Hi Auny Netty, I'm so very sorry to hear about what you've been through. It's heartbreaking--the difficult recovery and the lack of support at home. I don't have much advice, but I'll throw out a few thoughts:
(1) I do think it would be helpful to get a pain doctor. I know it is incredibly difficult. (I just went through this myself, because my pain doctor is leaving the state. In two cities (one, a very big city), I found only *one* doctor still prescribing pain meds. Doctors at all the major hospitals and clinics are no longer prescribing pain medication to outpatients.). So, I think I would google and make phone calls. You may need a referral from your family doctor, so if you find one, you can give the family doctor the info. If you can't find one who prescribes pain medication, I would go to one who does not, because they can prescribe other meds (e.g., amitriptyline) that can be helpful.
(2) I agree that laxatives and stool softener are important. I still take 5 stool softeners and two laxatives every day.
(3) I think contacting Dr. Ashley Gubbels in Rochester, NY, is a good idea. I just googled the distance from where I think you are, though, and it is 4 hours, so that would be a big drive. But that is something to consider when you are more mobile and maybe after you see Hibner in June.
(4) I'm with Violet on the ice and heat routine. I couldn't function without ice and heat (I still need both). Do you have a plastic heating pad? Those are really great.
(5) Can your family doctor give you a referral for a colorectal surgeon?
April
My recent evaluation with Dr. Hibner
Re: My recent evaluation with Dr. Hibner
Thank you for your concern and suggestions, i have nothing left to give. Sorry. I do have an appointment with my family doctor on Monday. You know a follow up from the two emergency rooms he suggested i go to with no help but hefty bills. Lucky for you guys, I do not know how to download pics from my phone or i would attach them. Five days after my treatment my rectal prolapse was a bloody horrid sight, just guts and veins hanging out. They want me to consult with Gastro doctor who will want to get me in for another colonoscopy endoscopy, as he does not do that surgery and then send me to his buddy who is a general surgeon. I am not doing well, and i know this is a sight for hope, so please don't let me discourage people. I now have same pain, severe pain in my left pubic bone area, and very painful rectal prolapse they just shoved back in for now. My rectum looks like a crime seen and emergency rooms told me they are not pain management and they cannot help me. The second answer is no, I have been unable to find any pain management who accepts pelvic pain patients. I feel like i live in a third world country. I do appreciate your concern, and thank you for your kind words and advise.
Re: My recent evaluation with Dr. Hibner
April,
So you take a lot of laxatives and stool softeners too. Sorry to be so personal, but are you wearing diapers too? I am having a hard time balancing all of this in my mind. i was never warned any of this could happen to me. And i tried to interject questions regarding this several times that were unanswered and told to just cancel and go home if i have questions. i didn't want to stay the way i was so i agreed from desperation and hope. I guess we all get what we get, must learn to live with it somehow. I'm just working on wobbling around my house. Can't believe i am even going to doctor appointment. Just more money. he has never even looked at me from the waist down....ever...for years. He cannot help me find pain management. He told me your getting injections, you wont need pain management. If i would have known i would end up worse, i would have stayed like i was. I'm completely clueless and dont have energy or strength anymore, never felt this bad. Sorry. I'm not looking for pity. I will just shut up. I agreed to it blindly, and will never graduate from school of hard knocks. Sorry for my negativity. I am done. Best wishes to all of you from my heart. No one should suffer like this....it is inhumane.
So you take a lot of laxatives and stool softeners too. Sorry to be so personal, but are you wearing diapers too? I am having a hard time balancing all of this in my mind. i was never warned any of this could happen to me. And i tried to interject questions regarding this several times that were unanswered and told to just cancel and go home if i have questions. i didn't want to stay the way i was so i agreed from desperation and hope. I guess we all get what we get, must learn to live with it somehow. I'm just working on wobbling around my house. Can't believe i am even going to doctor appointment. Just more money. he has never even looked at me from the waist down....ever...for years. He cannot help me find pain management. He told me your getting injections, you wont need pain management. If i would have known i would end up worse, i would have stayed like i was. I'm completely clueless and dont have energy or strength anymore, never felt this bad. Sorry. I'm not looking for pity. I will just shut up. I agreed to it blindly, and will never graduate from school of hard knocks. Sorry for my negativity. I am done. Best wishes to all of you from my heart. No one should suffer like this....it is inhumane.
