Kathleen's update
I finally talked with Kathleens Dr. in Boston last night. We will be going out there in a couple weeks for one more test and to discuss with him and a surgeon a surgery that he has recommeded. It's called M.A.C.E. Here's a link that explains it.
http://www.giforkids.com/?a=Procedur...costomy%20MACE
Wow. Well, it looks like it may well work but it's worrisome that they stress that all else must tried first (which I know you have done already!!!) But the warnings make you wonder what the risks are. The simple fact is, you and Kathleen cannot continue to live without some intervention and this looks promising. Please let us know how you feel after speaking with the doctor. Good luck my friend, you guys have been through the mill!
Donna, Mum to Natalie (20), ablebodied, kind and beautiful and Nicholas(23), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when Liverpool football club is losing!
Check out my blog: http://www.donnathomson.com
Oh wow! That sounds serious....but it does sound like you've tried everything already...hope the doctor can answer all your questions and give you lots of information before deciding.
Lisa O.
Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)
Well, I would not rush into anything invasive. And how proven is this intervention? Can she manage with the yogurt? Could she manage with occasional enemas of the conventional kind?Originally Posted by andromeda31
Your absolutely right. I certainly need to get all the information. I've read patient reviews that were very positive. Kathleen has not had a good quality of life for well over 2 years now.It's not as invasive as it might sound(althought it IS surgery and I don't take that lightly), it's done laproscopically, it's %100 percent reversible, and most complications have come because of other issues a patient has already. We have cvertainly not made any decisions yet until we have a good long talk with the Dr.s. We've been trying things to help with her motility for 2 years now with stimulants(which always cause her pain) and softners(from Miralax to prescription Amitiza) which seem to make her BM's either too loose(and she still doesn't acutally go on any regular basis no matter how loose) or she doesn't go at all which causes a rebound of diarhea from the constipation. She never really has any control. By about 3 days of not going she feels miserable and by 4-5 days can't make it to school. She misses at elast 2 days a week. She's starting to tell me she's fustrated when she doesn't feel good. She's 15 and accidents at school are emberesing to say the least. As far as enemas... again she's 15 and what fifteen year old would be willing to do that (not to mention thinking ahead to 16,17,18 etc. She eats (and always has eaten) lots of fiber and yogurt with probiotics but since the issue is motility and she's has testing done that shows her intestines just don't contract it really won't help with that. We're getting to the end of the trials of what might work. She also has nerve pain which she takes medication for. The constipation triggers this too. It's really tough trying all the different meds since there are so many things she can't verbalise to me and some of them really scare me. As far as the dr. said Amitiza is the only med he thought would work. I'll keep you posted... Kathleen just came home from school early crying and her belly is huge. It's been really hard on her. She's still a happy energetic girl when she has a good day and I don't want to see that fade away with all this going on. It breaks my heart ot not be able to help her when she's crying and hasn't gone in 8-10 days.
Mary Grace
((((hugs)))) That is nice that it is reversible...I know I would be more receptive to something like that where we weren't stuck with it permanently! Constipation is such a sucky problem. A few yrs ago we had Caitlin regular...went daily every morning, it was so great. Then lots of shunt problems and different seizure meds have completely ruined regularity for her. In fact, she needs a dose of miralax tomorrow as I know it's been a few days...it sucks to have to monitor that...and I'm sure she feels yucky too. Sounds like your 'gut' is saying go for it...
Lisa O.
Last edited by andromeda31; 10-18-2012 at 11:30 AM. Reason: misspelling
((((((Mary & Kathleen))))))
Your two important factors, as you stated, are Kathleen's quality of life and that you've tried every possible alternative to resolve her chronic, debilitating constipation. Both are extremely compelling.
We never want an invasive procedure for our children, but sometimes, it is the best solution, and sometimes, it is the only solution. While I'm not familiar with this particular procedure, it sounds similar to a colostomy, which Jon has. Jon's colostomy was an emergency procedure, during a life saving surgery to remove his twisted gangrenous colon. It is also reversible, but we chose to keep it, because it works for Jon. He can no longer sit on a toilet, so it is actually a tremendous blessing.
Like his G tube, his trache, and his catheter, we were quite nervous about his colostomy, but as with all of the other appliances, we learned quickly how to care for it. And once we were familiar with it, it was no longer scary.
If the MACE frees Kathleen of her constipation miseries, you can certainly consider it a success. No more meds for constipation is another benefit. I'm not sure what the cons are to a MACE, and that's a good question for the doctors.
Perhaps it would be helpful for you to check the internet for any kind of discussion forums about MACE, so you can have real life testimonies to guide you in your decision-making.
Sending healing prayers for sweet Kathleen and guidance for you ~
Love & Light,
Rose
Mom to Jon, 43, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.
Thank you ladies for all your thoughts and concerns. I've read a lot of reviews and they are very positive. I even checked the "complications" and they seem to be very minor, fixable, and usually in patients with another specific issue that interferred with the success of the surgery,but even then usually rectified after a bit of tweaking. To explain it simply it's a opening in the belly(not very noticable) ,and using the apendix as a tube (the procedure is also called an apendacostomy) attached to the intestines you are able to "flush" the intestines of stool. Sometimes daily sometimes every other day. Kind of an "upsidedown" enema. Unlike an enema the patients can do it independantly, and it's certianly not as intrusive or emberassing as a typical enema. Especially for a young 15 year old girl. You sit on the toilet and can do other things like read or whatever. Your not lying down with your but in the air. We will not make any decision until tlaking with the GI Dr. and surgeon but if this is the fix I'll take. I've forgotten what it was like for Kathleen to feel well all the time and not miss school and even do swim therapy and go to her personal trainer, all the things she used to be able to do.
((((((Mary & Kathleen))))))
It sounds like a simple and efficient solution.
The colostomy is similar in that a portion of the intestine is pulled out, creating a rosebud stoma. Of course, this is where the bowels exit (also where we give enemas or glycerin suppositories), so that's a huge difference.
I know that you're both ready for something to work for Kathleen, and if you feel comfortable with this, I'm sure it will be the answer. Go with YOUR gut!
Prayers continuing ~
Love & Light,
Rose
Condition
How has Kathleen been doing? Sometimes conditions improve on their own.
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