Final Straw

[TerriAnn]

I have been suffering with colitis for 16 years. I have had many "accidents" in my life. Last week I had a horrid accident in my mothers car, and it was the last straw.
During the past 16 years, I have always remained up beat, positive, and didnt let my disease get the best of me.
My relationship with my mom is not like most. I keep a distance, and dont let her get too close because she can't be trusted to take care of me. This was such an intimate, personal and awful thing to happen to me at that time.
Maybe that has something to do with how emotionally devastating this accident has proven to be.
Since last week, i have been crying, and sad, alternating with mad. I have no interest in my usual activities. I have no interest in anything at all.

I am sick to death of being sick, being the food cop over my plate constantly, fretting about what to wear (in case ) of accidents, driving with margarine containers in my car, just the whole damn thing. I am sick sick sick to death of it.
I think i need to find a counsellor or a support group that is face to face.

This feeling of sadness, anger, depression is so very unlike me. i'm almost afraid of the intensity of it.

 

[UnXmas]

Hey, sorry you're feeling so awful.

Just a practical suggestion - have you tried incontinence pads? I know the idea of them isn't flattering, but they do usually work and you can get ones that are quite discreet, unless you wear really tight clothes, no one would know you're wearing them. I wear them all the time now "just in case", and it does free me a bit from that constant worry about when you'll get to a bathroom.

You've obviously been a very strong person to have remained positive for so long until now. Family relationships can be really difficult. It's completely understandable that there's only so much you can take before it affects you. But it may be this is just a temporary stage, and that you'll be able to get back some of the good spirits you had before.

I don't have any helpful advice, but I think I understand a little of what you're feeling, and I hope things get better for you soon.

 

[TerriAnn]

i have tried them, the situations are usually so explosive that they are useless.
Without going too far, i can tel you it was bra strap to floor mat in a matter of seconds.

I appreciate the kindness in your reply.
I guess it just takes time and I will feel positive again. Its my usual nature so this "down" feeling cant last - i pray

 

[nogutsnoglory]

I'm so sorry that you are feeling this way but know its not forever. Right now I'm
In an adult diaper because I'm afraid of accidents. I'm a young guy! Have you tried diarrhea suppression pills and diapers?

There is also an Ontario Crohn's chapter. Maybe you can call and get involved and see what they offer?

http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.6374677/k.2B6A/Contact_Us.htm

 

[Jim (POPS)]

TerriAnn,
I'm so sorry you are going through this.

My wife HAD UC for over 30 years. She also has the same name as you. Terrie Ann. Now she is CURED of UC. Yes there is a cure for it, but some people will not op for this.

My wife had a Jpouch for over 25 years and then the Dr. said that its time to get a "ilyostomy bag" for the rest of her life. She was so floored when they told her that BUT, she now says its the best thing she ever did. She can wear anything she wants, eat anything she wants and do anything she wants.

I have crohns and had a temp iylostomy bag and it wasn't that bad at all.

There comes a time with Colitis when you may want to think of this. As I said, my wife is so happy she did this.

I pray you get better soon.

Jim (POPS)

 

[TerriAnn]

Jim, Thanks. I have thought about it, but i just can't get myself there yet. I'm still relatively young, and in a new(ish) relationship. However, I have had to alter my life for the disease, a GREAT deal already and whoever knows where it may lead. You are not this first person to suggest this to me.

I appreciate your response. Thanks much

 

[Farmwife]

I'm so sorry to hear about the hardship. You've been dealing with this for so long, it's no wonder you're tired.
I don't have much advice. My little girl has just started her journey of colitis.
I hope you find comfort and support here.

HUGS

 

[mwkwmn]

I am so sorry that happened to you. I know the feeling of having accidents and they are very unpleasant. I don't have much advice but just to let you know your not alone and I hope things get better for you.

 

[purdueCrohns]

What meds are you on?

 

[TerriAnn]

I have ulcerative colitis, not crohnns. Salofalk enemas, fecal transplant enemas (probiotics) , mesavant (8 x 400 mg pills day) vit d, calcium, fish oil, and oral probiotics.

 

[723crossroads]

:ghug:Have you tried Questran or Cholestyramine for the diarrhea? If not, ask your Dr. for it. It was created for high cholesteral but it works great for alot of us who have D so bad. It works for some, not all. But it is worth a try. Sorry you are so down hon! I totally sympathize and hugs to you!:ghug::heart:Not sure if it works for colitis. My Mom has ulcerative clitis and she used some kind of steroidal enemas and they really helped. She is in remission for 3 yrs.

 

[purdueCrohns]

Maybe you should try getting a second opinion from a different doc.

 

[Joonie]

Hi, I'm so sorry you feel so bad. This disease is an awful one and I think everyone who reads your post will totally sympathise with you. I wish I could do something more useful but just wanted to say, you are not alone :ghug:

 

[ccec213]

Hi TerriAnn,
Goodness, I feel your pain. I've had severe Crohn's since I was a child and the amount of suffering it inflicts on us is staggering.

Have you considered therapy? There is absolutely an emotional/stress component to these diseases, and I am furious nobody brought this up to me earlier. Find some modality that works for you: a counselor, a psychologist, yoga therapy, biofeedback, whatever. In my late 20s, I'm just now learning coping mechanisms for decades of humiliation, emotional and physical pain. I can't recommend therapy highly enough.

We're all complex beings, far bigger than just our guts: calming and coping with the rest of the experience is so necessary, I think. I wish you such luck.

 

[xSophiexx]

I am so sorry you are having such a rough time .. I know alot of people have had success with Psyllium Husks to control diarrhea one that springs to mind is Dusty - I think her daughter uses these (Sorry if im wrong!) Search it in the search bar.. worth a try?!

 

[TerriAnn]

Thanks, its so nice that you all commiserate. I have thought about finding a counselor who specializes in chronic diseases. I think it would help.

and, yes, i use the steroid enemas for years. I hate the steroids. I'm hoping that the salofalk anti inflammatory enemas with the fecal transplants will be enough.

It doesnt help that I have been on a carb binge for about 2 weeks. So much of my issue can be helped by what i eat, but i have a great deal of trouble with this part of it. I get to point of very low carb, good health and then i self sabotage.

I will try the psyllium husks again, that's a good idea. They worked for a bit, (then they stopped working) but they might again.

I think I might be starting to come out of my "funk" maybe? But, then again, I havent left home since it happened. What a way to live.

 

[723crossroads]

I really hope then that you get some help now!:ghug: