Uncomfortable to say the least!

[THX_Elite]

Hello to the Community here.

My mom sent me the link to this forum, and recommended that I do some reading on my recent diagnosis of Crohns. After reading some of these posts through my tears, I decided to start a thread of my own and introduce myself to all of you in hopes to learn more about what I/we are going through.

My name is Jesse. I'm 29 yrs young. I'm a single Father of a 5yr old boy with primary custody. My horror story Begins in '07 with an unexpected onslaught of searing, shooting pains in my abdomen. These were pains I will probably remember forever...I went to the hospital and the doctors after decided, after seeing a very high white blood count in my urine, that I needed my appendix taken out immediately, which is what they did. This was my first surgery I had ever experienced, and was truly scared to say the least! After the surgery the doc said that my appendix was pretty much fine and that I, in fact, had several blockages in my digestive tract...he noted that he fixed that problem, however...to this day, I still don't know what he did...

I noticed right away that the pain had stopped if not instantly after that surgery.
Time went on and all was behind me, I thought....
In April of 08, I found my self back in the ER with a broken Jaw and messed up wisdom teeth and had surgery on all of it at the same time! Needless to say that was actually the worst time in my 29 yrs of life

So just as am starting to get over the whole broken jaw thing which completely screwed me up mentally(I was attacked in my own home by a "friend")...I entered that familiar realm of Hellish pain I had once experienced back in 07 that put me in the hospital.

It was April 21st of 09...the day after my little brother's wedding! My dad(whom I hadn't seen in 3yrs was even down for a few days visit). I was at home with quite the hangover and out of the blue I had that horrible shooting pain in my abdomen that relentlessly attacks every few minutes, bringing me to my knees in a waterfall of tears. It hurt like mad. Between it and the fear, I was scared to my very core. It took about an hour of those shooting pains for me to decide to go to the hospital...(because I knew inside, I just knew.... that I was in for some serious trouble, and was going to have to stay.)

The hospital down here were I live is terrible...The nurses were new, uncaring, and always rushing...I felt like a pin cushion the whole time, while they practiced their skills...It was a nightmare. I was miserable beyond belief, my mom said I was the biggest jerk to everyone...I honestly didn't mean to be rude to anyone though...I must have been really medicated and totally pissed off! I apologized to everyone though. I had all the fancy work done on me including the cat scan,(gotta love drinking a half gallon of that chalky white crap, and what a weird feeling from that ink stuff!!!!!My limbs got all hot during the scan, it was odd)...anyways...

I've been in pain every since...my gut has been swollen like a basket ball, the pain is less severe but more constant...I have gained 35 lbs. and then lost 20 of that all in a few weeks, since the prednisone started...I have been resentfully cramming more meds. than food in my mouth it seems, and generally have just been an energy-less wreck on my couch.

There is more I would like to try to say...I'm having a hard time with being angry about all this, and caught up in the sadness of the whole thing. I have my son to take care of and be happy for and I am in need of quite a bit of help....

thanks for reading...it's late I will be back tomorrow :smile:

 

[misscris]

Welcome Elite! You've been through a bit already on your track of getting a diagnosis. So before you went to the hospital in April, did you have any idea that you could have Crohns or was it just a blindsided shock?

I think you'll enjoy it here. Everybody is very nice and welcome. At least I've found that to be the case so far. I just started here recently as well.

 

[AmandaC]

Hi, welcome to the forum.

I feel your pain. I was there only a few months ago myself.

I hope that things are going to start improving for you soon. I can't imagine what it must be like to try and look after a kid when you feel so sick. I hope you find some answers and support here, I know it has helped me.

