Gi Symptoms Horrible Pots Symptoms Better

[sisblostg]

Father's day was the last day I ate a full meal. I ate too much but I thought I would spend the next few days afterwords carefully eating and having some extra prune juice and trying to be active. My MIL died the next day and I spent 5 days traveling 1200 miles and my stomach just "stopped".

I had the same "stop" issue a few months ago and took some mag citrate and a liqud diet for a few days and it got better. The dr said to try this again but it did not work. Then he said to try mirlax 4 times a day and after 6 days I it did nothing and I was very "jumpy", it made me feel overstimulated. In the last month I have tried every product and natural remedy I could think of and my stomach just is "stuck" or very very slow (not to get gross but I have not have a full bowel movement, just small ones or liguid, but with all the products I tried liguid is expected). I do not have an physcial obstruction and the dr will only send me to the ER and they say the want to operate but they will not give any solid reason. I am not fully obstructed, my colon/intenstine is not dying, and at first I lost 8 lbs (which was fine since I have a BMI of 25) but I have kept my weight steady. My labs are fine and I know I am getting enough nutrition even though it is stuff I hate to eat. The ER dr does not get dysautonomia at all and we have no GI drs locally.

My stomach feels bad, it is bloated sometimes, sometimes pain around my belly button, my stomach seems to have an annoying pulsating, and I hate my limited diet. I want a steak so bad! BUT my POTS symptoms are better. From April 2010 to June 2011 my symptoms were constant. If I was lying down my pulse was 80, stood up jumped to 150+. I could not spend more then 10 minutes in a store or standing. Suddenly with my stomach being "stuck" my resting pulse is 60-65 and standing 90-100. I was able to go to the mall and school shop with my kid. I wear a pedometer sometimes just to gauge my activity level. Before my GI symptoms I would average about 2500 steps a day(which is considered sedentary). Last week I averaged 10,000 (which is consider active). I felt so normal yesterday. I drove my daughter to her friends house and stayed and talked to her friends mom for 3 hours and drove home. I have not done that in almost 2 years! Obviously I do not feel recovered, since I have pain from my hyperflexible joints when I am active, and the my stomach issues are not fun and limiting. I still doing my POTS treatment. I am drinking my 2.5 liters of fluid and have increased salt intake and taking klonopin as necessary for the adernaline issues.

Is there a reason for the bad GI symptoms causing better POTS symptoms? blood pooling? How long can I let my GI symptoms be like this? is it dangerous(I know that there is "stuff" moving very slow sitting in my colon for a long time)? Since I have possible EDS (my dr is trying to get approval for me to be tested for EDS 4 because of family history) I am worried if my intestines are stretchy and I overdo the eating and do not go to the bathroom enough I could have my intenstine rupture?

[lieze]

It's fascinating to me how our biggest issue changes, it moves to a different body system.

I have found that to be the case since the beginning of this whole ordeal.

And I think you have valid concerns and you are probably doing the right things.

It seems if you continue eating and drinking and going a little through whatever method works that should be a good approach.

The bowel does have a pulse my husband's GI doctor told him of something like 3 beats per minute. In some people this gets interrupted. My husband's does this and he experiences the stoppage temporarily with bloating and abdominal pain. My husband's doctor says this is nothing to worry about and that a huge percentage of his patients have this problem. He said they are working on a pacemaker for the bowel and don't have it perfected yet,

Until then he has my husband on Bentyl and days this will be his best friend. It is an antispasmodic and my husband

in an Archie bunker type of lingo calls it his antispasmoidal.

It always tickles me when he says that.

I'm not sure in your case that something like Bentyl would help you it seems like it might just relax you too much.

The activity you're engaging in-the walking etc I would think would be very beneficial to your bowel performance.

The surgery I'm not sure if I get their objective with that.

In fact even though they might clean you out I think the trauma to the bowel would cause things to slow and you would just fill back up again.

Hmm I wonder if at any point they will consider a colostomy even temporary so the stool doesn't have to travel so far to find it's way out? And let the remaining bowel rest and heal.

You have probably already noted the signs of bowel obstruction. I would continue to monitor for those and if anytime you get concerned I would get checked out again.

I wish you had a stethoscope so you could check your bowel sounds periodically and know what your normal sounds like.

Good bowel sounds are a good sign that things are still moving.

[Lovebug]

I had GI symptoms way before my POTS symptoms. I just thought it was IBS changing and worsening. I went from slow BM's to diarrhea and constant pain in my LUQ. Got checked out at Mayo and basically was told that I was out of shape and it was IBS. It got worse over the next year and I was losing weight. Twice my K+ levels dropped from all the diarrhea that I had trips to the ER with erratic heart beats. Back to Mayo and they told me my IBS was worse but nothing else wrong was found. Note that the gastro-colic reflex can cause severe chaotic peristalsis which results in diarrhea or no BM at all. That's the thing about IBS, you are NOT constipated from lack of water in the stool or lack of peristalsis. The problem is chaotic peristalsis. Then gas can get trapped causing bloating, etc. Well, it's all so unpleasant. Most of my symptoms are GI. I have GERD daily and I've even started gagging like I'm going to vomit but nothing ever comes up (thank God).

