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Seems to be Feast or Famine...Anyone else?!

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Ulcerative Colitis
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Posted 1/22/2010 3:02 AM (GMT 0)
Hello All!

For 2+ years I have suffered from ischemic colitis, ulcerative colitis and intussception. Now, in the past 3 - 4 months everything has locked up hardly going to the bathroom at all due to the stricture(s). I am in so much pain I can not function without being on vicodin or percocet which I hate.  I am still having blood in my stool.  I noticed some people are mentioning how their muscles or bones hurt too. Mine have also been doing this but never thought there was a connection.

The Drs are going back and forth as to what to do. Surgery vs no surgery. My family Dr feels I am going to have to learn to live with this. She is also worried that if I have a resection surgery, it will lead to another, and another ...etc.

Please help me if you have experienced this too. Do you have to just live with this? If so, how? Has anyone had the surgery? If so, has it lead to others?

Sometimes I feel like I am loosing it, can't quite crying or get a grip.

Thanks to all who answer.

Posted 1/22/2010 3:27 PM (GMT 0)
bump
Posted 1/22/2010 4:45 PM (GMT 0)
I don't understand. I am sorry, what is bump? Thanks!
Posted 1/22/2010 6:56 PM (GMT 0)
just means moving the thread to page one again so that it doesn't get lost and others have the opportunity to respond.


Your situation is quite unique and your question specific. I can't answer since I have no experience with what you've been through.

It's heartbreaking to hear what you're going through. I hope the docs make a decision soon to help your suffering.



Are they thinking to remove your entire colon or just the stricture?



quincy

q
Posted 1/22/2010 7:20 PM (GMT 0)
Just a portion but the 2nd opinion surgeon I went to (which was referred by my surgeon) doesn't believe it is a stricture and wanted to go into a total different direction. Although he never reviewed by records or CD's. Told me he would do it later. Because the test he wanted me to do was putting a thick paste up my bum, I was afraid it would get stuck in the stricture (like the pill cam did) so I cancelled the test with him and called Mayo in MN.

Thank you so much for responding and the kind words. I will be fine in the end, I know God will take care of me.

I am hopeful that someone can offer some words of wisdom.

Again, my heartfelt thanks.
Posted 1/22/2010 7:27 PM (GMT 0)
Oh you're welcome! Have you been to the Mayo yet?

I find it odd that doctors say yes you have a stricture and others say you don't.

Is your UC limited or throughout?

Are you on any meds for UC?

q
Posted 1/22/2010 8:05 PM (GMT 0)
I head to the Mayo March 1st. They told me to plan on being there for 5 - 7 days. My parents, God love them, are taking me. This is the time of life I anticipated taking care of them.

I agree, it blows my mind the tug of war between dr's I have been in since June 2007. Clearly, I do not think surgery is the way to go if there are other options.

My UC is on the left side - decending colon which is where the pill cam got stuck and all 24 sitz markers. This is also where the ischemic colitis was.

My Dr has tried a variety of meds that either made me breakout into a bad rash or caused more cramping. Currently, I am on Miralax 1x per day, Align, Fibercon 3x's per day as well as Donnatal 1x per day. So far no changes but I feel like something is changing inside. I am not able to wear my clothes..only sweats that I can control the waste size because of severe distention.

Enough about me... are you okay or doing better with your challenge(s)?

Thanks again for reaching out to me. This really helps!
Posted 1/23/2010 7:37 AM (GMT 0)
Is the stricture in the same area as the UC....and is this the same area as the intussception plus the ischemic colitis?

I'll be honest....I'd give serious consideration to have my colon out.

quincy
Posted 1/23/2010 1:19 PM (GMT 0)
I agree with Q with this one, if you having so many issues with your colon and in so much pain, maybe you should look into having your whole colon taken out and not just resections. There are many many people that have their colons out and are living perfectly normal and healthy lives again. Please check out our Ostomy forum if you haven't already done so. What you're going thru does not sound pleasant at all and my heart and best wishes go out to you.
Posted 1/23/2010 1:27 PM (GMT 0)
Oh my goodness, I'm so sorry to hear you are in such pain.

And though I'm fairly new to this I'm inclined to agree that you might want to look into getting your whole colon removed.  It is just impossible to have quality of life with such pain!  And I know from what I've read that the surgery is no picnic but once you've healed it seems you'd be in much better shape.

I truly hope you can get something figured out and get a game plan (I love game plans)

Posted 1/23/2010 5:53 PM (GMT 0)
Surgery isnt easy, but its so much better than UC and living in pain!
If you have questions about it feel free to ask!
Posted 2/10/2010 4:41 AM (GMT 0)
I appreciate all of your responses. My thanks to everyone.

I have researched strictures and the options, surgery being one of them. I have had 3 abdominal surgeries so I am somewhat prepared if I need to have another. My biggest concern is what I have heard and read about resection surgery and that is once you have one you will have to have others. That scares me a bit.

Has anyone had the resection surgery and how did it go for you? Was the Dr able to do it laproscopic or did they have to do it open?

Qunicy, yes all of my action :) has been on the left side, although the last colonoscopy I had also showed an abnormality on my ascending colon as well.

Several Dr's have told me that I had a very complicated case. That is another reason I think I would rest easier if I had a surgery so nothing is being missed that could cause me more problems down the line. I am wondering if I have scar tissue from the other surgeries I had. I understand that scaring is something they can not determine unless the Drs do surgery.

2.5 more weeks and hopefully, will begin getting some answers.
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