 

[kello82]

hello elite!
man, youve had some awful experiences, esp with your borken jaws and everything. i cant imagine the physical and mental pain from that event.
you must be a very strong person to get through it all.
its perfectly normal to have all the emotions like you said- anger and sadness. it is a really hard thing to go through, but soem way or another we all make it through and find a way to have happy and relatively healthy lives, ok?

so you just started the humira? hopefully that will help you a lot. it takes a few weeks to kick in, but maybe then you will be feeling much better. we can only hope for you!
also, how far is the next hospital? the one you go to sounds like absolute crap and if you can avoid it, you would have much easier time. it might be worht a little extra travelling to go somewhere where they are attentive and everything.
many of us travel farther distances to get to special hospitals where they are also more qualified to deal with the complex disease of crohns. its something that takes care of doctors who are willing to listen and look at you as a whole patient and think outside the box for you. docotrs who only know how to go by the book are not always the most helpful.

keep posting and letting it all out. everyone here will be here to support you and offer advice! youve found a great place

 

[Guest1]

Bless your heart -- you've certainly been through a lot. Welcome to the forum! This is a great board to be a part of.

 

[THX_Elite]

Thanks for responding :smile: I was quite nervous to try to put my past few months/year into words...I wasn't sure about posting here at first but I think it will help especially considering I am pretty much alone.

I was hit by this disease like a diesel in the night, running a red light...I had no idea it was coming, no warning to the pain that was about to strike, and know idea at the gravity of what was going to happen next.

I am really confused and lost...My family has no history of Crohns, I don't know how I got in these shoes. It has come to my attention recently that I had taken a drug called accutane, when I was in Jr. High for my acne. I had taken it only for a month. It had helped with my acne problem back then really well, in fact it got rid of all of it and it never returned. ...Well I just found out that accutane and Crohns are best buddies...basically that accutane can and basically most likely will cause Crohns down the road in patients who have used the drug. Obviously I don't know what caused all this, but it's nice to have a few culprits to point the finger at!

It's probably important that I also mention...I have been a regular smoker and drinker for over 10 yrs....I know that's not good. Now that I have been diagnosed with Crohns I have been deemed another lifetime challange to quit those habits immediately. This is one of the hardest parts for me...I'm always at home, and am used to ALWAYS having beer and smokes around...I don't know what the hell I'm gonna do, to be perfectly honest.

So ya...Just the other day, I went in to start my Humira treatment...It was up to me to choose between that and the Rem. IV...I had to choose on my own and choose fast what I wanted...(Little does everyone know...I don't want any of this!!!)...but alas...I chose the humira. It sucked getting four injections in a row through my belly skin! Like a nightmare for sure. the drug feels like boiling oil being injected into my stomach. I really hope that it works, especially because these drugs scare me worse than the disease and it's pain.

I appreciate the opportunity to meet all of you and to be able to freely chat about this with people who truly know what it's like bearing this uncomfortable reality!

~here is a pic of my son and I from a year or two ago~

 

[Guest1]

Aw, what a precious picture of you and your son. I've got three boys myself. I'm glutton for punishment.

While I haven't officially been diagnosed with Crohn's (there's quite a few of us who are here), my pain episode came out of nowhere, too. I went to the hospital THREE times thinking my appendix was going to rupture at any moment. I could even feel pulsating through my abdomen. What a scary experience it was. I felt the pain and it just never, ever went away (started Oct. 2008). I don't particularly care for my GI, but I'm sticking with him until I have my colonoscopy in June -- I just got a strong vibe from him that I'm so bored, stay at home mom looking for attention ::eyeroll::

Anyway, you'll quickly see how different everyone's symptoms are here which is what makes Crohn's so diverse.

 

[soupdragon69]

Hey Jesse,

So very glad you found us and your mum did some thoughful searching on your behalf to begin with!

As you will have seen you are definately not alone - even with crohns being so diverse - and seeking out those who understand, can listen, can help with their own thoughts and ideas is a good way to "get to grips" with it all.

Certainly makes your head spin when you get hit with a diagnosis and then feel rushed into making decisions like between the humira and remicade.

I am on prednisolone steroids at the mo and its 2am here and I cant sleep! grrrr

I am also on remicade every 6wks.

