Re: [QUAD-L] Bowel Problems / Syrinx
Greg... so do you now have both a catheter AND a colostomy? I know of 2 members on the quad list who have had that procedure done whereby I THINK it is called an ileostomy whereby a part of the bowel is taken to urinate through. But they both said that it took a LONG LONG time to recover from that surgery. Over the last 2 to 3 weeks I have been having a terrible terrible time (like never before in my life), whereby my catheter is almost always leaking urine around it. This did not happen over a period of time (months, etc.) . Otherwise I would buy into the "As you get older... things change" This just began in April and actually was originally gotten worse by the first nurse who came to my home from a home health agency waltzing in and not even saying hello and inflating the bulb in my urethra stretching my urethra. Ironically, it was OK for three weeks after that and the next catheter change was done by a great nurse. But that is when it truly began. But what is going on now (and started a little over two weeks ago) is simply unacceptable. And of course detrimental to skin breakdown, by sitting in wetness during the day. Prior to just a couple weeks ago I was not having bladder pain. Or this 24-hour wetness. Of all times for my urologist (who knows my body best and has since 2006) be be on vacation, as well as her regular nurse. I have had a specimen taken about 4 weeks now as I write this but incompetence out there running rampant... I kept calling for the results from my urologist office and my home health agency that took it to the lab and they both kept saying that they could not get the results... this went on and on every week I would call with everyone saying "haven't gotten no results yet." I finally absolutely I asked a nurse who came out to change my catheter (who was a breath of fresh air compared to the nurse I was assigned to when I signed up with this agency and wanted to discharge me. Earlier this week... for no reason except she felt threatened by me. When I didn't do anything to her.) LONG LONG STORY. The home health agency finally got the results by this nice nurse calling the lab when she was here and getting them right away. After that, they said they sent the results of while ago to my urologist's office but my urologist office staff kept saying that they still had not gotten the results. They were throwing the blame back and forth and back and forth and back and forth as to who was getting the results OR NOT GETTING THE RESULTS. It was insanity! So, back when that urine specimen was taken I was not having the current problems that I am now or the bladder pain. My urologist Dr. on call (another urologist in her office) was very cold to me and just told me that I had to wait until my doctor got back into town. In the meantime I have had to pop ibuprofen every day to her three times a day and that is not good and I have never ever had to do that before. Something is wrong and they need to have my urologist call me directly because she has no idea. All this is going on with me. Her current "medical assistant" is just a laissez-faire attitude and says she is going to give all the messages to my doctor. But she said that before my doctor even when on vacation. I feel like in the middle of a Stephen King novel of the darkest kind, and this can't possibly be happening! Even when I have had UTIs over the last 36+ years... I have never had leaking around my catheter. Further, I am building a sediment like no tomorrow and can barely make it a week without needing my catheter changed because they get so clogged near the tip of the catheter bulb. My urologist also does not know that either. My urologist has removed bladder stones twice in my 10 year history with her. Once in 2006 when I had a bunch of big ones. But no leaking and only having fevers to be finally checked for a type of UTI, which I had. The last time she removed the bladder stones from me (10 of them) was soon after my husband passed away. And they were removed in August of 2012. Although my husband was still alive to take me to get pelvic CT scan showing the stones and planned on going with me again to have them removed by neither he or I had ANY idea he was going to die) and my bladder was in perfect shape then. Soon after moving back to Tucson Arizona. I had another pelvic CT scan so *she* could get an updated view of my kidneys, ureter and bladder even though I had just had one in September of 2015. She only found two tiny bladder stones, and she said it could even be one bladder stone, which was very little for me compared to my past and, at that time in March or early April of this year... none of this was going on. Further, the last two times she had been in my bladder. She told me that my bladder "looked like a bladder that never had a catheter in it." Despite me having a Foley catheters since October 1979. So everything was cool until just recently and after that nurse stretched my urethra originally. This is dr
