AnonymousAugust 6, 2008 at 10:20 am
I am not doing well with CIDP, and am one of those minor few where the normal protocols for treatment are failing me. Two summers ago, two doctors on my team of six told me that I had about two years left of life, so anything after this summer is on borrowed time.
My current treatment is monthly chemotherapy for an all-day treatment at the local hospital, at highest possible dose. My neuro told me he has in the back of his mind, of possibly doing a bone marrow transplant, if all else fails. I haven’t seen anything written up on that being used to fight this awful disease, but perhaps he might have something there… I am getting weaker and weaker. I can only eat about 3 meals per week now, since it attacked my swallowing/digestion process, and have dysphagia and gastroparesis and esophageal dysmotility. I try to drink ensure when possible, but many times not able to.
But on to this problem. CIDP attacked my autonomic system, and has been knocking off the nerves controlling the different organs. I have had a neurogenic bladder now for about 9 months, (was proven by some tests by a urologist, that reminded me of Gothic torture
). At first, the urologist wanted me to do straight caths. about 3 times daily. When infections were still happening, he told me to increase it every 4 hours. Then it finally became necessary to have a regular foley cather, which I have now had for over 6 months.
They first started with a 14 French. I had much leakage. Next they went to a 16 French, still with leakage. I now have an 18 French. And am still having leakage problems. What do I ask for next–a firehose?
Besides still having Urinary Tract Infections, (UTI), the leakage causes an infection on the outside, with pus and a large reddened area, (luckily, I haven’t been able to feel anything down there for about a year, as it looks like it is very painful). I have to treat the outside infection with either Triple Antibiotic Ointment or Lotrimin and a bandage. But the leakage causes the bandage the become absorbed with urine, which fights the treatment. For the UTI’s, I usually end up on an antibiotic every other month. When I go for my monthly chemo at the hospital, one of the doctor’s orders is that they change out my old catheter, and put in a new one.
Does anyone else here have a catheter, and have run into the same problems I have? How can I try to stop the leakage? Are there different kinds of catheters? I need some input/help on this. They told me to expect the UTI’s since my immune system is low now, and it happens alot with catheters, of which they will just keep trying to fight those with antibiotics. They told me it will eventually infect the kidneys. But right now, I just want to try to stop the leakage. Any suggestions?
AnonymousAugust 6, 2008 at 11:05 am
There’s a dad who posted on the CIDP Children’s board. His daughter had a bone marrow transplant for her CIDP. I think she’s doing better now.
I Googled “bone marrow transplant for CIDP” and some links did show up. Here is the link to that search:
I’m not sure about your leaking issue but I’m wondering if you might be allergic to the catheter itself. My MIL is allergic to the latex in catheters & experienced UTI symptoms because of it. I just thought it might be something to look into.
I’m very sorry to hear that you are not doing well. Hopefully the dr’s will find something that works very soon.
AnonymousAugust 6, 2008 at 11:22 am
I was just going to post a question for myself and saw this. Is your foley catheter down below or do you have a suprapubic catheter? That one is inserted just above your pubic area? I know some of my patients who kept climbing up the “fire hose” as you say or had frequent infections did a lot better with a suprapubic cath. There may be less chance of infection this way. You may just be prone because of your weakened immune system too. Good luck to you, I have autonomic involvement and it is no fun whatsover….Gabrielle
AnonymousAugust 6, 2008 at 12:23 pm
Gee, I am sorry you are having so many problems. I thought about a suprapubic catheter also. I’m surprised they haven’t mentioned it. It would be put in under outpatient surgery with minimal sedation. They are easier to deal with than a Foley. They are more comfortable and with less risk of infection, although there would still be a risk. A nurse would come out every month or so to change the cath if need be.
I have actually had one for a month or so, after my hyst and bladder repair. You hook it up to a leg bag or regular bag. One advantage for me was not having to get up in the middle of the night for a BR break! Not funny, really, but a convenience anyway. ( A little humorous note here: my maiden name is Foley. Not a good name for an RN!)
As far as a bone marrow transplant, I would have no knowledge of that for CIDP. It would certainly be cutting edge.
