Colonic Intertia? Pain in the Butt...Literally.

Here is my story.
At the age of 14-20 I suffered with bulimia with anorexic tendencies. At the ago of 16 I had EBV prominent MONO. A few months later I was then diagnosed CFS. That was 3 years ago. Within the last year I had my Gallbladder removed for severe inflammation and 3% function. I have also been diagnosed with POTS (dysautonomia), Peripheral Neuropathy, IBS-C, brain/kidney/ovarian cysts, severe GERD, ect.
So for the past 3 years I have been dealing with severe constipation. I have been seeing a Gastro and he since diagnosed me with IBS. When I first went to see him my BM were normally 15-20 days apart, but as time progressed it increased to 25-30 days without a BM. I was given Linzess to help but it really didn't do much but cause cramping. I have tried stimulant laxatives, senna laxatives, digestive aid tea, Linzess, Amitriptyline, FODMOP, dairy reduction, fiber increase, fiber supplements, antioxidants, enemas, ect. Every single thing just ends up not working. No matter what I eat I get severe pain, constipation, gas, bloating, intermediate sharp pain along with continuous tenderness. The last 2 weeks just seem to be getting worse. I'm to the point with my GERD that I can't even keep any food down what so ever so I'm on a liquid diet, which really doesn't aid the pain at all.
I do see my GP friday but I just feel so alone through this. My sister doesn't understand and my partner just says "Ut'll get better", "You'll get healthy soon", ect. Makes me feel like a sympathy case...like I'm just going to go back and forth with my doctors over and over and they will just give up on my case.

What do you think?
What's your story?

Post Edited (KaeRay9112) : 11/4/2015 2:55:02 PM (GMT-7)

So sorry you are going thru this.

Did the Linzess help at all? Or any other meds, etc? I was on Linzess for over a year and had some trouble getting it to work. i ended up having to do 1/2 dose of the colonoscopy prep every 10-14 days for an entire year (before I had my colostomy and things finally work better now.)

I feel your pain. Other than adding the colonoscopy prep, I used to take my Linzess along with Miralax and Dulcolax also. That combination somehow managed to get me thru. Sometimes, more fiber isn't the answer. It can bulk things up so much that the stool actually ends up too hard to move. I know for me I did better (still do) on a lower fiber diet.

I also understand about others just saying "it will be ok" and stuff like that. They don't understand. No matter how hard they try to and/or want to understand, they can't unless they have been in your shoes. they can still be supportive, but it's up to us to let people know what we need, and that comments like the above are not helpful or comforting to us. It's not easy, but it's like they say, "we have to teach people how to treat us". We have to give them feedback about how we feel, what they do or don't' do, say or don't' say. There's no way for them to know otherwise. But I get it, it's like they don't take you seriously--it's something they can't see and doesn't seem (to them) to be something that would really affect your quality of life, but it does. It affects your QOL more than anyone could fathom.

Keep posting, keep fighting, and keep requesting help. The squeaky wheel gets the grease. If you don't keep asking until someone really helps you, they will assume things are ok. Don't give up. We're here for you.


Hugs,

Sunny13

Sunny. I'm glad that worked for you. I might try doubling up on using Linzess and Ducolax. Both of them by then selves only causes more bloating and cramping.I am glad you found a momentary remedy until you were able to get a colostomy.
Yeah I guess expressing how it makes me feel would help, especially since keeping quiet does nothing. Thank you for the advice and understanding.
Ahh Answers~ I'm glad you re felling some bit better with easier management now!!! It's crazy how those preps worked, sorry it was so difficult. Enemas work for you? They actually are painful and sometimes even cause rectal bleeding for me...its not the best thing to see when you are already completely backed up. Hahahaha. I remember when I had my first coloscopy...the Miralax and Gatorade mix was a horrible idea...after two hours I couldn't keep it or anything down. Ended up taking a crap ton of laxities and sweating it out.

Post Edited (KaeRay9112) : 11/8/2015 12:26:45 PM (GMT-7)