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Brenda

Major Bloating Issues

13 posts in this topic

Hi All,

 

I have not posted since right after I was diagnosed with Diffuse in march 2006. I jump in a read occassionally although not as often as I would like. However, reading this post today, I have some questins maybe someone can help with.

 

I have GI involvement, top to bottom, and have from the beginning (actually since before disgnosis). For the past three months or so, I have been having times of MAJOR bloating, lately so much so that you can see the outlines of the intestines (at least that is how is looks to me). When this started, i would get very nauseated and would what I call "throw up air". It is not dry heaves but rather like I am vomiting but air is the substance. (Sorry if I get too graphic) It started out not lasting too long and sometimes the "air burst" would make me feel better. But since it has started, it has gotten progressively worse, such that now it is pretty much an everyday occurrance, with much pain and some vomiting included. I am at a point where I am averaging missing two days of work a week.

 

My GI doctor finally ran tests to rule out non-Sclero related things (gallbladder, etc) and has pretty much told me he can't do anything. Anyone else have these types of symptoms and any type of relief?

 

I have been on the antibiotic treatment and Reglan with no results. Diet does not seem to be a factor as I can eat or drink the same thing two different times and not have the same result each time.

 

Looking forward to hearing from anyone with words of wisdom (or just words!).

 

Brenda

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Barefut,

Yes, reglan is to help motility. I works great for me. Sorry you had problems with it.

 

Brenda, Sorry you're having such problems. I can't believe that there is nothing to help you. Maybe you need a second opinion from a different doctor. Good luck to you.

 

Sherion

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Hello Brenda and Welcome to our family. I'm so sorry nothing is working to help rectify your situation. Are you taking 4 or more Reglan daily? I have taken as many as 6 a day. After over two years I am now down to only 2 on most days. My bloating and acid reflux and burping was bad, but was not as bad as your appears to be. I sure hope you get this under control soon. Have you tried drinking a glass of water with a tablespoon of cider vinegar in it each morning when you get up and about? Old remedy or wives tale? Don't know. But, it works for me. We can learn from each other. Keep us informed with your health, sometimes others are able to really help us out. They have been there and done that. Take Care. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi, Brenda. Glad you finally found your way into the "new" forum. Welcome and hugs to you. Sorry to hear about your problems. I'd be surprised if diet was not at least a contributing factor with this. It could be something like lactose intolerance. For something with so many possible variables, I find useful paths to explore on WrongDiagnosis.com. It is good for the process of elimination while you are working with your medical team. This is a search I did on Symptom: Abdominal swelling. You might also try searching on eructation or flatulence.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Brenda,

 

Glad to hear from you but sorry to hear you are having problems. I can offer a few suggestions as I have some GI problems that no one seems to know how to stop. I have had this problem for over 12 years. I have a positive ANA but have no skin involvement (except I am over 50 and have no wrinkles - a positive note!). Seems mine is all internal with most of it in the GI tract. I am either constipated or running to the bathroom every 20 minutes. It was an unending battle. They have run every test on me and cannot figure out why I get very bloated and sick to my stomach so I had to try and figure it out for myself. Here is what I have found out and I hope it helps.

 

It is not what I eat (like yourself), time of day I eat or anything to do with the type of food. This begins when I am stressed or very tired. It is then that it seems my digestive system seems to just stop. Everything seems to just sit and I become bloated and nausauses to the point where I get bad headaches and cannot get out of bed. I can either wait til this passes and I eventually throw up and then spend two days in the bathroom (sorry for the details) or I can get relief by an over the counter anit-gas medicine. If you want to email me I can give you the products name. I have checked with my GI Dr and he sees no problem with me taking this whenever I need it. At the first sign of bloating or I am beginning to feel tired or worn out I take one or two at night and I am back to my normal self. I cannot tell you why this works, but at this point I don't care. It has helped me lead a more normal life and to me that is what it is all about!!!

 

I wish you well and hope that some of this helps!!