AnonymousAugust 6, 2008 at 5:15 pm
Hi Ken, Sorry to hear you are having more problems, you really don’t need anymore. I’m curious to know if you were tested for anti-MuSK antibodies? as far as the cath is concerned, this may sound stupid but is the balloon being filled properly? if its not, then there lies the problem, if its not filled properly it leaks. I’m also curious, have you tried cyclophosphamide for a treatment?
I sure hope you can get some relief soon. That problem with the caths really can cause alot more problems. You are in My Thoughts and Prayers! Take Care!
AnonymousAugust 7, 2008 at 12:34 am
Having raised a 27 year old son with spina bifida, I should really know much more about incontinence than I do. I do remember the tests you are referring to, they were not fun for him at all. My son began CIC (clean intemittent catheterization) at age 6 & has done pretty well with it through the years. I know he uses a 14 French catheter, latex free, as I do still order his catheters for him. He also used K-Y jelly for the ease of insertion, & wears an adult Depends for back-up at night. When he was young he seemed to always have a urine infection, so he has just stayed on sulfatrim all these years (an antibiotic for urology.) No infections since then. Wish I could be of more help in this area…
I am so sorry you are having all of these problems. I was given roughly the same time frame back in the spring of 2002, when IVIG, PE & solumedrol were not quite holding me (as a quad.) It was 9 months of cytoxan infusions that finally arrested the CIDP, & after two years I got back to walking but do take a cane with me outside the home. I just wish the same for you… BTW it took me quite a few months before the CIDP was arrested, maybe 9 months or so. I could actually tell when I wasn’t being attacked anymore, even though I couldn’t walk or use my hands for much of anything.
AnonymousAugust 7, 2008 at 12:51 am
I am so sorry to see you suffering like this and hope that some day soon the medications do a turn around for you and make you better. Not fun being sick, but when suffering comes along with it to the point of getting this way, I truely feel for you.
I will keep you on my prayer list and hope that this disease goes away for you. I get constant UTI’s but no cath just yet. Just get the nasty UTI’s and they alone can make you feel bad.
But I know when I get those caths, I alway’s end up with Cistitis. That too is no fun having either. I wish you my best and hope to see you getting well soon.
AnonymousAugust 7, 2008 at 5:09 am
I am so sorry that you have been so unwell with CIDP. I’ve had it for several years now, my last bad attack was about 5 years ago. I still have gastroparesis, gastric reflux and chewing difficulty (among other things!) and I can remember at times (after the attack) – just having a biscuit/cookie soaked in my cup of tea was about all I could handle. I went down to 43 kilos.
After that attack I had problems with my bladder mainly lack of initiating the flow and then the flow would stop and start. But, (touch wood) it has improved since then and is not that much of a problem any more. My gastroparisis and reflux still drive me crazy though.
I’m sorry I can’t be of any help with advice regarding a catheter but I do hope you can find answers very soon.
AnonymousAugust 7, 2008 at 9:21 am
I did a google on suprapubic catheters and read up on them. It sounds like that might be the answer. Since I did not like the urologist I went to, (he was stuck on himself, had a big head, and bad attitude), I will bring this up to my GP and see what he says.
Pam-thanks on the reply. I am going through EXACTLY what you went through. Have now been on the cytoxan infusions for about a year now. Though, I cannot see any improvement yet. This is a very tough summer.
Last month, my white blood count dipped to 2.2 and I got the shingles because my body cannot fight anything off.
The heat of the summer is bringing on GREAT fatigue. Luckily, being in San Diego County, the humidity is low, though when the occasional monsoonal moisture comes up from Mexico, it makes it worse for me. I can make it to about 1pm, then have to go to bed and sleep. I have started changing my days around so that I get up around 3am where it is the coolest part of the day. And with me being weakened from only eating about 3 meals per week, only agravates the situation. Last year, one of my doctors told me to expect a feeding tube in my future, and I am afraid that time is coming near.
I think I will wait and lose some weight, (I can lose about 20 pounds before the caution flag goes up…). I hate living in air conditioning, but some days I get so weak, I have to turn it on in my bedroom.
The hottest month here is September, so I will see how it goes.
Good luck to the rest of you, who live in high humidity areas.
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