Acacia, Lactulose, Miralax, Zelnorm, fluids, fiber, the "Diet"
#111951 - 10/10/04 10:16 PM
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MissyB
Reged: 07/22/04
Posts: 67
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Guys, I'm trying EVERYHING, I mean REALLY. I want to be normal, not like this and nothing is working. I saw the GI Dr 12 days ago and he put me on Lactulose in addition to everything else, he says he only gives that to the worst people, (you know what I mean, I don't *think* he thinks I'm the worst, lol) What kind of reaction will I get when I tell him the Lactulose isn't working? I'm afraid he will think I'm lying and I'm not really doing everything. I saw his eyebrow go up when I told him all the other stuff wasn't working. All the lactulose is doing is giving me terrible bloating and gas, but nothing is moving. I mean to the point where my belly button is no longer an "in-y" it's an "out-y" I HATE being like this, it's so embarrasing. I feel like I should never eat again sometimes, then other times, maybe if I just eat something it will trigger something to move. I feel like it's something more than IBS alone sometimes, but he's made it clear he doesn't, and I wonder if he's be open minded enough to change his mind now or if he'll just say "I don't know what to tell you" or something. Can they do that?
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Not everything works for everyone! How much SFS are you taking? As you are C, you might find another SFS works better to get you moving. I know Kandee takes psyllium - it causes gas but seems to work better on C.
How much insoluble fibre do you eat? When you were diagnosed, did you have a colonocopy done? If so, then I'd guess the diagnosis is safe.
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Oh Sweetie, been there, done that! Its miserable!! A few years ago I was put on the miralax and I'm still on it. It sounds like you have tried it? How long were you on it and at what dose before you decided it wasn't working?
The Zelnorm I find I build up a tolerance to very quickly. I "save it" for bad attacks but I don't find that to be a long term solution at all.
As mentioned, people with C, tend to need more insolubles in their diet than teh D people!
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Taking it one day at a time.....
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Oh yes, in case I'm confusing anyone, I'm on all of the above, and getting no results. I feel like I spend my whole day downing goop and concotions! I got the IBS book 2 months ago and have been following it seriously, learning what foods set off the painful cramps has been invaluable. But the C is not letting up. I almost feel like my intestines are paralyzed because they just don't move. I won't go until I am absolutely stuffed all the way to the top, then only enough to relieve the immediate pressure, I don't feel any control in between. I was on Benefiber with poor results until I got my acacia, which so far, makes no difference. Neither does the Lactulose or the Miralax.  I am frustrateed because I have tried everything I can dig up to help myself naturally or medically the last 3 years and it just progressively keeps slowing down no matter what I do! I had an episode of C about 3 months ago where I didn't go for 2 1/2 weeks regardless of all the fiber and medicine, I ended up being in the hospital for 6 days with a tear and bad infection, and had to have PICC line for almost a month. I had a colonscopy afterwards to make sure everything healed, and it did. But this is why I get so nervous, I don't that whole thing to happen again 
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Ps, I have tried psyllium, and it too only give me bloating and cramps, but nothing moves, and I've been on the Miralax since that time 4 months ago that I was in the hospital. And curiously, something like exlax or dulcolax WILL work, but they will cause me such extreme pain I am sick to my stomach the whole day, I also know they are bad for you so I don't want to use them, and my Dr told me not as well.
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I'm sorry you are having such a rough time. How much SFS are you taking? It took me a while to get to a high enough dose that I started having anything close to a regular BM.
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How much miralax are you taking? I usually fill the cap up to the line and take it in the am on an empty tummy. I mix my Acacia right in with it. After drinking my morning goo, I'll eat some oatmeal or taost and usually have a BM. If I find myself getting backed up, I will add a second dose of miralax at night for a few days.
Be sure to take it before eating. Be sure to drink a lot of water. It is an osmotic laxative, meaning it pulls water into your colon to work. If your are not getting enough water, it can't work right! I know the last thing you feel like doing is exercising but it does help. Even getting out for a walk after dinner will help get things going.
Also remember that use C people usually need more insolubles in our diet. When I first started Heathers diet I was confused and thought all insoluble stuff was bad. My C got so much worse! We need the insolubles, we just have to be sure to eat them properly!
For immediate relief, try a glycerin suppository. They will stimulate things down there and usually produce a BM within minutes. It probably won't give you full relief but it should start the ball rolling! In the meantime, try increasing the miralax. My dr told me I could play around with the dose as much as I needed to! When you increase the dose, you may feel a little more bloated at first (gee, just what you need!) but it will go away so stick with it!