Re: My recent evaluation with Dr. Hibner
Hi Aunt Netty,
I do take a lot, because some of the medication I'm still on creates constipation. I do not need to use diapers. These were prescribed to me (the stool softeners and laxatives), but I figured out the amount that works best. And I have tinkered with the dosing as my medications change. Both of these are available over-the-counter. I use Senna-S (the laxative) and docqlace capsules (stool softener). I get the stool softener through my pharmacy (even though my insurance doesn't pay for it), because the pharmacy prices are *much* cheaper than the regular prices. If you are using diapers, then you could tinker a bit with the dosing. It took me a while to get it right.
I'm so sorry about all the problems you've had finding a doctor and getting good aftercare. I wonder if you could just see a local urogynecologist. I think they are all surgeons, so they would understand the surgery you had (bring all your paperwork with you). And they could advise you on the laxatives and stool softeners, and they could give you a referral to a colorectal surgeon. I would also order your surgical records. I did that and found it all very interesting and useful. Just call Hibner's number, and select the option for ordering your records. From that line you can get info on how to do it.
April
I do take a lot, because some of the medication I'm still on creates constipation. I do not need to use diapers. These were prescribed to me (the stool softeners and laxatives), but I figured out the amount that works best. And I have tinkered with the dosing as my medications change. Both of these are available over-the-counter. I use Senna-S (the laxative) and docqlace capsules (stool softener). I get the stool softener through my pharmacy (even though my insurance doesn't pay for it), because the pharmacy prices are *much* cheaper than the regular prices. If you are using diapers, then you could tinker a bit with the dosing. It took me a while to get it right.
I'm so sorry about all the problems you've had finding a doctor and getting good aftercare. I wonder if you could just see a local urogynecologist. I think they are all surgeons, so they would understand the surgery you had (bring all your paperwork with you). And they could advise you on the laxatives and stool softeners, and they could give you a referral to a colorectal surgeon. I would also order your surgical records. I did that and found it all very interesting and useful. Just call Hibner's number, and select the option for ordering your records. From that line you can get info on how to do it.
April
Re: My recent evaluation with Dr. Hibner
April,
Hi. I am trying to adjust colace, senna, and milk of magnesia dosage...but it depends on what i eat too. Not an exact science. Can't wait for botox to wear off...as i am having accidents urinary and fecal...sucks. No warning. It's been 3 weeks now. Thank you for sharing such personal information. I think i've shared too much on here and may discouraged people from getting help. I sure hope not. I wish i knew how to delete things i posted while ranting out of frustration. My family doc reminded me that I said "I have to try, I can't take it anymore". I did say that so he is correct. Each person's situation is different, but I was so hopeful. Best Wishes
Hi. I am trying to adjust colace, senna, and milk of magnesia dosage...but it depends on what i eat too. Not an exact science. Can't wait for botox to wear off...as i am having accidents urinary and fecal...sucks. No warning. It's been 3 weeks now. Thank you for sharing such personal information. I think i've shared too much on here and may discouraged people from getting help. I sure hope not. I wish i knew how to delete things i posted while ranting out of frustration. My family doc reminded me that I said "I have to try, I can't take it anymore". I did say that so he is correct. Each person's situation is different, but I was so hopeful. Best Wishes
Re: My recent evaluation with Dr. Hibner
I'm so sorry about the botox creating those problems. You could call Hibner's office to see if they have suggestions. But, yes, tinkering with the dose of the colace, etc. is a good idea.
April
April