pain and pd...... ?

[girliekick]

Im going to tell my pd story, and am hoping to get some feedback for new ideas or even old ones that should be re explored.

I am not diagnosed with any autoimmune disorder, but i do have several markers.

Nov- 2nd av fistula failed. diagnosed w blood clot disorder. place pd cath

 

Dec- first two days of pd training things went well.  Experience normal cramping at end of drain. day three there became an intense, sharp, pinpoint pain at the end of drain. pain is located above pelvis right in center of my body. Begin trying many diff positions, and flow rates. None of witch helped the pain.

 

Jan- had omentecomy, 2lbs removed. slowly start trying to do manual exchanges again. pain still exist at every drain. now occasionally on fill, though less pin point and maybe a 3 instead of a 10.

 

Feb- fill pain to much to handle, go to hospital for hopeful solution. Spent half of Feb in two diff hospitals. Rule out any infection, see infectious disease doc. drink the holly Go-Lightly stuff. pre medicated with ibuprofen and attivan. pre medicate w lidocane patch, and loratab. pre medicate w diludan (mentally couldn't handle), that may have touched the pain a lil. Have laprasocpy done by best surgeon in my area. Move cath from my bowl. was sure this would help. It did not.

 

March- Have IUD removed in a grasping attempt. Nothing. Start doing cycler and using tidal. This helps because I only drain completely two times a day. Always have same drain pain, and now have fill pain after each complete drain. Some times experience pain in new places all still in lower abdomen. Rest of march I Rested. Waking up in pain to stop machine, and reminding myself this is better than my experiences w hemo.

 

April- trying to see pain mgm specialist, and follow up with top surgeon. See my neph doc next week, and pd nurses tomorrow.

 

other info-
Had three cath manipulations, all very painful
was told there were some pockets formed by scare tissue. to the best of my knowledge it is not currently in one.\
was told to wait and see if pain lessened as i healed.
All drain bags were clear, no fibrin, one manual in all this time was bloody.

I dont know what to do. I have thought about alt meds, but Im in the south and my docs dint know any one reputable, but think it may be a good idea. as they know they are scratching their heads and have ran out a good game plan

Top surgeon said he had seen 2 cases similar to mine, but there pain was bc perataneal (sp) had hardened and would not stretch.

After re reading this I started wondering if maybe It could have something to do with the sugar? 

I am working on my transplant workup.
I think that is everything. thanks for reading.

 

anything is appericiated.

[monrein]

I have no advice or suggestions since I've never done PD, but I am thinking of you and hoping that some relief will come your way soon.  Also hoping that PD people from here will chime in with any potential ideas.   

[willieandwinnie]

I have no advice or suggestions since I've never done PD, but I am thinking of you and hoping that some relief will come your way soon.  Also hoping that PD people from here will chime in with any potential ideas.   

What monrein said. 

[paul.karen]

Sadly i have to ditto the above two ladies.
But i hope someone may come along to help you out.  I am sure this is VERY annoying for you.

[rookiegirl]

The first 5 months of PD, I had the same problem with the pain during fill and drain.  As my body got used to the fill, the pain went away.  But, the end drain never did.  It hurts like crazy as you described.  I was only able to tolerate 4 nights on the cycler and told my Doctor to put me on manual exchanges.  I did the manual exchanges twice a day for over a year.  Just as soon as I felt the drain pain, I went ahead and turned off my transfer set and start my flush & fill.  This was the only I can tolerate PD.  They did all kinds of X-ray to determine the position of the cath and nothing really out of the ordinary.  Some people have a better tolerance to the pain, I guess.  I know my hurt like crazy.

Now, that I just recently had a kidney transplant, the catheter is scheduled to be removed next week.

[MandaMe1986]

I can't give any advice but I can give you a really big hug  I am so sorry you are having pain like this. 

[mcmkids]

I am so sorry that you are having such trouble. I know that my husband had a lot of problems with low drain volume alarms and pain, even after having his catheter "unkinked" surgically. He did manual exchanges for a while and now he is back on the cycler. He rarely has alarms, but ALWAYS has pain with drains. We can bypass through the initial drain. Sadly, he just suffers through the others.  I hate to say he is getting used to the pain, but I think that is what is happening. I know how you feel about dilaudid. It is a vey strong narcotic pain med and would moat likely take your pain away, but one of its biggest side effects is constipation! I know you are very frustrated, but try to hang in there!!

[girliekick]

Thank you all for you support. I am really happy to have found this site.

mcm if you guys haven't tried doing Tidal on the machine, ask your doc or head pd nurse. I too bypass the initial drain, and rarely have to experience the pain until the last drain. We do adjust, but one of my fears is that having a chronic pain over a long period of time will just create new problems. Does you HB have any minor pain during the day? I forgot to mention that.

Its nice to know others have been or are in the same boat, thought I wish we could all just go for a swim instead.

From one girl to another, Congratulations on the transplant.

To all 

Girl

[george40]

Hi there, well I had to stop using the cycler because for some reason I stopped draining when I lay down. However I recently saw the surgeon and placement looks fine. The suggestion he made though was to change the 'pigtail" catheter with a "straight" catheter. He feels this change would eliminate some of the drain pain and help draining overall. Manuals are working fine, so I am not going to have the surgery unless absolutely necessary. I hope everything works out well for you. Hang in there!

[peleroja]

I feel so badly, because in my 5 years on PD I never experienced pain or problems draining (except when there was a ton of fibrin).  The most I ever felt was a kind of gentle aching at the end of a drain (on manual), and that was only occasionally.  Sadly, PD isn't for everyone.  I sincerely hope you can work everything out.  I love PD.

[george40]

I feel so badly, because in my 5 years on PD I never experienced pain or problems draining (except when there was a ton of fibrin).  The most I ever felt was a kind of gentle aching at the end of a drain (on manual), and that was only occasionally.  Sadly, PD isn't for everyone.  I sincerely hope you can work everything out.  I love PD.

I love PD too, even though I am doing manuals now. I don't think that PD is the problem, I think its more of getting the catheter placed good. PD is wonderful though! 

[KT0930]

Girlie,

I did PD for just over a year and had the same problem with pain on filling. To me, the pain was probably about a 3-4, but I'm told often that I have a pretty high pain tolerance. I don't think my docs were quite as thorough as your's, but we did x-rays, an ultrasound, and even had the GYN check me for endometriosis, even though I had never had any symptoms before that. Everything turned up clear. Cath was placed right, no endo, no scarring that could be seen. We never found the culprit, but since the PD allowed me to work full-time and have a less restrictive diet and lifestyle (I have a son who was 8-9 while I was on dialysis), I chose to stick with it rather than go with hemo.

Have your docs had you check with an OB/GYN to make there's nothing wrong there? Just a thought. BTW, no one ever mentioned the possibility that my peritineum might not be stretching, and with four or five surgeries under my belt, that would be possible! Anyway, I hope all possibilities are being looked into and you can stick with PD.