The ER likely wants to do an exploratory lap...which is basically done when they don't know what is going on so they go in with a scope to actually "see" what is there. I had this done for my endometriosis. My colonscopy was completely clear so they knew it wasn't anything structural or mechanical but rather my pain was functional. This type of pain indicates IBS.

Just my story....I urge you to stay under a doctors care until they can find out what might be going on with you. Congrats on feeling better and being able to get out of the house! I remember getting better & better and feeling somewhat human again. It is a great feeling. My condolences regarding your MIL. Oh, and I agree with Lieze.....if one body part is good, the other usually "acts up". I tell my husband it is just the part of my body that my nervous system wants to aggravate that day.

[sisblostg]

I do have a stethscope and a good one (I used to be married to a dr but that is a whole other story). My bowel sounds are loud after I drink prune, pickle or apple juice, loud like everyone can hear them. With my new diet which is high easy to digest protiens (fish, eggs) and lots of juiced fruits and some vegies I can hear bowel sounds at selected times of the day. Again liquids are very loud and pass through at a quick pace.

The surgery I heard the ER discussing was a temp colostomy but they didn't get that it is not going to help my slow moving colon in the long run. I have been constipated all my life. My gyn dr was at the Er and he even said, when he did my last transvaginal ultrasound he could not believe how much stool he saw and I wasnt even feeling bloated or bad at the time.

The only thing that works 100% of the time seems to be hormones. About 6 hours before my period starts my I always have a large movement. I can't take birth control pills or hormones (I have factor V). I had an ovary removed and I do not get regular cycles these days so I cant count on one every 28 days for some relief from the constipation.

[lieze]

Have you tried enemas or suppositories?

Are you able to tolerate them and are they effective for you?

I always think it's best to get things moving from top to bottom with the juices and other products but maybe a once a week cleansing enema would help.

I guess that seems too

obvious and probably something you've already tried.

I wonder too if you might get any more tips from visiting an

IBS forum?

I'm trying to think of all the products we used in the nursing home senokot, colace, pericolace, fibercon, mineral oil, metamucil, miralax, bisacodyl, bisacodyl suppository, fleets enema, cleansing enema, high volume enema, soap suds enema. I guess the different methods include irritating the bowel to get you to go, or stimulating it in some way, maybe you need a combination of products and how did I forget good old Milk of Magnesia.

Maybe the miralax 4 x a day was just too much but a daily or every other day regimen would help.

I guess I'm thinking it might take more experimentation and hopefully you move past this bout and things get more normal again.

[janietrudell]

I have been dealing with constipation since I was a child. I have the same problem as you - every day I go a small amount but that is it. Unless I take laxatives and clear out my system it is always full. Very frustrating! Like you I used to go at the onset of my period but that does not happen anymore:(. Mirilax was a miracle cure for me for a few months but now it seems to be wearing off.

Other things that I have had initial success with are; licorice root and chia seeds.

Good luck to you! Please post if you find something that helps!

Janie

[sisblostg]

The other issue I am having I did not mention is that I feel full very quickly, but I am still hungry. The Mayo did say they thought my stomach emptied very slow.

I took the mag cirtrate first which did work a little(but since it turns everything to water it is hard to gauge how well). Then I did Miralx and it did nothing. I drink prune juice every other day in the am. I tried a stright stool softer, then dulcolax (first 1 pill and then 2), MoM, senacot, and an enema. I also tried caffinee, papya, pickle juice, tons of vitaim C, extra garlic, 2 types of that probotic yougurt, and some fish (forget which type my husband made it).

I did not try any laxative with fiber.

I do not think any other enemas are necessary since my lower colon is empty. It is my intestine moving slowly and once something gets to my lower colon it comes out fine. It is getting the stuff from intestines to get to my lower colon is the problem. I explained to the hospital since they think there must be some hidden obstruction that I know things are going through because of a pill I take and corn but it is taking from best guess about 6-7 days.

I can't eat anything with high vitaim K because of my factor V. Im homozegous so unless I want to take 30mg of coumdian a day(that is the dose it took to get my INR to 2.0) I avoid certain vitams and foods and have stopped the coumdian.

The dulcolax, and prune and pickle juice have worked the best. I only took dulcolax twice because I do not want to be dependant on pills.

It is weird because if I take 3 days off of any specials foods or laxitives then I get the best results on the 3rd day. The days I try nothing I'm so bloated, hungry, and my stomach hurts but my pulse is the best and I can do so much more.

