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Posted 8/23/2007 1:17 AM (GMT -7)
The last 3 days have been real tough, I have lost blood and mucus, been on the kitchen floor curled up in a ball with the stupid tummy pains, but if that wasn't enough, my feet, knees, hands and wrists are throbbing like mad, I can hardly move my head because whenever I do I get shooting pains all round my neck. 
 
To make matters worse, I am very snappy, I keep verbally picking at Mandy, she has taken this week off work so she can be home with me, but I just keep finding excuses to argue with her.  Every day when I was in hospital not only was she working 12 hours a day but she was driving the 40 minute round trip to drive to visit me in hospital twice a day!  Not one of my family including my Mum or Dad bothered to come and visit me, their family member who was dangerously close to being permanently paralysed!!!  Mandy's Mum and Dad offered to come over immediately even though they had just been to stay with us prior to me going in hospital, I guess that really says it all, one other thing, I got a get well card of Mandy's Mum and Dad, maybe I'm such a bad son and this is my parents way of letting me know?
 
I actually broke down in tears yesterday, I am just so down about the pain, I know I'll get through this, but I'm just on a bit of a downer at the minute, I have never been real close to my family, I was a bad kid :-( and I never expected anything from my family, so why am I so down, whenever any one is ill in my family, I get back home as soon as I can, after calling interflora and sending flowers and a card, that's the right thing to do I know it is!  I don't expect anything from my family because you know, my parents split when I was 2, I admit I was a bad kid, but if my son was ever told what I was told by a surgeon, I would walk a million miles to be there for him whatever he had done wrong in life, which I'm proud to say is very little.
 
I'm sorry to be typing this down, but I just had to get it off my chest.
 
Love to you all.
 
Take care.
 
Dave
 
 
 
 
Dansky Co-moderator UC forum
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Posted 8/23/2007 1:26 AM (GMT -7)
I'm so sorry you are having such a difficult time, but i am so happy you can turn to this forum to express your feelings. i know it is so hard, this UC business is hellish on the family as well as the patient. As someone who has put her parents through hospital hell and felt guilty about hospital bills and GI bills and the general stress i have caused them, all i can say is they would do it over again in a second if it meant having me around. of course, Mandy wants you to be comfortable and she is just trying to make that happen. You didn't ask for this disease and you don't have to apologize for it. Just know that we (and your family, of curse) are here for you and wishing you the best. You will be in my thoughts and I hope this period ends soon.
take care,
B
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
 
 
probiotics

Posted 8/23/2007 5:34 AM (GMT -7)
You know Dave, I don't believe that kids are bad....I believe that kids react badly because of the effects the parents have on their lives. I gave up on my family a long time ago and I don't expect anything from them. Luckily though, I have my hubby's family now because they are the best people that anyone could ask for. I very rarely talk to my dad much and my brothers, hmmm well lets just say I don't want to talk to them. Please know that it was nothing YOU did as a kid to make your parents act the way they are. I know it still hurts that they would react to you this way. You can not change them. As long as you have the love of your wife (which it sounds like you definately have that) and your son - then the rest of the world shouldn't matter.

Hang in there Dave and vent anytime you want. We are here for you, even if we are thousands of miles apart - isn't that the joy on the internet?
 @--->--SHERRY--<---@
Left sided Uc since '92 - meds - Colazal, Canasa (when needed), 6MP (50-75mgs), Forvia, Biotin (IN REMISSION - sort of!)
Secondary Raynauds Syndrome '04  - meds - Norvasc
Fibromyalgia '06 - no meds
Severe seasonal allergies - meds - Allegra 
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@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 

Posted 8/23/2007 6:05 AM (GMT -7)
I totally agree with Red, kids only pick up on what they are shown.Never blame yourself buddy, your such a good guy to us all here and you know we are always here to help you support you, the same way you do for us.
Your so lucky to have such a caring wife and i believe that the response of her family shows how loved you are for being you. Never mind about uncaring family members, care for those who truly care for you!!!!Its a lesson that this disease has showed me and i'm grateful that having this disease and being so ill made me realise who my real family and friends were. Your too ill to get stressed thinking about other peoples lack of support. Thats their weakness and their problem, i think they just don't realise how good of a man you really are.
You get yourself fit buddy and be sure to keep us informed.You know i'm always here for you and all your HW family will be here for you too.
Chin up Soldier:)
Your good mate Marty
 KEEP THE FAITH.
Tomorrow is gonna be better than today!!!!!!!
 
