be screwed huh??? The new doc was a bit stumped today when I talked to him, saying he really was suprised that nothing showed on the film. He is ordering blood work for poryyria, lead screening, as well as a 24 hour urine collection.



Pen

Hello Jerman, I must say you have alot stress, and if you know alot about Crohn's, stress is a major trigger. Being laid off is hard on a healthy person, and family worrying about you is hard too. You are lucky your children are supportive of you. Are they young or adults?.....

My kids are 18,13,9, and 3years old with the first three being my boys and the youngest being my little princess. I am also fortunate to have my wonderful wife who is my very best friend in the world and the subject of both my teasing and undying adoration.


Teeny5

Jerman, I am sad to hear that you are doing so bad right now. It does get better. I had never been so exhausted or run down as when I first had a Crohn's flare. My docs all said that it is different than just a cold or something because your body is fighting the inflammation. It takes a lot of energy for it to do that. Energy that is taken away from everyday life. To top it off, if you are like I was, you can't hardly eat. This too wipes out your energy.

YOU ARE ABSOLUTELY RIGHT TEENY5, I can barely eat as everything that I put into my gut hurts. I try to eat at least something each day to avoid having my motility slow down, but dont even like to eat anymore.

Please my new supercyber pals, share your feedback as soon as you are able. Thanks

Jerman

 

[Jerman]

Hi again, I forgot to mention with the other med stuff that my white blood cell count has been consistently elevated (slightly high) on all bloodwork since march.

Thanks again

Jerman:depressed:

 

[bethyd78]

Jerman
Been there done all that. All my scans came back Normal. They insinuated the
pain was all in my head but when they actually did surgery they found I had Horrible Adhesions (scars) that went to my colon and abdominal wall everytime my
bowel would act up it would set off the pain with all the inflammation. Every time
I have said there is pain they found something. Just keep on going to the Dr. keep
on going to the ER go to see a surgeon if you have to they labeled me all kinds of things at one ER. But I don't care.Today I had a gastroscope and when I went into the room my GI dr said I've got the pros here to sedate you he actually had
anesthesia first time I ever slept though a scope. I've always been wide awake.
I have such a high anxiety rate that no matter how much medicine he would give me I would stay up. But now he knows that I have Crohns and the pain I suffer is real he tries to Help. And believe me he does believe me now. My terminal ileum was all ulcerated on the colonoscope. He does give me pain meds and lomotil for diarrhea b/c it is severe. Just keep on plugging b/c they will find it.

 

[fenway1971]

Hi Jerman, and welcome. This is a great place to escape and seek advice or vent or share jokes. Great advice from den mother Pen to baby Kello (sorry to pick on you two...but, well, we all pick on everyone here).

Prednisone 60mg will drive you nuts. How long has doc suggested you stay on pred?

I find that it's a combination of the right drug cocktail, modifications in diet, reduction in stress that helps manage the disease and its symptoms. The best way to snap out of depressed feelings is to focus on one thing that will make an improvement in your situation and take things one step at a time.

 

[kello82]

yes jerman we are your new supercyber pals! haha that gave me a smile.

well, i can only hope that further testing will lead to this all getting figured out, but until then, i know the predicament you are in with the pain vs. the drs not wanting you to have meds.
that happened to me in the weeks leasding up to surgery, we were waiting to see if the Tysabri (one of the biologics) was taking effect, but i was having severe pain. but my doc didnt want me to mask my symptoms like that. it was so horrible, but i do see it frm the other side too. that until they know what theyre dealing with, if they mask a symptom, they could miss a very important piece of the puzzle. does that make sense? again, maybe this is where a pain management specialist would help? maybe they would know what would help you get through the day not in agony, but also not cover up everything thats going on.
just thoughts.

to baby Kello

heyyyy!!!
hahah i have so many forum titles.....first the baby, the dead thread reviver, post counter......

 

[katiesue1506]

necro poster?

 

[kello82]

haha oh yeah that was the term.
i couldnt think of it so i said dead thread reviver.
same thing i guess lol

 

[katiesue1506]

 

[soupdragon69]

Hi Jerman,

Very very glad you found us here! Sorry to hear you are struggling badly and trying to stay afloat physically and emotionally too.

Pain can be the most wearing of things. Drains you to the core. My GI told me a few years ago that alot of Crohns patients can have normal or near normal blood tests and be in a terrible state physically! Its one of the things that helped me to cope when I felt doctors werent being fair. I have had a crohns diagnosis since Xmas 06 but only last Nov (08) was told by a GI during a hospital stay that it was IBS and nothing else. Since then I proved that they were under dosing me on my remicade and have improved with the right dose!! All of a sudden they are listening again - funny that eh?

YOU know your own body Jerman. YOU are the one that suffers and the one that lives with this 24/7. You will find we will all support you here through the tough times. We understand the constant fight and how exhausting it is having to fight your corner with medics and other staff on top of how you feel when all you want to do is just scream at them to open their eyes and ears and use the brain thats between them! Only problem is you just dont have the energy the majority of the time and you wonder where you will get the strength to cope.