I have been seeing and calling my dr but the ER scares me. I am landlocked but in a decent sized city and there is only one hospital for hours and it lacks specialists. I'm not big on a general surgeon doing the surgery a specialist should do. My ex being a dr I know too much and there is certain drs I do not trust(and for good reasons). My father, FIL and countless neighbors have died in this ER due to stupid mistakes. They misread both my CT scans , I had to sit down with the dr and explain it to him and then the same day my husband's aunt was in the ER because of a fall, they did a CT scan and told her she had stage 4 kidney cancer. The next day she found she was fine, it was misread. I hate being stuck in this city (if I were healthy I would love being here).

[issie]

What place do you live that is so bad? Curious since your ID says you moved to a desert to write about certain people from that area. I've found that mineral oil is good if it's been a really long time in going. But, if I take a muscle relaxer about every 3rd day (Bentyl) it is the most helpful. It relaxes the colon so that things move along and doesn't get bound up. Hope you get help and good doctors.

Issie

[sisblostg]

Right now I am scared for my stomach. It is just not moving. I am not nauseous and have not vommitted(the dr said I most go to the Er if that happened). I eat 2 servings of protien a day (usually fish, finely choped chicken), and mostly juiced liquids and some frozen yougurt. I know Im getting nutrition and ebough calories. I have some muscle relaxers, old script. Maybe Ill try one tonight, since they usually put me to sleep and I have not had good sleep in a long time. I just am so torn. I have done more in the last 2 weeks then in the last 18 months, because of my POTS being better. I have driven my kids places, went shoping, drove to and visited friends. Been averaging 5 miles of walking per day. The only problem is this stupid stomach. I know I can't go on like this forever. the other issue is peoeple say wow you look great, because I'm out, lost 10 pounds, and I got some cool new clothes(spent way too much time shopping online the last year) that I'm finally wearing. I told myself if I ever got out of the house again I would dress better. They think I'm better when in fact the stomach issues feel worse then the POTS.

I have Reglan. A dr gave it to me 5 months ago when things first started to slow done but I was too scared because of the stories to take it. Still am scared but I feel like it is one of the only things I haven't tried.

Even my husband is frustrated and he is very easy going because of the medical options. I just want an X-ray to see how much stuff is in my stomach. My dr wrote that I must go to the ER for an X-ray and because all the dr's and hospitals are on the same system in a 3 state area, any dr that pulls up my name sees the note and won't order an X-ray.

[lieze]

Oh dear friend.

I wish these issues were easier to solve than what they are.

I think I would try an enema.

The water has to come back out and maybe it would help flush some of the stool out. Maybe you could add mineral oil to the enema or something that would help lubricate things up.

In fact I had a gentleman that claimed that he hadn't had a bm in 7 days or so and those were my exact orders.

Give him a high volume enema and if he doesn't go send him to ER.

It worked.

BUT...you have to use your own judgement. If you don't think that would work or could be disastrous to introduce fluids into an already bad situation don't do it. Maybe try a little at a time and see if you can flush yourself out???? Just an idea. The enema itself may stimulate some bowel cramping and get things moving.

[janiedelite]

Have you tried domperidone? It can be helpful for nausea and stomach dysmotility and doesn't have the extrapyramidal side effects that reglan has.

[sisblostg]

I'm finally better, well not constipated anymore. I got to see a dr on call since my dr was away. He was a better personality fit. I finally got my x-ray. I had taken lots of natural remdies but I was conservative with the laxtives. He sugested just once to clean things out to take a saline and a stimulant at the same time. I had tried both but seperately. I was scared of this but it worked. I took half a bottle of mag citrate and 2 dulcolax and tons of fluids and that worked (really well). The dr offered me Goletly(that colon prep stuff) just in case because it has electrolyetes but I promised him I drink a ton of fluids and I would add extra powerade. I had a follow up x-ray my colon was empty. Then I had to eat light but not a liquid diet for a few days, kind of giving my body a rest and finally 4 days later I had my first solid regular movement in almost 7 weeks. I have been eating again and just using the prune juice in the am and I have been trying to adjust the right amount to keep things moving but not too fast!

Sadly my pulse is back up some, not as high but I certainly am not enjoying the little freedom I got a few weeks ago driving. I was averging 10,000 steps a day and now I'm at about 6500, which is still good for me. I just wish the steps were further then running around my house! I'm a numbers nerd and I partciapated in an 7+ year study at Yale years ago, it had nothing to do with POTS but it did document consitipation, my vitals and actvity levels. I have found a definite link between my chronic constipation and health levels. I also found that surgeries that required my to use strong laxtives beforehand I had a much longer recovery time. Who knows if there is anything to it, but at least it has given me a project to do while resting.

I had some bloodwork done before before I took my laxitive combo and my vitaim D is lower then ever. It was 12-14 last year and now is 10. The week before the bloodwork I was living on tuna and other fish as my protien and I was taking a supplement. I live in a very sunny 100 degree weather area with not much shade so I get plenty of sunlight. The dr is uping me to 50,000 presciption pill now.

[derekliz]

Pineapple always works for my daughter when she is constipated. Do you take papaya enzyme...that helps.with digestion. Good luck

Liz