Feel better soon sweetie, I know how miserable it can be!
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Taking it one day at a time.....
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Have you had any tests done?
If you are not comfortable with this GI, you can always get a second opinion. If he does not believe that what he has prescribed is not working for you or you are not at your "worst", he need to experience it - just for 24 hours!!!
I hate Drs. like that and do not tolerate them. You need him to help you, not make you feel inferior or stressed.
Express yourself to him. If he still does not change, he does not deserve to be called Dr. and I would move on to another GI.
This happened to me and I moved on, I'm glad I did.
Hang in there.
Lene
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God never promised life would be easy, but he did promise to provide a way out!
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or did I just get dumped by my Dr?  he says he's never had anyone on such a heavy regime before, he want me to go to Mayo because he doesn't have access to their motility testing or experimental drugs. (experimental?  )
After I go there, do I go back to him if they figure anything out? I wonder how long this will take.
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Mayo clinic is one of the best medical centers! I think its a good thing to go and see what there dr's have to say. Not sure about who would do the follow up, I guess you would have to ask them that! Have you made your appt already?
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Taking it one day at a time.....
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Michele,
Thanks so much for replying. I really appreciate it. I feel like I'm at the end of the rope. I have seriously tried everything I can think to do for 3 years now, including the voo-doo medicine (that's what I tell him, as a joke  ) of my buddy who's a naturapthic as well as all the traditional medicine and all the givens (fiber, fluid, etc). I'm just going to try to see this referral as a positive and not feel like I'm an annoying patient he wants to dump.  and I hope I can go back when this is over.
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Missy
#112307 - 10/12/04 09:38 AM
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BL
Reged: 06/01/03
Posts: 3522
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I'm one of those C's that cannot tolerate soluble fibers. The more I took of them, the worse my bloating and pain was---and my system was paralyzed. It wasn't until I quit taking them, that I found relief and started having BM's on my own.
If they're not working for you, try stopping them for awhile and see if you get better. Just be extra careful what you eat. I always have about a half piece of bread before I eat, and I try to eat small amounts at one time. Anytime I deviate from this routine, I'm in trouble~
Good luck to you! I pray that you find some relief soon.
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Honestly, they really do help!!
I've been in the process of moving to a different state over the last few weeks, and was doing the best that I had been since starting this diet in July. Well, 2 weeks ago I ended up C again. I think I averaged 3 "small", hard and painful BM's a week, at most. Naturally, by yesterday my stomach looked like an inflated balloon along with so much discomfort that I had a hard time sitting down. After desperately trying to do anything and everything I could think of to feel better, and was unsuccessful, I finally got in to see my "new" chiropractor at 4:00 yesterday. They took some x-rays of my spine, among other things, and came to the conclusion that my lower back (way down by my colon) and my neck (which has nerves that are directly connected to the same nerves attached to my colon) were very much out of allignment, which means they were cutting off the supply to the nerves and blood vessels to those areas. He did some manual adjusting which I figured he would do, but he also used this thing called a "Chi Gong" which is placed on your lower abdomen and "pulsates". It sends out a certain type of pulse that helps the gut "relax" and improves function. Not only that, but he's planning on using some kind of needleless acupuncture to help things continue functioning properly. This morning I woke up with very little bloating AND I had a successful BM (I didn't empty completely, but it was one that helped me to feel even better).
I'm not sure what your financial capabilities are, but a lot of chiropractors are usually willing to work with patients financially to be able to treat them. Also, most (not all) insurance companies have some kind of coverage available.
Every Chiropractor works differently, but the ones that are into "Wholistic Medicine" usually operate close to the same. This may not be something that you're willing to try, but I thought I'd at least tell you about it since you seem so desperate to feel better. I hope that you are able to get some kind of relief soon. Good luck with everything.
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~ Rachel (IBS-C)
If life hands you lemons, make lemonade!!
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Re: Missy
#112320 - 10/12/04 10:40 AM
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ptillen
Reged: 06/27/04
Posts: 406
Loc: Milwaukee WI
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Wow, no kidding? No fiber supplement at all? I thought I was backward or stubborn or something cause I didn't seem to be tolerating them at all, and seem to do better without them.
There's that number, 25-30 g of fiber that we're supposed to be getting every day. Are you concerned that you aren't meeting that requirement?
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I have been meeting that number for months now and it's not helping! I'm going to see what they say at the MC.