Give yourself some time to rebound Jesse. Come and talk to us here when you feel the need. Read the threads and chip in your own thoughts and questions. Each one of us plays an important part in this forum and we may not be able to wave a magic wand and cure ourselves but we have a damn good try at propping each other up throughout our good and rough days too!

Hang in there ok? There is always someone around across the 24hrs with so many from all over the world. Might ponder things before answering or only have time to read and post later but we get there in the end.

Welcome again Jesse. Looking forward to seeing you around. Well done on taking the first steps to post and remember no post is ever too long here!!

Your son is beautiful and I am sure he is the apple of your eye! ((hugs)) to you both!

 

[kello82]

aw cute pic!

YES the first bout of humira is the worst. i was on it for about a year. felt like a killer bee sting to me. i always did the shots into my thigh though. have you thought of trying there? some people think the belly hurts more, some think the leg is worse...its all personal i guess. but worth a shot.
HA ha i typed that without even realizing the funny hee hee i dont make puns EVER!

 

[JillianB82]

Welcome to the forum! My, my, it sounds like you have been through a lot. I know it's easy to feel "angry" & go through the "why me" stage, but I think we all go through that. I was just diagnosed back in March, so I'm still kind of going through that. Feel free to ask any ?'s you may have. Everyone here is a wealth of knowledge

 

[THX_Elite]

You guys are great! It's nice to come back and see that people have taken time out of their day to show support(especially when I know that your days are riddled with your own challenges!!)

So I hadn't mentioned yet that I was also hospitalized just recently...like a week or two ago...for EXTREME pain in both of my knees!!!! I woke up in the middle of the night and it felt like both my knees had been smashed!!! It was the same kind of shooting pain that I get in my gut, that comes in "contraction" like phases. They said it is Arthritis secondary to crohns, and that it usually attacks larger joints like the knees and hips!....after a pain treatment at the hospital, it seemed to go away...I hope that doesn't happen again soon!

Has anyone else had an attack of "arthritis" as an attack from crohns?

 

[tkdrew2002]

I'm glad you posted. I hate what all you have went through. Me and you are about in the same time frame. I did my first does (4 shots) of Humira a couple of weeks ago. I did my second dose (2 shots) a couple days ago. Hang in there. It will get easier...I hope. haha. Don't try to quit drinking and smoking at the same time. Try to quit drinking first...the stress from quitting both at once will more than likely put you in another flare. Just take things One day at a time and remember, we are here for you anytime. Good luck and keep us posted. PM me anytime.

Kristi

 

[soupdragon69]

Yep I have inflammatory arthritis Jesse.

Was finally diagnosed last August. They are treating it as they would rheumatoid arthritis because it is a form of inflammatory arthritis and even through my blood tests are negative for rheumatoid I have already got bone erosion on MRI scan on my right foot.

I am on a drug called methotrexate to help reduce inflammation overall. As a crohns sufferer we shouldnt take any anti inflammatory painkillers like Ibuprofen or Voltarol for instance as it can increase our gut problems.

As a result we can be limited to what meds we can have when other problems arise but it really pays to keep yourself informed!

Currently I am on pred for arthritis, crohns and asthma (falling apart aint I! LOL) as with me its like a domino effect. I am due to stop the pred tomorrow again. Also take acetominophen (sp?) and tramadol and gabapentin for pain from the arthritis.

The gabapentin works on nerve pain I have due to inflammation from the arthritis in my shoulders and feet. I get like electric shocks that really make me jump and want to yell.

I also use heat and cold to treat the pain when I can and wear splints on my hands at night as per my rheums team to help them to rest. Gentle massage helps that isnt too deep sometimes. Am sure some of the others might come up with some ideas too.

You will find something that works for you Jesse. Can be a bit of trial and error so hang in there.

Something to keep in mind too is that for many crohns folk the arthritis only kicks off when their gut isnt good, is settling after a flare, or about to start a flare so you may well be able to use it as a barometer for your gut health too if that makes sense?