Wonder no more Jerman - we will be your ability to cope, to listen when you need a rant or questions answered, to understand why you are down, to maybe come up with ideas on how to deal with a situation even... We arent medically qualified but we KNOW what its like to fight this internal war and will stand right beside you each day ok?

If you think it would help you could get your wife do do some reading here or log in herself. We have some spouses here she will find to talk to also. Its about helping you both so you can have some quality of life. Its what we all strive to isnt it?

Hang in there Jerman. We are here, we wont go anywhere and we generally can see the upside of things no matter how bleak they are at times. Keep pushing the medics! Remember they are there to help you return to better health and that means them thinking outside the box at times so remind them of that!!

Thinking of you and your family ((hugs))

 

[Jerman]

Hi cyberpals, sorry i havent signed in for a bit, as u may guess i have been a bit overwhelmed of late. I am really scared at this point that my docs cannot seem to find what is wrong with me. I am now working with some specialists from boston and have a new gp that i like. however, my pain continues to present at a disabling level each day.
my pain is in the ilea area, on the right side of my adbomen , about one hands width below my right rib area. I had a 24 hour urine collection and more blood work done. My crohns may not be the issue, i am afraid that i may have a blockage or a lesion on the outside of my intestines that is causing me this pain. i do not have the explosive diareaa (sp) that i tend to have when i am in a crohns crisis. my bm's are long and thin as if they needed to fit through a tighter spot. SO SORRY FOR THE GROSS DETAILS, NEED TO B REAL THOUGH.
my new doc called with the test results and again found nothing in the blood work or in the urine collection. he stated that he is very concerned for me... i am really a bit worried. I dont mean to be dramatic, but i feel like i am dying. my pain is though the roof, i have not stamina no strenght and no answers. i do not know what to do.:voodoo: :ymad:

 

[kello82]

hey jerman
the long thin stools could indicate a stricture.
have they talked about doing a scope or anything so that they can see the inside of whats going on?
that might be a good thing to bring up. and deff tell your doc about the thin stool if you havent already.
and dont worry at all, NOTIHNG is gross here, we are all used to poo talk ok?
good luck, push for answers! whatever is wrong needs to be figured out asap!

 

[fenway1971]

Hi Jerman -
Hang in there. Don't be embarrassed about sharing gross details - that's what we're here for.

What tests have you done? Make sure you press upon your doc that you are in tremendous pain. Hope you start feeling better.

 

[Jerman]

How do you guys impress upon your doctors the need for pain meds in managing the day to day agony? I am currently taking vicodin 500mg for abdominal pain. they are prescribed to take one every four hours but I am needing to sometimes take two and a half tabs in a bad 4 to 6 hour span. I am truly not medication seeking but cannot manage this pain and be at all functional. even simple tasks like laundry and housekeeping are insurmountable without numbing the pain a bit. I have had docs tell me that they cannot treat the pain without knowing what my condition is!!!! WELL WTF??? If I know what was causing the pain, I would tell them so they could fix me. I have no quality of life anymore. I cannot work at this point due to my "condition" , my wife's health is compromised at this point due to a recent diagnosis of fibromyalgia, so my stress is compounded by worrying about her and her about me. She is on a leave from work for now and we are trying to support each other and regain our strength to go forward. I am really frightened at this point. I feel like I am dying and no one can find what is going on. I don't mean to be dramatic, but I really feel like it is not going to get better. We will likely lose our house at some point due to falling behind, I dread dissappointing my wife and kids in that way.

I just want my life back. I used to be strong and very willfull. I was never hindered by physical pain and have only needed pain meds to manage severe ear infections. (think i may have mentioned that) I know that this is kind of crazy but i feel as though i have lost some of my ability to function cognitively. the pain and the constant discomfort affect my ability to focus. i really only eat about one time per day as my stomache hurts regardless of what i put in it. Oh my god, i feel like I am losing my mind and my grip on things. I already have issues with depression and this is kicking my ass ! (really no pun intended) how do you guys stay strong? What should I do? Help me felllow cybercrappers!!!

 

[jermans wife]

Hello CyberPeps - I am jerman's wonderful wife , lol. I have been reading and reading and reading lots of forums, medical information about the GI area, crohns, etc... What do you do when you can't find any doctors, after tests and tests, still have no diagnosis??? Short of dissecting my dear husband on the table myself, this is driving us crazy. Thankfully we have a great relationship, lots of conversation and are the best of friends. I appreciate all the information we've read and will continue to read. I just wanted to say thank you all and let you also know I am 100% beside my husband and he is so wonderful it's very hard to see him in this state/condition but we will fight on and find ?a miracle...

 

[Peggy]

Hi there jerman, I know what you mean, I get a lot of pain that the doctors say they cannot explain, Its very frustrating and tiring. I hav to see the Gastro Doc in october hoping for some answers then. Good luck and keep smiling. Peggy

 

[Jerman]

Thanks Peggy good luck to you as well and welcome to the forum!