I'm a new Chroney

[Romey]

Well, after weeks of what was diagnosed as flu and then hemorrhoids, I finally got my diagnosis March 4th of severe Crohn's. As I've gleaned from the forum, there are many here who can relate. My life went from 90 to near 0 real fast. My initial flare is a bad one, but I was blessed to find a great GI in Memphis who is considered a leader in this disease and I am glad to say I'm making improvements albeit just 12 days into this new season in my life.
Most of my issues are lower colon and rectum related. My diarrhea has stopped, stools are now normal, but not much control. My energy stays sapped and my hemorrhoids are awful (at least I think it's the roids) anytime you have golf ball sized and painful appendages hanging out rather than being tucked in, well you know the pain.
My wake up call was when I began passing large amounts of bright blood 3 weeks ago and constant diarrhea. In three weeks my weight fell from 207 lbs. to 191 lbs! I'm a 6'3" 53yo male.

A colonoscopy and CT scan later and now I'm here.
GI put me on the following meds immediately:
40mg daily prednisone
1000mg up to 2000mg mesalamine suppository (canasa)
.375g Apriso capsules oral mesalamine
500 mg Cipro antibiotic
250mg Flagyl antibiotic

What's better:
1) I'm packing in 3500+ calories a day and I'm now back to 195 lbs
2) Bleeding has stopped
3) diarrhea has stopped
4) my overall color and strength are better, but I am aware to be careful about the prednisone rush.

What's still Not good:
1) my rectum and anus are not good. My arse is inside out and it hurts. Tylenol helps and I believe the mesalamaine helps. Thank God for a hot bath tub!!!
2) I have no strength to work. I own rental houses, so I can hire the labor, but my overall stamina is non-existent. This probably bothers me more than anything. I can drive a little, go to the store and walk a little, but I have to be careful about not over doing it. Some days it's bed and easy chair only. Im looking forward to getting back active again. This disease WILL NOT win!

What's great:
My wife ! She has stepped up and is right alongside me. I cannot imagine going through this alone. She actually told me she thought I had colitis weeks ago after researching my symptoms and she was instrumental in finding the GI we now trust.

What's bothering me:
The unknown. I believe I'm making progress. I am glad I can eat. I just want this flare to finish.
We sit down with the GI this coming Tuesday to discuss the CT results and gauge my progress and next steps.
I'm changing/upgrading medical insurance April 1st since the meds and treatments can be very expensive as I'm learning quickly.

I hope most of my rectum issues are hemorrhoids, but I'm afraid not. My energy levels tell me my colon is still sick.
Well, that's where I'm at.
Glad I found y'all here. Thanks in advance.

 

[Trysha]

Hello Romey
Welcome to the forum.
There is plenty of information you will find in these pages and you will also find new friends with similar stories.
It will take a bit longer for your symptoms to eventually disappear and you reach what is called a remission.
The time is highly variable to reach this state.
You sound as if you are doing remarkably well in a short space of time.
Some things may take longer and this a point for discussion with your GI.
It is just great that you have found a good GI.
Please let us know how you progress.
Hugs ad best wishes
Trysha

 

[yosemitegirl]

Romey... I hate to say welcome to this forum, but there it is... welcome.

Having had Crohn's for 45 years there are a couple of things I would suggest that you clarify with your doctor. Rarely does Crohn's involve the rectum though it can affect every part of the colon. Ulcerative colitis is notorious for rectal involvement. Is he sure that you definitely have CD? Has been misdiagnosed even under the microscope. Sometimes there is a cross-over where they honestly don't know. Same basic regimen (though some drugs work better on UC and maintain remission while not true for CD), but very important to know later should you ever need surgery. Crohn's cannot be cured by surgery (I would know this), UC generally doesn't recur with a total colectomy.

Hopefully you do gain your strength back soon. I know all too well how frustrating that is. And others often don't understand since what's wrong with you cannot be seen from the outside (except for your butt, and you don't want to freak anyone out showing that).

Supposedly, and I use the word lightly, later-age onset is (supposedly) of a milder form.

In 45 years, I am sure of just a few things. They couldn't even spell it when I finally was diagnosed. Blamed it on "nerves"... sent to psych. Now, as sad as it is, there are very young children with CD. Not nerves. 10 surgeries later, I know surgery doesn't cure it and goodbye forever to that vital part of your intestine. Some better drugs, same old drugs... still no known cause or cure. And for me, always more questions than answers.

I wish for you a much better road, a nice clean remission and few to no drugs.

Take care... Michele Lea

 

[yosemitegirl]

Romey... oh yeah. Thank God for your wife's love and support (more rare than you know). I am sure you are grateful and appreciative. It's a road best traveled together, and NOT solo.

