Need some cheering up et.c.
#298539 - 01/31/07 06:45 AM
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Ulrika
Reged: 08/20/06
Posts: 581
Loc: Uppsala, Sweden
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After a fall of IBS ups and downs my IBS has been really stable and nice since mid December and it still is. Yesterday though I had to start taking iron pills since I had an iron deficiency. Now I am sort of scared that the iron might mess up the balance I have reached. I am trying to stay calm though.
I am also going through a series of tests at the moment to see what can be done about my sphincter problem. (I had a paralysis condition as a child and it has left me with a partially paralyzed leg and a nerve damaged weakened pelvic floor, bladder retention and oh, loss of sphincter control.) It was pretty ok before the IBS got bad as an accident back then didn't matter much as my stool was always nice and firm. But with IBS-D it's really not a good combo... I am hoping to be a good candidate for Interstim therapy where they put a pacemaker in to control the sphincter for you. But I have no idea what will happen. I'm really scared they'll just send me to do some pelvic floor exercises and then consider me treated. If it weren't for the possible side effects like hernia and skin problems I'd be prepared to do a colostomy to at least be rid of the accident risk...
To make things even more fun I have found that when my bowels are slow enough for me to feel safe and confident (and with my sphincter that is pretty slow) it feels like it's harder than usual to empty the bladder. Thus far I have managed without catheterisation but now I am scared that the bladder pressure will be too high and so I'm thinking I should probably contact a urologist. But since the paralysis has left me with nerve pain in "that area" I am really scared of starting to catheterise because I am afraid it will lead to constant pain (read MORE pain than now). Plus, imagine catheterising during an IBS flare. At the times when my IBS has been really bad it has been a bit messy at times and I'd be really scared of getting bacterias into the bladder when catheterising... I have not had a UTI for ages and I don't want one now that I have IBS since antibiotics could make the IBS act up...
I just feel like screaming... Any comments that might help, cheer me up et.c. are extremely welcome...
/Ulrika, IBS-D
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I don't know about most of that stuff, but a coment about the iron. Iron tends to be constipating, so it may actually help slow things down a little for you. I'm the opposite, so I try to avoid too much iron. Maybe knowing that will give you a little piece of mind. Hope you can find a solution to the other stuff.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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(((hugs)))
I'm sorry you're going through a rough time and hope you feel a lot stronger and positive soon.
Godbless
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Wow sweetie, that's is a lot of stuff to deal with. I understand your apprehension. I am not sure how your medial system works over there but try and be brave and strong at the doctors. If they try to push you out the door with just exercises, tell them that you feel that isn't going to be enough. I know its very hard to stand up to doctors as they are supposed to know whats best for our care but I have found that we have to advocate for ourselves.
I know you have the courage and strength in you to do this. Take a deep breath. Write down your concerns to take to the doctors with you. Its ok to feel overwhelmed, this is some serious stuff but you can do it! 
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Taking it one day at a time.....
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One of the things that I find annoying is that the docs can't seem to collaborate to find a solution. It's so screwed up that the patient has to bring up other issues that could factor into the situation and then be responsible for having those issues checked by a doctor. It would be much easier if the doctor you're seeing could say, well, ok so you have bladder issues and nerve pain too, well then I will send you to a urologist to have a checkup and then we'll discuss the best overall solution...
Wouldn't that be great? I am on part time medical leave from work but it still seems I am working full time since I have to spend so much time and energy doing my own medical research about treatments et.c. and writing letters to my doctors and talking to or seeing them....
So, now that I have complained, how are you Michele?
/Ulrika, IBS-D
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That's exactly what I gripe about as well!!! If these docs would look at us as a whole person instead of whatever body part or system they specialize in, we would be far better off! I too, feel like managing my medical care is a full time job in itself! It shouldn't have to be like this but it seems that this is a problem for many of the medical systems!
I am doing ok. I made the decision to stop the mtx injections. I only agreed to do them because I believed that they would help my hands and feet. They aren't. My hair is so thin from it falling out and the crap is just toxic. It makes me sick and I just don't believe the benefits out weight the risks.
I also have to be off this drug for a MINIMUM of 60 days before we can think about trying to get pregnant. Its just that toxic. I have to have blood work done every three weeks for it as well. I have already stopped my previcid and placquenil.
I have an EMG test tomorrow to rule out the neuropathy. I will see the neurologist the 13th of February and the rheumy the 14th. If they can't tell me decisively whats wrong, I am going to ask to be referred to a pain clinic for spinal injections to block the nerves to my hands and feet. I had this done a few years ago when I developed a rare form of neuropathy called reflex sympathetic dystrophy. It can be a bit dangerous but since they can't figure anything else out......
My D has gone away so I am thinking side effect of either the previcid or placquenil. Or I do have some sort of weird autonomic neuropathy and the Lycria is helping with my gut somehow. Who knows anymore! 
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Taking it one day at a time.....
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Back when I still went to my neurologist at the children's hospital it was really great. He just asked if I had a problem with something (related to the condition I had) and if I said yes, then he simply referred me to the right doctor.
