Feeling Isolated

[Curtis123]

I'm losing it. I've been dealing with Crohn's disease since 2004 --Doctor's have debated UC/Crohns--Doctors have "experimented with different drug regimens"--the night sweats--weight loss--anxiety from being away from a bathroom--lack of energy--a month in the hospital--office visits--etc...but during all of this in the back of mind (what kept me going) was the hope that one day my GI would suggest Surgery as a remedy and everything would go back to normal, even if only for a period of time-I would be able to "catch my breath" so to speak.

Well I had a Bowel resection (two thirds of my large intestine gone) and post-surgery tests came back negative for Crohns. I wore a colostomy bag for five months...regained some weight, thought to myself when I was "reconnected" I'd live a normal life and never look back...its been a month since reconnect surgery and I'm experiencing a total "flare" only this time I think my sphincter is so out of practice I have no control--I have a constant urge to go,and actually "eliminate" atleast once an hour. Worse yet I lost that internal mantra "surgery will heal all...one day this will be a distant memory."

I feel guilty for putting my family through this. I'm embrassed in front of my wife, I feel like a decrepit old man at the age of 36. I get pains in my lower back (tailbone for some reason) At times an odd pain at the top of my right leg which makes it hard to get in/out of bed or walk. I know this is hard for her too. There are days when I just wish I could climb into a hole and wait for the "storm" to pass then get on with life.

I have a three year old son...how am I supposed to keep up with a three year old, how am I supposed to plan for his future when all I can focus on is getting through the day. I know there must be others who have gone or are going through the same internal dialogue. Tell me I'm being dramatic...tell me its too soon after surgery...tell me its a part of the healing process...but be honest those of you before me How do You do it?

My next visit GI will Discuss Tysabri b/c all other meds have failed. Since he called with the results of my last colonoscopy, he has placed me on predisone 30mg...I wanted to ask for a Norco script, but did not. Norco helps mentally as much as physically...how would a doctor react to that statement if I confided in him? I'll probably be labeled and never prescibed it again, right?

 

[KazT17]

Hi Curtis,

So sorry you are having such a bad time. I was told I couldn't be re-connected as I have Crohns, not UC. They told me the Crohns would return with avengance if I did. Do you think this is the case with you?

How did you cope with the colostomy? I would never go back now, my ileostomy is just so easy - I don't know if I am just lucky or if most people find the same. I never have to worry about the D or all that embarassment ever again.

I had my ileostomy last year and am going in for a completion proctectomy soon. The output from an ileostomy is different from a colostomy, so I am not sure, but I feel mine is easier to deal with.

I hope they can help you with some medication, but if not, would you consider further surgery?

Try to keep positive, it must be so hard after all you have been through, but you are young and have your little one to focus on.

You will get there I am sure,

Lots of luck, Kaz xxx

 

[Angrybird]

Hello Curtis and welcome to the forum. I am sorry that you are doing well at the moment, it is terribly disappointing when you have gone trough surgery and for while feel good and then the tum decides to play up How long have you been on the steroids? Also have you had any of your vitamin levels checked? If not definetly as your doc to get these done (especially B12) as it is common for us crohnies to be deficient in these and having a low B12 can affect how you feel both physically and mentally.

I am glad you have joined as there is a great bunch of people here and we 'get it' when it comes to this disease so anytime you need to vent we are here.

Wishing you better soon :hug:

AB
xx

 

[David]

Hi Curtis and welcome. I'm so sorry you're having so much trouble, my heart goes out to you bud

I agree with Angrybird above about the vitamin B12. Have you had that checked? If so, what is the specific level? If not, GET IT DONE.

Also, with what you're describing regarding your diarrhea, I suggest you give this thread a read.

We're here for you bud.

 

[Curtis123]

Thank You

Let be begin by thanking each of you for taking the time to read by post (rant). I'm usually and upbeat positive person...I re-read my post and figured thats not a true representation of myself, but after hearing that Crohns is back so soon after surgery I took my GI's advice and found a message board/community to help ease my anxiety and my post was the product of my fears.
I think getting that all out helped (even if it sounding like I was whinning). I'm in a much better place mentally today.
I'll keep reading posts, taking notes on what treatments/diets have brought about remission for others and tailor day to day habits to mirrior those who have been successful.
To KazT17---"the bag" was not to bad...I had to sleep on my back, and worry about becoming too full in the night, but a small price to pay. I don't think I would go down the Surgery road again...we'll see.
To David/Dustykat---I'll ask my GI about "psyllium Husks" ...its counterintuitive but I have a constant urge, diarrhea (but only a small amount comes out) then painful contractions --as if my body is trying to force out the rest, but nothing "drops". I'm afraid that stool already takes too long to exit that my body will already extract too much water and I'll have a blockage of some sort and if I add anything to my diet that extracts water from my stool it wil only lead to a complete block. Yikes!

 

[maria]

I think it's too soon. A body doesn't totally heal for at least a yr. Especially since they had to "rewire" you. Your body has to be trained. I know dealing with the symptoms is hard to deal with and easier said than done. But I would give yourself a little more time. Try Some baths or hot showers if not baths. Just always tell yourself you will get through it. It's a bumpy road now but soon it will be smooth.. It's temporary.. I think your strong.

 

[tots]

I am sorry you are having such a hard time.

Just know it will get better!


Lauren