RE: [QUAD-L] Bowel Problems / Syrinx
I am s leaning that way and your response just helps me lean that way a little more. Did you rule out other issues such as gall bladder, pancreas before you took the leap? Nicki From: greg [mailto:g...@eskimo.com] Sent: Thursday, May 12, 2016 5:18 PM To: nichole rohling Subject: Re: [QUAD-L] Bowel Problems / Syrinx I was having lots of issues, some of that, some leakage, etc. I decided just to bag the whole idea So To Speak. Colostomy. My only complant is that I didn't do it 45 years ago. So much nicer, faster, less stress, less embarassing, Greg > I was having issues last fall with having to call my caregiver to > come and get me on my shower chair about 2 hrs after I would get in > bed. I would have diarrhea or very loose stools. > > Dr. started me on a probiotic and it did help. Only had to call > caregiver once from November to last Thursday. I had to call > Thursday night, Sat, Sun and last night (I took lomotil Monday and > didn't have to call Mon or Tues) > > I called Craig's nurse hotline and she gave me several > possibilities as to what we need to check. > > Syrinx was 1 of them ad I have been having a very odd excruciating > pain in my shoulder joints. > > Anyone with a syrinx experience bowel issues? Or anyone experience > bowel issues like I am. > > We'll be checking a number of other things too but just asking for > others' thoughts, experiences. > > > Nicki
RE: [QUAD-L] Bowel Problems / Syrinx
Thanks Lori! I assume I’ll be doing a lot of testing! Nicki From: Lori Michaelson [mailto:lorilivin...@gmail.com] Sent: Thursday, May 12, 2016 1:44 PM To: nichole rohling Subject: Re: [QUAD-L] Bowel Problems / Syrinx Hi Nicki, It took me 4 1/2 years to get diagnosed with syringomyelia and a lengthy syrinx between 1989 and 1994. My symptoms were so misleading. I thought I had some sort of an abdominal issue because my primary symptoms were severe abdominal discomfort and pain as well as a huge increase in spasticity. I had every test done possible thinking I had to be something to do with my abdomen (but I was not having any irregular bowel problems). I had x-rays, CT scans, sonograms, etc. of my abdomen and colon. I even had an upper and lower G.I. series and EVERYTHING was negative. It was not until my ex common-law husband lifted me into his truck in the passenger seat and we drove up to my sister's house. I sat in the passenger seat and my sister came out to see me because I did not bring my wheelchair. She asked me if I felt okay and I said yes and "why?" She said "Because you're right pupil is dilated." This was approximately 1993/April 1994 or so and I had had it. I KNEW SOMETHING WAS WRONG. It made going to work terrible. I was in pain all the time and my spasticity was out of control. That is when I called Greg hospital and a neurosurgeon told me to have an MRI [after I told him about my pupil dilation that stayed fixed for an entire week] to check for syringomyelia. Back then I had NEVER heard of syringomyelia and I was scared to death. I had a shot live-in and it failed and I almost died for two weeks in Brooklyn New York. I chose the wrong neurosurgeon but did not know it at the time. After that one failed I had a syringo-plural shunt put in and I had it there ever since. I had many follow-up MRIs and they have all said that shunt is still working but I have not had an MRI done since 1998/1999. Since I almost died I am not letting anybody touch my spine again unless I am on my deathbed. Bottom line - my syrinx never caused any problems with my bowels. BUT it caused all kinds of abdominal pain and discomfort. I even thought it was/might be bladder stones and I had a bunch of tiny ones removed but that was not the problem. For me, syringomyelia is more disabling then quadriplegia by far. I did not begin to have pain in the area where my shunt is until 2 years later but it is caused by the muscle/nerve area that the shunt is woven through. The pain medication I am on keeps the pain at bay unless I get hurt by getting moved wrong by a caregiver or overuse that particular muscle. That's my story. For you I would suggest thinking back over everything that has occurred over the last numerous months and by process of elimination... something might occur to you. Otherwise... I would also suggest having your stool checked for bacteria also. ~Lori C4/5 complete quad, 36 1/2 years post On Thu, May 12, 2016 at 11:13 AM, nichole rohling wrote: I was having issues last fall with having to call my caregiver to come and get me on my shower chair about 2 hrs after I would get in bed. I would have diarrhea or very loose stools. Dr. started me on a probiotic and it did help. Only had to call caregiver once from November to last Thursday. I had to call Thursday night, Sat, Sun and last night (I took lomotil Monday and didn’t have to call Mon or Tues) I called Craig’s nurse hotline and she gave me several possibilities as to what we need to check. Syrinx was 1 of them ad I have been having a very odd excruciating pain in my shoulder joints. Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues like I am. We’ll be checking a number of other things too but just asking for others’ thoughts, experiences. Nicki -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