A few years ago about the same time the IBS got bad I had problems with muscle twitching but couldn't get hold of my GP and then I emailed my old neurologist (who is no longer in that exact field I think and by the way he should be retired now looking at his age but hey good docs are always welcome so) in desperation and guess what? Although he had no responsibilities or anything towards me anymore, since I hadn't been his patient for 9 years or so, he wrote a referral to the neurologist for me... I wish I had a regular doctor like that to coordinate stuff...
Hey, great to hear your D is gone! Now that's got to make you feel a bit better right?
I hope you get the proper diagnosis from the tests. And I hope you get some help. Neuropathy and nerve pain is nasty stuff.
I actually think in general people who have had the paralysis condition I have had but who are in wheelchairs because they didn't recover as well as I did, typically have the following priorities as to what they would want to fix if they could. (Of course provided they have some mobility, I think for tetraplegics the situation is of course different.)
1. Bladder/bowel/continence issues
2. Pain
3. Mobility
You mentioned having to be off the drug for at least 60 days before trying to get pregnant. Does this mean you're thinking about trying again?
I want to start trying soon too. In my dreams, i.e. if everything goes the way I want it to go, I get good help with the sphincter problem and bladder issues this spring and we can get married and start trying to get pregnant this summer. But I am worried it might take longer. The docs have a tendency to really take their time between tests, treatment, possible surgery et.c.
I'm only 27 (soon 28) so I'm in no real hurry in that way, but with the health problems I have had over the years I tend to think sooner is probably better than later... Plus it's economically good for me if I can have my first child while still being employed as a PhD student. Plus (and this is a big thing for me) my parents aren't that young (mom is 67 and dad is 78, soon 79) and dad has a pacemaker and has had some more heart problems this summer and needs all kinds of meds and he is more tired than he used to be, and I just feel it's so important to me that my parents get to meet their grandchildren. So for that reason too I think sooner is better than later...
I hope things finally work out for you now. And I hope things work out for me too. 
Big hugs,
Ulrika, IBS-D
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Wow, your old doctor sounds great! Too bad there aren't many doctors like that left!!
Yes, Will and I have talked a bit and if I can continue to improve, we would like to try to get pregnant this summer. I need to get my hands and feet under control a bit more but otherwise, I think I am as good as I will ever be.
I am 36, will be 37 in August so my clock is ticking. It typically takes us about 6 months to actually get pregnant so I don't want to wait too much longer. I will start cutting back more meds in the next few weeks but the mtx was the big one. Its a category X for pregnancy. The rest of the stuff I am on shouldn't be that big of deal to cut back on. I am not sure if I will be able to totally stop my zoloft but I will cut back from the 100mg I am on.
I will need to make an appt with the RE (reproductive enocrinologist) to find out exactly what treatments I will be on. I think she will keep me on the steroids to help lower my immune system and give my baby a better chance. I think I will also be on daily injections of a blood thinner.
I am having the emg today and have appts with the neuro and rheumy in 2 weeks so I guess it will really depend on what they have to say!
I am trying to prepare myself mentally for losing another pregnancy but thats a hard thing to do. I know I need to be positive but I also don't want to get my hopes up to high. Losing 5 already has been very traumatic.
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Taking it one day at a time.....
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I hope your appointments go well.
I can't imagine what it would feel like to go through what you've been through with your pregnancies. I know I am scared of miscarrying (I am totally neurotic about most things in life so I bet it will be no different with pregnancies ).
I really hope it will work for you this time. I'll remember to include it in my prayers. Keeping the steroids to suppress your immune system is probably a good idea. I'm no expert but it sounds logical to me.
I understand it's better the longer the babies stay in the uterus of course, but what is the limit when it starts being more low risk to get them out?
/Ulrika, IBS-D
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Well, I have heard of babies living after being delivered at only 23 weeks. Thats rare. When I was pregnant with the twins, 35-38 weeks was the goal, of course 40 weeks being a normal gestation. I think anything over 30 is usually ok with a little TLC though.
The farthest I made it was 13 weeks and that was with the twins. Most of the time, you loss them in the first tri-mester, or first 12 weeks.
My appt absolutely SUCKED! I survived the electric shock part of the test relatively ok. Than the tech says he is having a special doctor come in and do a needle conduction study. I was like, man, you have got to call it something different, any test with needle in the title can't be good!
And, it wasn't!! They repeatedly stick this long needle into your muscles and have you tense and relax. The jabs to the neck were the worse. Although I already have a HUGE bruise on my calf! Ugh. Ouch!
They said there is some residual nerve damage from my ankle injury and RSD a couple years ago in my ankle but otherwise, the results were pretty normal. Apparently the lowest score they will call normla is 40 and all mine were in the low 40's, so not optimal but considered ok.
They said they don't see anything to be causing the swelling and pain in my hands and feet. I will talk to the neuro doc herself in 2 weeks but I don't expect much. They said go back to the rheumy who sent me there in the first place! Can we say run around??!!
 
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Taking it one day at a time.....
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