Pred60mgs/rowasa/asacol/proctifoam/omoparazole/robaxin
 
 

Posted 8/23/2007 6:38 AM (GMT -7)
I'm sorry you're feel so down, Dave. I can imagine recovering from the surgery is hard enough without having a full on colitis flare :(
And I totally understand why you're so upset about your parents. If I called my parents with that news and they weren't on the next plane to see me, I would probably be heartbroken. I think it's just natural to expect a certain level of support from our families. Unfortunately they don't always meet up to our expectations. I'm sure they're not trying to punish you! Maybe they just didn't think it was that bad? I don't know. Have you tried calling them? As for your wife, I'm sure she understands. She has to know how much pain you are in and how hard it is for you, and the fact that she's spending so much time caring for you shows that too.
I noticed you're on citalopram too, have you thought of maybe asking to increase your dose for now? Just a thought; maybe it would help you get through this time easier?

Anyway, keep posting and venting! You know we don't mind. I hope you start feeling better soon. Here's a flower for you: @->--- :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
Primadophilus Reuteri
20 mg Citalopram (for depression/social anxiety)
125mg Imuran
10meq Potassium Cl
 

Posted 8/23/2007 6:48 AM (GMT -7)
I am not a wordy person, Dansky, so I would like to offer a hug to you! 
 
You help so many people on this forum and are so wise.  As for the bad kid thing, think you were reacting to your home atmosphere created by your parents.  Don't beat yourself up.
 
Hope you are feeling better soon.  Take care.
 
 
Dx:  2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes).
 
 

Posted 8/23/2007 7:46 AM (GMT -7)
what people don't understand, they rationalize however they can. you have done nothing wrong. you cannot change the way other people react. bless you, and we are here whenever you need us.
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
 
 
probiotics

Posted 8/23/2007 8:54 AM (GMT -7)
Sending big hugs your way Dave.(((((((((((HUGS)))))))))))))
Hang in there

Janice
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
GNC Probiotic
Forvia
calcium 

Posted 8/23/2007 11:12 AM (GMT -7)
All seem to understand too well....what awesome words of advice!
 
Dave, I've been where you are and totally understand the physical and emotional pain of recuperating after such a painful surgery.

Rejection by parents is (I believe) the most horrible realisation and damaging to our self-identity, and it seems to be normal that when we're feeling physical pain...the emotional pain that seems to match it just keeps coming back to remind us. Pain has memory...

Your suffering won't change your parents...they do NOT know what to do since they probably don't have the emotional integrity to deal with even themselves. Your "badness" is convenient for blame..that's your role, and they can't see beyond that.
Having the expectations that they cannot fulfill will only leave you more hurt....and sometimes we subconsciously do that to ourselves to feel more pain. I've done it. Therapy helped..looong therapy. My parents also have since died...so dealing with stuff without the reminder of rejection allowed me to heal.

Actually, I put some of my painful emotional episodes into poems and put them away...helped a lot.

It's good for you to express what you feel...to many of us, we relate. try not to put your parents on the pedestal to be the centre of your life. You may never get what you need from them...and that just taints the awesome parts of you.

You need to heal....and the adult in you has to give the kid in you the acceptance and permission to move on.

Healing thoughts sent your way. You best work on that winning lottery...you'd be shocked as to how many of us show up....I know I would..and I hate to travel!!!