RE: [QUAD-L] Bowel Problems / Syrinx
Yes. Waiting for my doctor to return my call so we can start testing and ruling things out. Nicki From: wheelch...@aol.com [mailto:wheelch...@aol.com] Sent: Thursday, May 12, 2016 12:56 PM To: zoocr...@windstream.net; quad-list@eskimo.com Subject: Re: [QUAD-L] Bowel Problems / Syrinx Have you considered having a sample of your stool tested for high bacteria? Best Wishes In a message dated 5/12/2016 12:14:58 P.M. Central Daylight Time, zoocr...@windstream.net writes: I was having issues last fall with having to call my caregiver to come and get me on my shower chair about 2 hrs after I would get in bed. I would have diarrhea or very loose stools. Dr. started me on a probiotic and it did help. Only had to call caregiver once from November to last Thursday. I had to call Thursday night, Sat, Sun and last night (I took lomotil Monday and didn’t have to call Mon or Tues) I called Craig’s nurse hotline and she gave me several possibilities as to what we need to check. Syrinx was 1 of them ad I have been having a very odd excruciating pain in my shoulder joints. Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues like I am. We’ll be checking a number of other things too but just asking for others’ thoughts, experiences. Nicki
Re: [QUAD-L] Bowel Problems / Syrinx
Have you considered having a sample of your stool tested for high bacteria? Best Wishes In a message dated 5/12/2016 12:14:58 P.M. Central Daylight Time, zoocr...@windstream.net writes: I was having issues last fall with having to call my caregiver to come and get me on my shower chair about 2 hrs after I would get in bed. I would have diarrhea or very loose stools. Dr. started me on a probiotic and it did help. Only had to call caregiver once from November to last Thursday. I had to call Thursday night, Sat, Sun and last night (I took lomotil Monday and didn’t have to call Mon or Tues) I called Craig’s nurse hotline and she gave me several possibilities as to what we need to check. Syrinx was 1 of them ad I have been having a very odd excruciating pain in my shoulder joints. Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues like I am. We’ll be checking a number of other things too but just asking for others’ thoughts, experiences. Nicki
Re: [QUAD-L] Bowel Problems / Syrinx
Ive never heard of a post traumatic syrinx causing bowell issues with a quad. Syrinxes are very complicated in their symptoms though. If you read about it, ore than likely it will confuse you. Ron On Thursday, May 12, 2016 12:15 PM, nichole rohling wrote: I was having issues last fall with having to call my caregiver to come and get me on my shower chair about 2 hrs after I would get in bed. I would have diarrhea or very loose stools.Dr. started me on a probiotic and it did help. Only had to call caregiver once from November to last Thursday. I had to call Thursday night, Sat, Sun and last night (I took lomotil Monday and didn’t have to call Mon or Tues)I called Craig’s nurse hotline and she gave me several possibilities as to what we need to check.Syrinx was 1 of them ad I have been having a very odd excruciating pain in my shoulder joints.Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues like I am.We’ll be checking a number of other things too but just asking for others’ thoughts, experiences. Nicki
[QUAD-L] Bowel Problems / Syrinx
I was having issues last fall with having to call my caregiver to come and get me on my shower chair about 2 hrs after I would get in bed. I would have diarrhea or very loose stools. Dr. started me on a probiotic and it did help. Only had to call caregiver once from November to last Thursday. I had to call Thursday night, Sat, Sun and last night (I took lomotil Monday and didn't have to call Mon or Tues) I called Craig's nurse hotline and she gave me several possibilities as to what we need to check. Syrinx was 1 of them ad I have been having a very odd excruciating pain in my shoulder joints. Anyone with a syrinx experience bowel issues? Or anyone experience bowel issues like I am. We'll be checking a number of other things too but just asking for others' thoughts, experiences. Nicki
