My wife has been having pain, sometimes severe, during fill and also near the end of the drain. The pain is so bad at times that we have to interrupt the process until the pain subsides. She is using the cycler. She now has a low grade fever. She also had one the last time she went to her unit. She had a colonoscopy in February. We are wondering if she could have an infection from the colonoscopy that is causing both the fever and the cramping. Her Dr. and her unit have no answers. The nurse at the unit can’t understand why she is having so much pain. In the last 2 months she has had pain every night except for about 5 or 6 nights total. She doesn’t think that she has been “right” since the colonoscopy. Her last 24 hr urine scan had all the proper levels.Do you have any thoughts on this?
You should definitely talk with your wife’s doctor. Your doctor knows your wife’s history better than anyone. Some things you’d want to tell the doctor or nurse include where the pain is (is it always in the same place?), how severe is it on a 0 (none) to 10 (excruciating) scale.
IMPORTANT: Be sure to notify the doctor and nurse about her low grade fever. Fever isn’t common on PD without infection. Ask to have the drain bag checked to be sure everything is OK and that she doesn’t have peritonitis.
If she doesn’t have peritonitis, other possibilities for the cause of your wife’s abdominal pain include:
Your wife may not be used to peritoneal dialysis and the catheter could be rubbing on the wall of the peritoneum.
Ask her doctor or nurse if they can do testing to be sure the catheter is the correct length and in the right place. This would require an x-ray (KUB and lateral).
The volume of fluid could be more than she can tolerate too soon.
Ask the nurse if she can try less volume exchanges for now building up to the usual amount and still get enough dialysis.
The machine could be trying to drain fluid that’s not there.
Patients report that changing position (leaning into the pain) often moves fluid to the area so the machine can remove it. Some patients say they have talked their nurse into letting them leave a small amount of fluid in (called “tidal”) all the time. Some nurses worry about getting enough dialysis, but leaving a little fluid shouldn’t affect that.
The temperature of the solution going in could be too cold or too hot.
Check the temperature setting on the machine and be sure that the setting is accurate. Ask the nurse how you can tell this.
The type of solution could be causing a reaction.
Ask the nurse if he/she or any colleagues have had problems with others using this type of solution.
She could have another abdominal problem not related to PD, such as diverticulitis or diverticulosis.
Ask the doctor or nurse to review the results of the colonoscopy to see if there were any polyps or diverticuli found.
Finally, you might want to ask your wife’s nurse to call the cycler company to talk to the nurse there about your wife’s symptoms. That nurse has a wealth of experience with PD, their machine, and the solutions and wants your wife to have a positive experience with PD. He/she may think of something your nurse hasn’t considered. If your wife’s nurse won’t call, call yourself.
She does have some diverticulitus that they found in the colonoscopy. She took some Prevacid for that. She had stomach problems from the test from February to August when she took the medicine. We have discovered that if she is stressed (upset) at all that she will have the cramping. If everything is going along smoothly, then she has no problems. But she is easy to stress out. The cramping can be to such a level that we have to stop the machine to allow her to relax, and then restart it after a few minutes. The Dr. and the unit know about these problems but the Dr. says to talk to the nurse and the nurse says that she doesn’t understand why she is having so many problems, that no one else seems to have problems like she does. I will try and check with the company and see what they can tell us. It does sound like tidal might be a solution for part of her problem. The Dr. saw her last week and says that her sinuses are infected and she has a chest cold. He wants to see her again shortly if her temp doesn’t go down. She has a history of tender insides that runs in the family. Most meds are hard on her insides. PD is working great as far as keeping ALL her levels in the proper area.
If the colonoscopy showed your wife had diverticulitis, hopefully someone has talked with her about foods she should limit. If not, check with her GI doctor or the clinic dietitian. If foods get caught in the pouches (diverticuli) in the intestine. this can cause irritation and pain.
If your wife has more cramping when she is under stress, it would be a good idea to look more closely at her stress. Every dialysis clinic has a social worker who has a masters degree and clinical training to counsel patients about issues related to coping, including stress. I’d recommend that your wife make an appointment to meet with the social worker. If you live too far away to meet with the social worker in person, perhaps your wife could set up a time to talk with the social worker on the phone. Social workers are available to home patients as well as in-center ones. If your wife would prefer to meet with another counselor, the social worker may be able to suggest some community counselors. Some things the social worker or other counselor will probably do include helping your wife identify what seems to make her stress worse (events, thoughts, or other) and what seems to make it less (activities, thoughts, other). There are techniques your wife could learn to help her manage stress better. Even doing deep breathing exercises and listening to relaxation tapes or even gentle music when stress normally occurs before it starts can help people relax and either avoid or cope with stress. Since your wife has no pain when she has no stress, hopefully learning to manage stress will reduce or eliminate her pain and keep her from having to delay her dialysis inflows because of pain.