Hope you are doing ok.

 

[jamie2462]

welcome. I was just diagnosed in Jan 09 I hear your pain. Are you still on the 60/mg of pred a day or have you started tapering down now?? Will be chatting soon. Hope you didn't have too painful of a weekend.

 

[THX_Elite]

I have been lost when it comes to the prednisone for the most part, and have adjusted the dose on my own...I started with 30mg in the morning and 30 at night...then the doc moved me to all 6 pills in the morning, so 60mg in the morning for a couple weeks...(he said that makes it a lower dose somehow), from there I tried to drop 20mg (2 pills), and that was a big, big mistake as my pain came str8 back to bite me!! So anyway, I moved my dose back up to 50mg(5 pills), and stabled out over the past week. Just today, I decided to break half off of one pill and only take 45mg every morning...and I will do that every two weeks(break another 5mg off).

If I was to give an early report as to how this Humira is doing for me....I seem to have reduced a bit in swelling! The pain is down just a bit also which is great...it's been a hard few weeks! I'm not sure, though, how it's actually doing, as I still feel horrible in the gut, and the prednisone side effects....I think you all know.

 

[kello82]

hmm your doc should have given you a very specific tapering schedule for the pred. you shouldnt have to figure it out on your own at all.
normally they say something like "on day x begin taking 50 mg per day for 7 days, on day y begin taking 40 mg per day for 7 days..." etc. i take it he didnt do that?

i would call up and bug him about it. ask him for a specific time line. then you wont have to figure it out, its not easy and if its done wrong, you can end up feeling even more like crap from the withdrawal side effects.
you dont need that!

 

[THX_Elite]

I have been told numerous times that you should only reduce the dose by 5 mg every 2 weeks...and that dropping more than that or "large doses" can actually be... (the term ~deadly~ was used). I tried dropping 20mg in one day before I knew this...(like a week or two ago) and my pain shot up, 3 fold, by morning!!!! I surely don't recommend dropping more than 5mg at a time, given my new experience. But the doctors have also even told me that I am not responding to the prednisone...so I don't know. I'm really new to all this, really confused...and REALLY SWOLLEN!!! LOL ...Actually the swelling seems to be reducing even though it fluctuates all the time...I can feel a severe sting in my lower right side all the time now...it's a really "deep" sting, and is one of the worst things ever! I've had this pain since April 21st now!!! I really am hoping to see improvement. And I Hope the same for ALL OF YOU!!!!

...I think I'm due to have two more Humira injections on the 12th.

 

[jed]

After reading some of these posts through my tears, I decided to start a thread of my own and introduce myself

heh, i remember getting those same kinda tears the first few times i found & read through this place Elite, really was quite an emotional night.

and i think putting my own story down on paper (or internet) was one of the first days i really started coping better with the whole mess of crohns.

great to see you've joined and taken the time to tell us about yourself.

welcome

 

[Guest]

hi Jesse, a belated but very warm welcome to the forum

wow, i just skimmed your posts here (madly pushed for time as per usual right now) and boy, you've really been pushed to the limits i can empathize with a lot of what you've said.. joint pain, and in particular as Jed also mentioned, the emotion i felt when i first read some of the stories in here. for me, it was almost like, at long last i could actually face my own grief and negativity about having Crohn's, instead of trying to act like everything was ok.. simply because i could see there were so many others who had been through, or were going through, the same feelings and fears.. it was like touching base.

that's why, when i say i'm glad you joined, i don't just mean it's lovely for us to have you here, it's also so good for you too.

looking forward to seeing you around the forum Jesse, and hopefully i'll have a bit more time soon to respond more fully to your posts.

 

[bethyd78]

Hi Jesse
I am new to the forum too. I know it was hard to open up and talk about it but it does feel good. I am so sorry about what you're going through. It must be hell to be sick and have to take care of a young child. Right now I am just taking it one day at a time. That's all I can handle.Best wishes to you !
Bethy