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YES! A very good one, I mentioned in another post that my good friend is a naturapathic physician, he is also a chiro, and he has been treating me for years. I'm serious I've hit rock bottom here  I have been open to everything to help myself, and I've tried it all. Hoping they will have an answer for me at MC.. thanks for replying 
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For Missy
#112510 - 10/12/04 06:09 PM
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puddytat55
Reged: 10/11/04
Posts: 53
Loc: New Jersey-dont laugh!
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I just read a lot of your correspondence and have to ask you how you made out at the Mayo Clinic. I am new here and can identify with your "hard-case" C issues....I've been hospitalized too because of severe C.....I found that a permanent daily regime of Miralax helps keeps a soft stool for me even if I dont poo daily. I am curious what the clinic had to say...can you share it?
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Puddytat55-I tawt I taw a puddytat!
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Re: Missy
#112511 - 10/12/04 06:13 PM
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Sheryl
Reged: 10/04/04
Posts: 26
Loc: PA
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Missy,
Are you sure that you're not experiencing inflamation inside? I find that when I am inflamed inside....then my body reacts by shutting down...no peristalysis...and then I bloat up like a balloon with lots of gas throughout the day to boot. It is awful...I can attest. But I do notice that if I hang in there and eat very blandly for a solid week, my intestines heal and then out of nowhere my system begins to function again. So the idea is to take whatever supplements you can to heal the inflamation if this is the issue - Pantothenic Acid, Quercitin, OilSmart (EFA 3, 6, 9), etc. And you need to give to yourself lots of love at this particular time. I'm not talking about narcissistic love....I'm talking about doing a type of Yogic breathing where you focus your attention onto your tummy and Inhale as deeply as you can...8 counts and hold the breath for as long as you can and then on the exhale....breathe as deeply as you can into the belly and letting go with your whole being. If tears well up...give yourself permission to cry. Most of us are shallow breathers...we don't breathe all the way into our bellies. Ironically if you go to massage your belly...the energy will just remain more struck. You have to almost massage your abdomen as the Reiki folks do...in the air a little bit up away from the tummy. If you do little circles up the right side across the top and then down the descending colon....you may be pleasantly surprised to feel some movement occur. Our bodies extend past the physical parameters. If the energy is stuck anywhere in our bodies...the organs in that area will not be properly nourished either. Also I'm learning that the emotional component of this disease for me...is a life lesson for me..that I need to trust more completely what I get on the inside of my heart and mind. People with our condition...me included...have problems with being able to fully trust what we get on the inside. We also don't know how to "go with the flow" of life. So a mantra might be, "I let go....I let God...I surrender this condition to God...I surrender all that I am and all that I am experiencing to God." something like this.
I know what it's like to get like this...and then the panic and fear sets in. And this is all you can think about. But you cannot be loving yourself and in fear at the same time. Whatever you can do to be truly loving to yourself, boubie (Yiddish for sweet/ dear one)this is what you must do. You are worthy of experiencing great health. Follow that inner loving voice...it knows what is in your highest best interests.
Hugs,
Sheryl
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To every problem, the answer is love.
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Puddytat,
I haven't been yet. I am waiting for my GP to call. They have to get an approval from my ins. since Mayo isn't contracted with them, but if a Dr refers you, they can hook it up (Gosh I HOPE they say yes) I'm scared they won't and since the GI Dr says he doesn't know what to do, then what? I hope this won't take TOO much longer,
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Hi Rachael,
You may be onto something there. I sit at a desk all day long (technical writer by trade)and whenever I've gotten one of those fifteen minute chair massages, the therapist always comments on how terribly tight I am in my shoulder and neck muscles. And since I suffer from C and from times when my peristalysis completely stops (and usually when it stops, it doesn't mean that the chime is hard...it can actually be liquid inside), I do wonder if the "energy" or blood flow isn't reaching my abdomen in the way that it should. My candida seems to be under control, but I did notice that when I began to practice Chi Qong (a form of Chinese Yoga), that I began to move more frequently. There's a definite "nerve"/ "muscle" coordination issue that comes into play with our condition. It's not just about the internal eco balance everyone talks about (alkoline/acid). Come to think of it, when my mother was alive and it was discovered that she had Chrons Disease prior to her getting cancer, she had fallen on her coxys bone and she just wasn't right since. Wow...Rachael...it's like putting a puzzle together. You really may be onto something here. I'm going to a Mind/Body/Spirit Exp today...I'm going to ask around about this.
Thanks for sharing this with us.
Hugs,
Sheryl
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To every problem, the answer is love.
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