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Help Me...Miserable....want surgery asap.

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Posted 5/19/2014 8:06 PM (GMT 0)
Not sure what i want or need from anyone reading this....

GI doc has talked about removing colon, leaving me w/ an ostomy. Wants to exhaust other options first, such as biofeedback and meds. I have chronic constipation and bowel incontinence due to severe nerve damage. It has been 11 days since my last bm. I generally only have bms with the use of lots of laxatives and either bowel prep or mag citrate. Was told to do mag citrate this weekend.

So, drank the bottle Sun a.m. and nothing has happened. Had to cancel 2 appts today, probably 2 more tomorrow. Been talking to the doc's office back and forth all day. Waiting right now for a call to tell me what to do. Feel horrible. Super bloated, nauseous, pain (better today than yesterday though). No interest in eating obviously, but i have to eat to take some of my meds. Pretty much in tears at this point. I can't do this anymore.

I wish the doc would call and say, Ok, let's schedule surgery. For tomorrow.

This is no way to live! I can't handle this. It's ruining my life! Doc is going to find a solution to get me through the next few days. Have an appt with him on this friday. Really thinking i am going to beg him to give up on the meds and biofeedback and try to push him to agree to surgery asap.

Anyone have opinions about this? good/bad idea to try to hurry up with surgery?
Posted 5/19/2014 8:13 PM (GMT 0)
Sorry I cannot answer to your situation...have you thought about a second opinion? I am a fan of teaching hospitals if there is one near you.
Posted 5/19/2014 8:14 PM (GMT 0)
What does the biofeedback involve? It sounds like you are suffering terribly. 11 days with out a bm?? I'm sorry I don't have any advice as I don't know much about your condition but I cannot blame you for wanting surgery and some relief. If that's what you really want you'll have to be firm with your doctor. After all it's your body and your decision to make. All the best.
Posted 5/19/2014 8:56 PM (GMT 0)
Why do you need the GI for a surgery consultation or appointment? The only thing my GI did for me was recommend that I have surgery and he also recommend a great surgeon for the surgeries. I didn't need my GI for this but it was nice to have his input and support. He even visited me a few times in the hospital after my surgeries just to check on me.

I agree with Equestrian about the University/Teaching Hospitals, that's probably where you want to go for a 2nd opinion or surgery.
Posted 5/19/2014 9:34 PM (GMT 0)
my gi doc is at a teaching hospital. he's really a great guy. i only just started seeing him 1 1/2 months ago. I really value his opinion and because he is working w/ two of my other docs, he got to know me pretty quick. this is the worst i have felt in the time i have been seeing him. i want to know what he thinks, and would feel better if he was in support of the surgery and could recommend a great surgeon. my gi doc had talked to me about how i have a poor quality of iife right now, etc, so i think he will be supportive.

i did talk to the nurse again, she said they decided the bowel prep was ok to do this time, and friday we'd figure out what we should do. apparently, they called the wrong # earlier and someone else got the message i was supposed to get. so someone is out there right now wondering why they got a message telling them to drink a gallon of bowel prep!! lol. good thing i called the doc's office back to check on things.

my first gi doc was an absolute joke. he ended up saying i would need multiple laxatives daily and the prep weekly for the rest of my life. there were other things about him that were really bad. my urologist was able to talk my new gi doc into taking my case. he is also a full professor, so even though he works a billion hours, it's hard to get in. he wasn't taking any new patients when my urologist begged him to help me, and even then i had to wait 2 months for my initial appt.

thanks for the responses. appreciate the support!
Posted 5/21/2014 4:22 AM (GMT 0)
I'm sorry your going through such a crappy time with your doctor. So many docs don't take constipation seriously because they don't know how AWFUL it is to live like we do. It's miserable!!!! I hope your doc takes you more seriously this time.

Best wishes!!!
Posted 5/21/2014 4:35 AM (GMT 0)
After I had motility studies, I went directly to the surgeon of my choice and asked him to do the surgery.
I'm wondering if you could benefit from the same surgery I did: a subtotal colectomy. No stoma because there is seven inches of colon left.
Posted 5/21/2014 10:31 PM (GMT 0)
Thanks for the responses-- I am feeling human again today. Not great, but a lot better. Looking forward to meeting with the doc Friday. I think he will be supportive.

I have a question: so, if I do have my entire colon removed (I am 99% sure that's the route we're going to go, because of the incontinence problem), what happens about taking meds? I am currently on about 15 or so meds for various medical problems, in addition to my GI meds. I heard that meds that are any kind of long acting or extended release types would not work anymore because they wouldn't be in my system long enough to get absorbed. Is that true? What about other meds, like things that have to be taken a few times a day/shorter acting meds? And vitamins?