The best to both of you... Michele Lea

 

[Romey]

Thanks y'all
Yosemitegirl: my actual diagnosis was listed at "severe Crohn's / colitis"
I don't know the CT results yet. He showed the colonoscopy pics in the diagnosis and my colon to me looked like red red hamburger . Scared me I will tell ya, but I do feel I'm making slow progress.
However the night sweats and the fact I'm typing this at 2am shows I'm still battling fatigue and most likely prednisone insomnia .
My wife is cold natured and appreciates my night time fever bursts till I become to sweaty. Well, gotta appreciate the little things, no need for turning on an electric blanket but a lot more tee shirts to wash

 

[scottsma]

Hello and welcome Romey.I just wanted to say I enjoyed your post,but at the same time I wish you hadn't had the need to join us.You seem to have most things under control,hopefully the other stuff will get better soon.The best thing,apart from your supportive wife,is your sense of humour.That will see you through most things in life.Long may it last.

 

[yosemitegirl]

So sorry Romey that you have Crohn's colitis or Crohn's and colitis. Yep... have seen that raw hamburger pix up close and personal... after surgery (X 10) to remove it. Supposedly.

Yes, once you are this sick you do appreciate the little things. Like eating, sleeping, having a life away from the bathroom, etc... I could list 100 more. Now many are luxuries and never taken for granted.

This is how I have done the 45 years since diagnosis... with as much courage, grace and humor as I am able. Humor is a huge thing to keep intact, even with a disease that tries to rob you of it. Some days are overwhelming and I don't do it as well. That's okay as long as I don't get stuck there.

Again, I wish you the best. Michele Lea

 

[Allison M]

Welcome Romey. I'm new too. Glad you are feeling a little better.

 

[Romey]

I had my follow up with my GI yesterday. Biopsies and CT scan confirmed the colonoscopy diagnosis of severe Crohns/Colitis. My weight is up a little, which is good. I've responded to the meds, but GI says I need to go on Remicade or Humira, whichever the insurance co. Favors ASAP.
He says if Remicade, initial treatments will likely be every 6 weeks for 2 years and I will remain on Apriso indefinitely, while weaning off the Prednisone of course.
New insurance starts April 1st: Thank God!

My big pain in the arse issues (boy howdy) are good old fashioned hemorrhoids not prolapsed, so I'm setting up to have them snipped and can't wait!

I'm going to get a B-12 shot today.

He did mention that patients whose initial attacks are severe like mine, usually have severe flares when it rises in the future. Not borrowing trouble, heck I gotta get out of this one first, then hopefully the Remicade or Humira whichever one, works and keeps me in remission.

Glad for this site.oo:oo:

 

[yosemitegirl]

Romey... So glad to hear you have some answers and a plan. So much better than 45 years ago when I was sent to psych, feeling so sick and crazy. Or was told Crohn's patients were "nervous," then dismissed. Well, yeah... wouldn't you be nervous, anxious dealing with all the crap (literally)? Idiots...

Remicade and Humira have been showing great results for many patients. Humira can be done at home with injections. I gave them myself when they had difficulties finding veins for Remicade. Have given B12 myself since 1st surgery in 1977. So much better than a doctor appt.

Hopefully you will get off Prednisone and achieve a clean remission. Though all of us know the % of flares and surgeries are statistically high, we just go day by day. And always appreciate the little things today.

Take care... keep us posted. Michele Lea

 

[volfan4life87]

Welcome fellow Tennessean! I've just recently stumbled across this site as well and it seems to be a great resource for folks fighting this dreaded illness. I've had Crohn's for about 10 years now and have been diagnosed and on Remicade for about 9. If the medication works, it is truly a life saver. One thing I would like to ask, since we live in the same region, do you have bad allergies or a history of sinus infections? If so, you should be aware of the risk for developing chronic sinusitis once you get on remicade. It was a major problem for me after getting on remicade but thankfully after a couple of sinus surgeries and allergy meds, I seem to be doing ok.

Best of luck in your struggles - keep up the good fight.

 

[Romey]

Hello Vol!

Yeah I do have hay fever in March and October each year. Mine have been kinda mild bouts treated with Allegra and Singulair as needed. Interestingly , during my initial flare I'm now in, my allergies are gone and now is when they're usually bothering me.
I'm ready to begin the injection drugs April 1st when new insurance starts. Hopefully no side effects. My GI is indifferent between Humira or Remicade. Says costs usually dictates decision. My input is Humira because of convenience and he thinks Humira has a "few" less side effects.
More to come......
Thanks