posted
Please. I cannot have bm's unless I use a stimulant laxative, and even then it's just chronic diarrhea.
Feelings of having to go all the time coupled with abdominal pain but an inability to defecate upon urges. 100% torture, 100% of the time. Intentional OD in April due to severity of these symptoms.
Gastroparesis, pelvic floor dysnergia and one medium-sized diverticula have been diagnosed. Have evidence of past chronic gastritis, as well. Symptoms all stem from my autonomic nervous system dysfunction (start of small fiber axonopathy).
Lyme is a common cause of polyneuropathy, and I did heavy duty treatment for Lyme, Babesia and Bartonella over 4 years. Have been doing IVIG for the last couple of months, but no improvement, yet.
In New England, but willing to travel anywhere for help. So far, no luck with the big name hospitals in Boston.
Please, somebody out there make my life by sharing with me the name of a Lyme-aware gastroenterologist or equivalent neurogastroenterologist...if one exists in this country.
Thank you in advance, Told you I was sick
(breaking up the post for easier reading for many here)
[ 05-29-2017, 03:23 AM: Message edited by: Robin123 ]
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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posted
I found two names, but they are LL Pediatric Gastroenterologists (sent you a PM). Contact them and see if they can help you or refer you to someone.
Here is a very informative article about "GI Manifestations of Lyme & Associated Diseases":
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm sorry to hear that you are suffering so much right now.
I also am very very sick right now. I have Lyme & Co's along with several other serious health conditions.
So please forgive me as I cannot write a detailed post/response tonight. I will try to share what I feel is most important.
Over the past 12 years, I have literally seen countless well- known GI specialists. We have learned much but there is still much more to figure out.
Severe gastroparesis led me to see a top motility specialist. He was able to prove that I had Vagal Neuropathy along my entire GI tract.
It was so bad that my GI muscles even failed to receive and respond to an electric stimulator.
For a long time, I suffered with severe constipation. By this, I mean 1BM per month. I understand, that's not comfortable!
What finally worked/works for me is Miralax. Serious.
Get your PCP to call in an RX for "Polyethylene Glycol Powder for Oral Solution" 527 Grams per bottle, insurance should cover 5 bottles per month.
Miralax passes through the body without absorption. You cannot overdose with this.
***You must always drink 1cup water or Gatorade with each "cap" or dose of Miralax!
Since you are super constipated and uncomfortable, you can go ahead and buy Miralax over the counter. Use the dosing cup and mix with your favorite drink.
You can safely take the whole bottle.
Do not take other laxatives at the same time though!
When you have your BM depends on how constipated you were & how severely dehydrated you are.
Warning, sometimes when people are severely constipated, as Miralax begins to work, it might cause some liquid stool leaks. This is because liquid sometimes sneaks around hard stool first. It takes the Miralax longer to hydrate & break down the hard stool so it can be released as well.
You will have to play with Miralax doses to see which one works best for you to take daily so that you can stay regular. After your initial clean out BM, try about 4 or 5 doses as a start for the next day, then adjust doses daily until you find the one that works for you!
Take care!
Posts: 5237 | From here | Registered: Nov 2007
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posted
I also have big GI problems I believe have a lot to do with my dysautonaumia. Here in southern massachusetts Ive been to 6 GI docs including one in boston,they all stunk. Im sorry I can't help but I also would be very interested if you find a good GI doc.
I did an upper barium GI test and it took three times longer for the barium to pass than it should have.They said it was my intestinal muscles not working well and probably the dysautonamia.
Also takes a lot longer for laxatives to start working for me that they should,colonoscopy clean out didn't start working till about 18 hours after drinking the mag citrate and still didn't clean out good.
I have all kinds neurological problems and insomnia,fatigue and wooziness all stemming from my digestion and GI tract.May I ask if your dyautonaumia and Gi tract are giving you other symptoms as well. Thank you.
(breaking up the post for easier reading for many here)
[ 05-29-2017, 03:24 AM: Message edited by: Robin123 ]
Posts: 227 | From fairhaven ma | Registered: May 2015
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
What about using magnesium citrate, etc.?
I have had this problem now for about 1 1/2 years. In my case, I think it's due to using Lyrica at night, as it started abruptly when I started the Lyrica for the horrific CRPS/RSD pain. And I can't do without the Lyrica at night, much as I'd like to stop.
Of course, it may also/instead be from Bb & Bart.
I'm doing daily coffee enemas for the breast cancer, anyway for over a year now.
I tried Lactulose, when nothing else worked, before I got the cancer diagnosis. But it took a long time to work, and then I suddenly had taken too much, so horrible gas, etc.
What a mess!!
Posts: 3771 | From around | Registered: Mar 2008
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posted
You could try giving up dairy. Great help to me after suffering 11 years with chronic constipation.
With all the non diary milks out there and even cheese made from nuts, it's really not too difficult to give up. The reward comes every morning.
If you think you can't give up dairy, extra vitamin C and a couple of brazil nuts a day help. And the best magnesium product for me was 3A Magnesia. I just found my bottle and it expired in January. There was a time I thought I could never live without it.
I hope you find your answer.
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
You could try drinking mangosteen juice, an anti-inflammatory juice. It has the capacity to stop constipation. I like the Mango-Xan variety as it's the most tart. Available in healthfood stores and online.
Posts: 13116 | From San Francisco | Registered: May 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I wish that mangosteen juice had done any of the great things it has done for you, Robin!! Sigh.
I still take it, although it hasn't helped my eyes or the constipation (this is truly industrial grade, nothing has worked, other than the lactulose, which I gave up, due to the horrible side-effects of that).
If it does help, it isn't discernible.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Thank you all for your input. I have exhausted all of the remedies in which you write. My issues clearly stem from neurological manifestations (on my gut) of these diseases.
I have been sickly since 2004...but chronically ill (as in daily) since 2008. However, I never thought that things could get this bad. That I'd be so compromised where I physically cannot move my bowels.
Please let this misery leave us all.
Thanks again, Told you...
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Are you getting the best TBD treatment that you can get, covering all of the possible infections? I'm sure that you are addressing this the best that you can. Are you on IV, or have you been for a good, long while?
Does Miralax that sammy mentioned help at all, or just, as you say, give you diarrhea?
I, too, wish that I could wave a magic wand for myself, you, and all of the rest oaf us. I, too, am just barely hanging on by a thread. Not that that helps you, except to know that you are not alone.
Posts: 3771 | From around | Registered: Mar 2008
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