Thanks for any info you have for me.
Posted 5/21/2014 10:44 PM (GMT 0)
Extended release meds won't work, because they are designed to be released in the colon. But shorter-acting meds should be fine: I never see pills come out the other end, so I presume they are being absorbed.

Incidentally, your entire colon might be removed but your rectum can still be left. If the rectum is not removed, the small bowel can be connected to it. Your surgeon might not want to do that, given your history of incontinence, but it's worth asking about.
Posted 5/22/2014 6:41 PM (GMT 0)
So sorry for your struggles. I'm glad your feeling better in the last couple of days. I know how exhausting this is.

I had constipation all my life, so understand not having a bm for weeks. It's not a life to live.

Removed my entire colon because of an ATypical issue with my colon. During surgery, I was connected from my small to my rectum, but it disconnected and I have a ileostomy, which can be permanent if I wanted. You might be able to have your small connected to your rectum.

Concerned with your nerve damage and how that effects other aspects of your GI tract.

Ask your GI for referrals. Get a few surgical consults.
Posted 5/22/2014 8:57 PM (GMT 0)
Your initial post sounds like the way I felt prior to my surgery. I went to my surgeon and I cried and begged for her help- I was at my wits end and in terrible pain at the time. She said- ok, time for surgery. Later, she told me that she often will push other options than surgery until the patient "begs." Not that she's into suffering, but since the surgery can be so life altering- hopefully for the better, but not always- the patient has to be ready and sure about it. Generally, she said that's when the begging happens and she knows you're ready. I understand this approach...I didn't know I was ready for it until I found myself a teary eyed hot-mess begging for her to rip me apart! That said, she is an amazing CR Surgeon who did nothing but amazing things for me. Of course, she will always have a special place in my heart for saving me from the mess that was my rectal perianal areas!
Posted 5/22/2014 9:52 PM (GMT 0)
I sincerely appreciate all of the responses. I went to biofeedback this morning and the PT told me that she can't say there's no hope of it working, but that the chances of it having a significant impact on my quality of life are slim. She will make sure to talk to the doc or make sure he's gets a message from her before my appt tomorrow, just to let him know the specifics of where things are at and her thoughts on the chance of improvement. She is so nice and really smart. And I love that she is so involved with communication with my GI doc. Makes things a little less stressful.

I am incredibly anxious about the appt with the gi doc tomorrow. I guess because I'm ready to say ok, let's do this life altering surgery. I really just can't go on like this anymore. I just want to feel better and get my life back. Sure, i'm pretty scared about the surgery (i already had a bladder augment and stoma, which really made my anatomy pretty weird) and have concerns about what life will be like afterward (so many things to think about and questions to ask, etc). I want to know i am making the right decision. I want the doctor to tell me it's the best option i have. I really want him to back me up on this one. I have the feeling that he will, but nothing will get rid of this anxiety until i talk to the doc and we agree on a plan of action.

I'm going to spend some time tonight writing down questions and things i want to be sure he knows about where i'm at. Excited and nervous!

I have learned quite a bit about ostomies over the past month or so, but wow, there is so much to think about. I do have a question on my mind right now, maybe you can help: Ok, so weather is getting warm, and as much as i hate to say it, i tend to sweat quite a bit. How will that affect having a bag? Will it be harder to get it to stick to me where i want it to and not stick to my skin other spots? Will it get smelly?

Another question: before you had surgery, what did you consider your best sources of information to be? Docs, surgeon, books/websites, forums like this?

I know i'm just meeting with the doc tomorrow, not a surgeon, but any last minute thoughts on things i need to say or ask him?

Thanks so much for your support! Wish me luck!!
Posted 6/19/2014 5:32 AM (GMT 0)
Oh Sunny, I'm sorry you've gone thru so much pain! I remember those days before surgery, I could barely make it thru a workday...often wound up at the ER in horrible pain. Over the counter laxatives don't work for me and Miralax? Oy...took 3 days/3 doses then severe pain to pass anything! I had a colostomy, so still have most of the large intestine, still constipated (I have nerve damage too). My family Dr put me on Linzess and it thins everything out, so I can get rid of waste, with only a few hours of pain a day.

Good luck & hope they can schedule the surgery sooner. No one should live with that pain and go weeks without passing waste.
Posted 6/19/2014 5:34 AM (GMT 0)
Oh Sunny, I'm sorry you've gone thru so much pain! I remember those days before surgery, I could barely make it thru a workday...often wound up at the ER in horrible pain. Over the counter laxatives don't work for me and Miralax? Oy...took 3 days/3 doses then severe pain to pass anything! I had a colostomy, so still have most of the large intestine, still constipated (I have nerve damage too). My family Dr put me on Linzess and it thins everything out, so I can get rid of waste, with only a few hours of pain a day.

Good luck & hope they can schedule the surgery sooner. No one should live with that pain and go weeks without passing waste.
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