Belly Bloat
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October 9, 2008 at 5:11 am
Just a quick update, I saw my doctor (internist, not neurologist) yesterday – he had a med student with him who was thrilled to see a patient with CIDP…:rolleyes: anyway, we’re running some blood tests and I’m getting an ultrasound and chest x-ray to see what’s going on. The doctor didn’t buy my “maybe it’s just gas” theory and thinks it could be liver or kidneys or both. He says depending on how much fluid they find when they do the ultrasound they might decide to just stick a needle in and drain it off so they can test it and see what the problem is. They had a lot of trouble getting blood out of me yesterday even though I’d taken my daily aspirin… my blood was so thick it oozed out like syrup and then just shut off after a teaspoon full. OIK! At least it wasn’t blue or some other weird color…
I’ll keep you all updated on the diagnostics as I know there are some other folks with the belly bloat problem. Oh, and we still don’t know whether the ascites is caused by the CIDP or the IVIg but may be able to tell that if they drain off some of the fluid in my belly.
Have a day ya’ll, I’m heading back to bed!
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October 9, 2008 at 6:08 am
Wow Julie, thanks so much for posting! I have recently developed belly bloat within the past month and a half. Doc thinks it might be IBS, says I’m gassey:rolleyes: But I had Irritable Bowel Syndrome prior to GBS. He said to try GasX or something similar for 2 weeks then see him again. He also asked if the bloating happened after I started Plavics. Yep I said, he said a quiet SOB 😀 then wait a minute and left the room, came back and said stop the Plavics, bloating and gas I’m guessing is a side effect. So I’m anxious to hear what your doc figures out. I had a PET Scan about 2 months ago and all was well except some uptake in my uterus. I had a biopsy and all was well. So doc doesn’t want me to have to have a CT or Sono of that area just yet. I was thinking some internal organ was swollen or maybe a hernia…but he said nothing was swollen. I go back to see him on Oct 15, will you have your results back by then? Thanks again and I hope all goes well with you!!
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October 9, 2008 at 6:48 am
I’m not getting the ultrasound etc. until the 16th so I won’t know anything until then. It’s not gas for me, I take Gas-X and Pepcid and all that does it make a little more room in there for whatever is taking up all that space. I don’t know what it is but my kidneys hurt and liver is poking out and hard as a rock – doesn’t bode well for visits to the Tavern. 🙁
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October 9, 2008 at 6:54 am
Julie do you have the tight band around your back and ribs? I do and it feels like it is sqeezing so much that my belly (lower abdomen) pokes out. Good Luck on the 16th and let us know how you make out with the tests.
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October 9, 2008 at 7:48 am
Hey Julie! Have they checked you for UTI infection. I know I keep a UTI all the time and get belly bloat when that happens. My urine alway’s shows no infection at the doctors office and when they send it off to the lab it comes back positive. Just a thought here but you could be having another problem too.
Hate to hear you are having such a hard time right now. Can be very frustrating too! I will keep you in my thoughts and hope that they figure out what is causing the problem so you can start seeing recovery soon.
This GBS and CIDP stuff for us all is a major pain! I feel for every one of us in here. Some of us have it easier than others and some don’t get a break.
I pray that we all someday see a cure for this. An easy treatment plan that we have no needles and no IVIG’s. Just a simple pill that cures us!
Good luck Julie and have a nice sleep in! Hugs -
October 25, 2008 at 3:20 pm
Hey Julie been wondering…have you gotten any results from your tests? Hope you received good news! Best Wishes!
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October 27, 2008 at 5:31 am
Hey there,
Yes I got the results back… while I don’t actually have the written report from the ultrasound and chest x-ray I have the verbal “everything looks OK” from the nurse. My internal organs are not enlarged, my lungs are not coated with cancer, though there was again “some fluid” in my abdomen though not enough for them to panic about. My blood tests were not all that out of whack… I had a low CO2 level, a high ASG level and high protein level (duh… just had IVIg). So that’s good news in that there really isn’t an alien ready to explode out of my belly… but bad news because I’m no closer to figuring out the problem.Meanwhile I had treatment again and this time we slowed the rate down to 100mL/hour down from 200mL/hour and lo and behold… while my belly is still enormous and my hands and feet still puffy, it doesn’t hurt anymore and I lost an inch in the last week (a permanent inch – I can gain and lose an inch and several pounds every day just from fluid).
I still think muscle spasms are part of it too – the two that run straight down your belly (too lazy to look up the name) get really tight on me. You can feel them if you run your finger across my belly – feels like fat guitar strings twanging away. I’ve been trying various things on this but the only thing that seems to be helping long term is daily stretching off and on throughout the day. I used to spend a couple of hours working out daily and at least 45 minutes of that was nothing but stretching. I’m trying to get back to being able to stretch like I used to and I’m finally starting to notice a difference, things are finally coming back, I even reached my toes one day last week which I haven’t been able to do for two years.