 

Keep in touch!!

 

Sue

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Hi Sue, I was wondering if you could email me and let me know the name of the product you use for bloating and gas and nausea. I have the exact same thing going on.

 

Jackie S.

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SInce scleroderma is an autoimmune problem, it jsut seems to go with others in that category as well. It also goes along with inflammatory issues, ulcerative colitis and the like. My colon was removed 12 years ago. I also have GERD and the beginnings of Barrett's. I take Prevacid for the upper and Canasa suppositories for the lower. I also take a high potency vitamin drink. I have celiac disease too, so have absorption issues. It's a constant battle and very time consuming with all the various issues we have!

Karen

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Thanks to all of you for your responses. I have been checked for just about everything, colitis included. The doctors have gotten together and decided to try another round of antibiotics - an "older" drug this time - to see if that will do it. I don't know; we'll see. Keeping my fingers crossed.

 

April, I have the same incontinent problems, so I definitely sympathize on that end (no pun intended). Biofeedback would not work for me either, so...

 

Sue, I will email you to find out what you take. I have not had luck with any of the OTC's that I have tried so far. But maybe it is something I haven't tried. I am definitely willing to try. I have tried to figure it out on my own but it also doesn't seem to be related to stress or being tired, although I am told that I don't really know when I am stressed or tired (or don't consiously admit it). I wouldn't know how to reduce stress or stop being tired??

 

Kamlesh, I have tried Reglan a couple of different times and different doses but it doesn't seem to have any effect at all, so I no longer take that. I do take Nexium-3/day-which helps with the GERD, but has no effect on anything else.

 

But for now, I guess I will continue on my "one day at a time" path and see where it takes me.

 

My best to everyone.

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Hi All,

 

Something interesting happened. The last post I made about this issue was on the 12th. That was my second day of feeling good. I am now on my tenth!

 

I was very, very ill on the 10th. I did try to go to work, which was not smart, but I tend to feel guilty when I don't go (even though my boss and co-workers are very good about all this). Anyway, I had several episodes of vomiting before I was able to leave and come home. During one of those my body expelled a dark-colored, fist-sized mass and also a smaller walnut size one.

 

I felt a little better, but not much. I went on home, stayed on the couch the rest of the day, with a few more minor episodes. I didn't have anything to eat and not much to drink. About 8pm, all of a sudden the bloating was gone, the pain was gone and almost all the nausea was gone. I was so surprised!!

 

Since then, I have had no bloating, pain or vomiting and only slight nausea on a daily basis. I have sent this news to my doctors for their take on it. I am convinced that mass was the culprit. Maybe not for everything, but at least for the major problems these past several months.

 

Just wanted to share (maybe too much??).

 

Brenda

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No, not too much! We're all having our problems and it's good to know what's happening to others and what they are doing about it!

How amazing it is that you had this mass. It does sound as if that was the culprit. Please keep us posted. I also have digestive problems, but not nearly as bad as yours and they are more or less under control at the moment. I alternate between "almost diarrhea" and "almost constipation," if that makes sense.

I hope you continue to do well. I will be interested to hear what the doctors say.

 

Mary in Texas

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It must be awful to be like that all the time, bloating in itself is very painful. I was told that by dinking warm boiled water with peppermint might help. But I find it doesn't always do the trick for me.

I'm only just starting with GI problems - acid reflux for which I'm taking omezrapole but also seem to burp an awful lot particularly in the mornings or after evening meal, sometimes to the stage I am sick with it. And like many of you swing between diarrhea and constipation. Some days I suffer with slight incontinence & find this very hard to cope with but when mentioned it to my general practitioner he said it was nothing to worry about!

 

I hope you find something that makes your life at little easier Brenda.

 

Take care

 

Jensue

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###### ... sounds way to familiar. I was on Ranitidine and I found them useful for about a month or so and then it was back to the air heaving. Now, I am on Pantoloc. I've only been on them for a week now, but I find that they are causing me to have more gas.

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