Heather xx

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Posted 8/23/2007 11:48 AM (GMT -7)
sorry to keep interjecting, but i also wanted to add that parents seeing their children in pain is heartbreaking, they often don't know how to deal with it and end up pushing away those who they care about the most...
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
 
 
probiotics

Posted 8/23/2007 4:34 PM (GMT -7)
Dave hang in there...........keep believing that better days are coming and I truly hope soon for you and your lovely wife Mandy.

I so understand your pain and frustration having witnessed it with my husband when he was at his worst. There isn't much that can be done to help other than knowing so many of us are out there praying for you and that every one of us does care.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 starting to feel somewhat normal 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots.

Posted 8/23/2007 5:06 PM (GMT -7)

Dave, sorry you are going through such a hard time right now. Glad we are here to let you vent. We all come with baggage from our life (I always joke to my kids that I am giving them something to talk about in therapy).  Don't dwell on what type of child you were, be proud of the man you have become. I've never even met you but I can tell you would be someone I would want as a friend! Who knows why your parents act disinterested. It is not you, it is them.

I have a very good relationship with my in-laws. However 16 years ago my husband fell off a ladder. He was leaking spinal fluid. The doctors gave it 10 days and said they would prep for an operation on the 11th day. Miraculously the spinal fluid stopped leaking on the 10th day. My in-laws never came to visit him in the hospital (although my sister-in-law was there alot). They never came by to see how I was doing or check on the grandkids (2-1/2 and 7 months old at the time). My mom came by everyday to either watch the kids so I could go to the hospital or she would spend time at the hospital with my husband. The weekend before the doctors were going to make a decision about surgery, my mom called my brother and sister from out of town to come see my husband. (Who knew how the surgery would go?)  I know my in-laws didn't think my husband was a bad kid. They just chose to ignore the danger he was facing. They never understood the severity of his accident.

I am sure Mandy knows that your actions are not really you right now. In a moment of calm, just let her know how much you appreciate her strength.

I hope you feel better very soon. Lots of hugs for you!!

--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
Rowasa - 7/07 tapering slowly
 
hydrocortisone enema - alternating with Rowasa; 3/3/07 - began to taper off hydrocortisone sloowwly! No more hydrocortisone enemas!
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
Keeping our fingers and toes crossed!!

Posted 8/23/2007 8:24 PM (GMT -7)
I've actually had the pleasure of meeting Dave and his wife Mandy in person, and I can tell you that they are two lovely people. Dave has been a very good friend to me and I cannot tell you the countless hours he has helped me through some very tough situations, something I will never forget. What Bennie said is true Dave....remember the man you have become; because you've become a wonderful friend to me and many others. Everyone before me has had some incredible words to say and I second them all. Thanks for being there every step of the way....now it's time for me (and us) to be there for you. ((HUGS))
Carol

Remicade - will have my 18th infusion on July 12.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

Posted 8/23/2007 9:24 PM (GMT -7)
There is no way we can take the pain away from you. I wish I could but it doesn't work that way. I was fortunate to have loving and supportive parents who cried with and for me when I was in pain. My dad prayed to exchange places with me, but he couldn't. And obviously I would not wanted that.

I have worked with kids (as a teacher for four decades) who unfortunately did not have loving and supportive parents. Like you they triumphed over many difficulties in spite of their situations.

You need to love yourself and accept that this too will pass and know you are even more special than most. Rising above bad circumstances is what character and heroism are all about and it is clear you have the character of hero.

Hang in there.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm

Posted 8/23/2007 9:37 PM (GMT -7)
Dave,
Thanks for sharing what's going on. My heart goes out to you for all that you're going through. Can your doctor give you some medicine for the pain? As for your parents, it's too bad that they haven't gotten over things that happened a long time ago. Who didn't do stupid stuff as a kid? You shouldn't have to deal with that right now. Luckily, you have a wonderful wife, son, in-laws, and friends who love and care about you very much, and they are your true family.

Hope you feel better soon!
Cecilia
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