So I’ll keep trying to figure out the belly thing but it seems like for me maybe it’s just a combination of things adding up – not to get too “female” on you all but the situation is quite magnified around that time of the month which also lends credence to most of the swelling being fluid retention.
Julie
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October 27, 2008 at 12:11 pm
Julie,
So sorry you are having this problems. Wish I could give you a hug! I am so sick of all this crud that just pops up!! Everytime we relax and think things are ok, something else. Good luck and say hello to all of your nature friends for me? Does it get very cold in winter where you are, or do the little animals tough it out and still hang out? The squirrels and chimpmunks are going crazy on the walnut tree and acorn tree here. Surprisingly the robins are still here? The ducks and geese too. the whooping cranes are in the process of relocating. Maybe I could hitcha ride with them and never come back!!!
DAwn Kevies mom -
October 27, 2008 at 3:52 pm
Julie,
I read your posts and you sound like my daughter, Abby. She has CIDP since about 1 and is now 12 years old. After 2 years of some bowel and bladder problems we are back at Mayo. The gastro doctor told us when he first walked in that 10 -20 percent of kids with CIDP have bowel and bladder issues. Abby does have a bloated or distended stomach, has had pain with urinating and urine tests say she is fine, the last year it has been a problem with contenance (having accidents). A recent xray showed swelling or inflamation of the nerves at the tailbone going to the bowel and bladder. When they did the ultrasound of bladder to see if she could empty herself the amount left was considered within normal ranges. Abby has had a full bowel for the last 9 months, xrays showing little improvement, that is even with 1 capful of Miralax a day and 4 teaspoons of castor oil a day. Last Sunday she had to take 1 bottle of Magnisum Citrate and 2 Ducalx, it took 7 hours but it seemed to empty her bowel. Abby feels like she has more control of her bowel and bladder now and not as blooted. We don’t go back to Mayo for next trip till Nov 11th. Abby’s protein from a spinal tap last month was 67 and 45 is considered normal for her age. Does any of this sound familar? Abby had such BAD GAS it was embarresing for her around other kids.
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October 27, 2008 at 4:53 pm
Who the heck is cidp kid? HaHA!! OMG woman I can’t believe you posted! Dr. H, well his nurse just called back. He is going to give me a jingle tonight. I’ll call you when he does. Sorry I intruded Julie, it is just Hilarious that my buddy posted!
Dawn Kevies mom -
October 27, 2008 at 6:47 pm
For me, when I first started on IVIG, I had lost over 25 pounds due to loss of appetite and lethargy from the CIDP.
Each and every time I got a round of infusions, I would gain exactly four pounds of weight. Sort of equal to the IV pre-meds and IV liquids infused into me…regardless of my well-hydrated pre-infusion weight. I would lose two of that four pounds over the next month only to be repeated again with the next infusion. It DID add up? My rationale for it is that IT IS A BLOOD PRODUCT and would not be rejected as excess fluid by my body other than thru normal blood dispersion means. Makes sense to me, I don’t know if to anyone else tho. I’ve lost lots of weight thru other issues tho and it’s a two edged sword… we shall find out after heaps of tests up blind alleys?
And any subsequent weight loss is akin to the life span of IVIG in our bodies [w28+/- days]
Yes! All that weight seemed to grow in my abdomen too! It would get to the point that I’d hate to see doc’s not informed about CIDP and IVIG as they’d become disturbed about it. My neuro just went…Hummm…OK. And wasn’t worried as there weren’t any other s/e’s.
Changing brands of IG did help stop this issue tho, it depends on the mixture that you get and how well you tolerate it I think.
That you went slower this last round of infusions and felt fewer side effects makes sense to me! Keep on that track? Rates make such a big difference in how well we recover and avoid side effects. That all is well documented.CIDP Kid? Do question your docs more about the ‘autonomic’ aspects of Abby’s issues, gastroparesis and other issues can and do occur which are NOT fun for adults to encounter let alone a 12 year old girl! Yes, there are meds and some therapies that can help, but do approach it all fully informed and with caution. As for Gas? Have her tell folks that she’s working on her own ‘power plant’ or something…that’d get them thinking at least?
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October 27, 2008 at 9:28 pm
Well it certainly sounds like I could use that IVIG stuff if it’s going to make me loose about 25 pounds. I need to loose weight! Julie I am glad they found no real serious problems going on but sad you are still having to suffer! Maybe it will go away soon!
I get those spasms in my tummy too. Even my lung muscles do weird movements. I wished my doctors could crawl in my body. Would be much easier than explaining my symptoms! LOL!
