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Please help with advice for my slow transit frustrations

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Posted 12/24/2011 5:37 AM (GMT 0)
My name is Brittany and I'm 22 years old.  I've had constipation issues my whole life, but about 3 years ago it got so bad that I cannot go to the bathroom on my own at all.  I have to take up to 17 capfulls of miralax in order to go.  I've tried almost everything, but nothing else seems to work.  Not even the 5 percriptions i have just for my illness.  These medications don't work at all and I have also deveopled severe pain that occurs everyday for the past year and half.  Up to 4 times a week the pain is so bad I scream. I noticed changes in my body that are hard to deal with too.  My stomach swells so big a lot and I'm used to being 5 ft 105 lb but this illness is making me gain some weight and that is so uncomfortable on my short stature.  I had to take medical leave from school and I've begun to feel so hopeless, tired, angry and so frustrated.  I was diagnosed with slow transit in Boston and was supposed to have my large intestine removed becausethe whole thing showed slow transit and connect my small intestine to rectum in order to avoid bags.  That surgery was cancelled due to the pain I began to have.  I am going to the Mayo Clinic and hope that they can help me.  I would really really appreciate it if anyone has any advice or thoughts on the surgery that could maybe give me my life back or even someone who knows how I'm feeling.  I feel like my body is full of garbage and I have no control over it anymore.  Thank you so much.
Posted 12/24/2011 11:37 PM (GMT 0)
Brittany, welcome. So sorry to hear what you're going through, it sounds very hard.

Where were you going to have surgery in Boston? I had mine at MGH. Did they give a time frame on when you could have surgery or on what had to happen first in order to do so? Where is your pain?

I had the opposite problem, so I don't know that much about constipation, but there are others here who have had surgery for similar problems, and hopefully they will be along soon. There are a lot of folks here who were really sick and got their lives back w/surgery .... and a lot of us felt out of control. In my case, I had to go to the bathroom 20 times a day and sometimes had accidents and had all kinds of other things happen .... but surgery has given me my life back.

Hang in.... there is hope.
Posted 12/24/2011 11:54 PM (GMT 0)
Brittany,

I think the testing at the Mayo Clinic is by far the best. I would go there. They do a FULL work up. VERY important, to have your pelvic floor and anorectum function tested. They do that at Mayo. Totally painless. If the pelvic floor and anorectum have issues, then hooking your small intestine to your rectum will not work. You would need to go straight to the ileostomy bag. I would highly recommend testing at Mayo. Had I gone THERE FIRST I would not have gone down the road I went. Good luck, Rosemary
Posted 12/26/2011 10:59 PM (GMT 0)
Brittany, I suffered in the same way as you for a year and a half before having the colectomy surgery in 2007. My colectomy worked perfectly for 2 years before I started being constipated again, and now I have an iliostomy. I had both of my surgeries at cleveland clinic Florida.
Posted 12/27/2011 3:17 AM (GMT 0)
Blueglass, who did your surgery, that is here I am going I think, and I forget, why no pouch. Is your wound improving?
Posted 12/27/2011 1:58 PM (GMT 0)
Pat Sylla did my surgery, and she is awesome. She does her research on minimally invasive surgery, and she did it lapro. I don't blame her for the butt wound complication, as I was on a ton of prednisone, had an abscess (which she came in at 10:30 pm to fix because she didn't want me to wait until the morning or to have someone else do it), etc.... Kerri Giannino is my stoma nurse, and she is awesome too.

Pat did the second surgery with a plastic surgeon, don't think you need his name at this point.

I didn't have a pouch because I most likely have Crohn's, and I wanted to be done w/surgeries and didn't mind a bag. I don't really know anything about the reputation of the surgeons at MGH for making pouches....