Boy have I have some crazy stuff happen over the years! Feel better soon! -
October 28, 2008 at 4:19 am
Thanks for all the messages ya’ll. Yeah Dawn, I do get sick of there always being something but I try to remind myself that even roses have thorns. 🙂
Thanks for the input CIDP kid – haven’t seen you around in awhile! I think the autonomic stuff is definately part of it. I have a lot of trouble chewing and digesting food so it has a tendancy to sit down there for way too long unless I take action to clean my pipes out. Naturally this causes bloating and gas too. I take a Gas-X which helps somewhat, yes it’s embarrasing at any age but at least at my age I’m pretty much beyond humiliation… I’d not like to be going through this at age 12. I’ll try taking a regular dose of Miralax and see if that helps – though I can tell you right now I’m not going to enjoy it much.
homeagain – what you said about the IVIg not being rejected makes total sense to me. In fact my nurse has had me taking low-dose diuretics (Pamprin) and while I do urinate more frequently I’m also still swelling. Grr… my fingers are so swollen now I might actually have to get my wedding rings cut off. 😡 I’m so stupid, I knew they were swelling but I was too stubborn to give in and take my rings off… now they are stuck!
Linda, the IVIg makes you gain weight – homeagain lost weight before the IVIg (as did I) but gained it back on the IVIg.
Well please feel free to keep the discussion going, more data is always welcomed!!!
Julie
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October 28, 2008 at 7:18 am
Hey Julie! Hmm! Think I will pass on that IVIG! But I might not have a choice once the doctor see’s me on the 6th. Ever since I had my thyroid removed I am seeing myself gaining weight. Arfff! I’ve gained 9 lbs and don’t like that too much! Right here during the holiday’s too! The best time of the year for eating things you only see during this time frame! What a bummer! LOL! Hugs
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October 28, 2008 at 12:21 pm
I lost all the weight right after my onset, I had trouble moving around [plus exhaustion + meds] at first and lost a lot of weight. It took a year and several 2nd opinions to get the CIDP diagnosis and the IVIG. Then, I didn’t gain weight until I was on IVIG for another 6 months and then for another year would gain four lbs each month and lose two each month. Now that I’m getting infusions at home, I’m getting a different brand and not gaining at all. I believe it’s different for each person. Believe me, I watch my weight like a hawk!
I DO tho, get that bloatish look after each round of infusions. It does go away in 2 weeks or so, tho.
Julie? I know what you mean about wedding rings! 6 months after my onset my thyroid went wacko and fingers swelled up…I got them off and haven’t been able to put them on again. The whole thought of that all is a depressing thing.
We get thru it all and we will continue to do so! What choice is there really? -
October 28, 2008 at 4:53 pm
My husband bought me a new wedding ring last year after he noticed me not wearing my rings for 3 years. My fingers swell something aweful! He let me pick it out and I got a larger sized ring just in case I gained weight. Glad I did that! 😀 One time when I actually played it smart! LOL! Hugs
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October 29, 2008 at 5:46 am
Well I’ve taken a regular dose of pamprin for the last two days and I can get my rings off now. I usually only take a quarter to half doses of over the counter drugs but taking the full dose seems to have done the trick, for now. I’m going to give the diuretics a shot for a month and if it seems they are making a difference then I’ll do something official about it.
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November 17, 2008 at 2:29 pm
I’m updating this – after two rounds of a reduced dose and rate I have lost 3 inches of the belly bloat. My fingers and feet swell more now so maybe it’s just moved on somewhere else but at least with those I can get the fluid out easier by walking etc. I haven’t had any kidney pain for 4 weeks and haven’t had to take prednisone for meningitis either.
On the other hand I had a major setback/relapse last week right after treatment that had me worried and depressed until I took prednisone for a couple of days and started getting better. I have no idea what set off the creeping numbness this time, I wonder if the reduced dose had something to do with it because I don’t think I had a cold. I went from just the top of my nose being numb one morning to my whole face by that afternoon, the next AM both my feet were numb again and it was creeping up my legs until the prednisone kicked in… I was scared and more than a little bit depressed. I’m doing much better now, my legs are back to the way they were with just some little patches of numbness, my face isn’t drooping anymore and I can feel a little more of it today so I know I’ve turned the corner. I am confused though on what could have set this off – there were no triggers that I can identify… I wasn’t exposed to a cold as we first thought, I didn’t over do it since I was getting treatment, I wasn’t stressed out… the only thing I can think of that is different is that we reduced the dose from 45g/day to 40g/day and maybe my body was used to the higher dose? Anyway, I’m getting better now and that’s the important thing.
So the lesson learned with the IVIg and rate is that even though all my blood tests said my kidneys were functioning fine the fact is that I am finally losing a year’s worth of accumulated fluid now that we have lowered the rate and have no more kidney pain. It’s frustrating to be told everything is fine when you know it isn’t but fortunately my nurse is quite experienced and between the two of us we just bulldozed right over the tests and did what we thought was right. And it worked.
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November 17, 2008 at 10:59 pm
Hi Julie! Ohh I get like that alot with that numbness just to suddenly start acting up. Sure does make ya feel creepy. And the only thing that eases it is prednisone. Hope you are feeling much better today! Hugs
Linda H
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