Yes, my wound is improving! Finally! I am still restricted in things that spread the wound out, but I can do a lot of new things now, and I'm starting to get out and about.
Posted 12/27/2011 5:20 PM (GMT 0)
That is who is doing mine I think. I talked to dr. Bleday at brighsms too, but I really liked her. So your stoma and everything is good!i am worried about output, I just posted a prednisone question and out put. Why do you most likely have crohns again? I probably asked you this already. I most likely don't but am always worried. Thanks so much. I heard Kerri was awesom too. I just hope I can hold out till she is available . I am on 15 pred now to try and maintain until then. How much were you on that it caused problems.
Posted 12/27/2011 5:59 PM (GMT 0)
Allswell, where are you? If you give me an email or another way to contact you off the list, I'm happy to talk to you w/more specifics re MGH.

My stoma is great -- she really cares about making a good stoma. And she's been excellent w/the follow up etc.

My inflammation always looked patchy like Crohn's, I had some skin things that biopsied like Crohns, and I responded to flagyl in a flare once..... those were why people thought I had Crohn's..... evidence for UC was no small bowel involvement and my colon didn't show markers for Crohn's in the biopsies after surgery.

I was on 40 mg of pred when I decided on surgery ... had been on pred for about 7 months for that run, couldn't get off of it, and had been on for a fair amount the last few years.... I did a super fast taper down to 20 mg in two weeks for the surgery.

I'll go check your other question now..... hang in. It's scary, but the med people know what they're doing.... and part of what's good about being at a really good hospital is that they have experience w/most anything that might come up if there is a complication....
Posted 12/27/2011 9:31 PM (GMT 0)
Hi Brittany,

I hope you are able to get the help you need!  Myself, I am 27 years old, and I had problems all my life with bloating, gas, and constipation.  Last year, I was was diagnosed with colon inertia because I knew I had more problems than just IBS.  I had my total colectomy back in June, but I am still having problems.  I have excessive gas everyday trying to lay in certain positions to get it out, and I take milk of magnesia.  That is better than taking 7-8 dulcolax with miralax or whatever to go the bathroom!  However, after my surgery in June, the doctors finally did a gastric emptying test on me in August because what started me going to the doctor was this constant pain on my left abdomen (complained since 2009 about true pain on left side), trapped gas, nausea, dry heaving, reflux, which we thought might get better if my colon was out.  I did not have this test done prior to surgery, and we found out why I keep on getting worse because air, liquids, foods do not leave my stomach, gastroparesis.  You can just hear the air in there sometimes!  So, part of my problem now is just contributing to gp.  It takes 8 hours of more for things to leave my stomach.  I can barely eat anything now-a-days!  I am going to see a surgeon this Thursday in Chicago hoping he can help me!  Take care, and keep us posted!

Kyle 

Posted 12/27/2011 10:09 PM (GMT 0)
Hi Brittany.. so sorry to hear of your troubles. I can totally empathise with the misery and pain. I was diagnosed with colonic inertia AFTER I had emergency surgery for a perforated colon (diverticulitis). I had a temporary ileo for a while then they hooked me back together.. at which point nothing worked. I then had 9 months of total misery, bloating, constipation, constant nausea, unable to eat anything.. ugh it was just awful. Can't begin to imagine what that would be like for the length of time you've suffered. Interestingly, like you I also gained weight.. it was like my body just held on to everything and the diet I ate was all processed rubbish as it was the only food I could tolerate.

After 9 months of utter misery I basically begged my surgeon to put my ileostomy bag back as I knew I was much better with it. It didn't really bother me too much and I didn't want another massive surgery (I'd already had 3). I didn't want to risk a J Pouch or total colectomy as I was comfortable with the bag (having already had one!) and knew I could do my running and cycling with it.

I'd say for sure that surgery is your only option and you're likely to find a big improvement afterwards. All I'll say is that don't discount an Ileostomy as an option.. many of us on here live very healthy and happy lives with a bag and it really isn't a big deal once you get used to it. For me it was the best solution and I'm now very healthy, happy and MUCH improved.

I can't comment on your clinic options, as I'm in the UK, but for sure you need it done laprascopically and find a surgeon who is experienced in doing total colectomies or ileostomies for colonic inertia.

Good luck and keep us posted.. hope you get something sorted soon.
Sarah
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