Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Horrible Reflux Attacks - All of the Time with no Reason


  • Please log in to reply
10 replies to this topic

#1 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 09 June 2011 - 05:36 PM

I haven't been on here for quite a while and I apologize. It is this site that brought me a wealth of information when I was first diagnosed and also brought me so much information and everyone is always so supportive and caring.

My scleroderma has really amped up since October. Last October I asked my rheumatologist if I could come and see him every 6 months since I was "stable". Well that blew up in my face BIG, BIG, BIG time. After that time period every simple test blindsided me with bad news and the disease is in such a horrible flare right now. I now have the definitive diagnosis of Pulmonary Fibrosis, and we all know what that means. Cellcept though seems to be working and slowing it down so I hope that it continues to work. I have tried all of the other drugs and this is the last one so when it quits working unless something new is developed then I will be at the disease's mercy as far as my lungs are concerned.

The diseases (I have 7 different autoimmune diseases) have manifested horrific pain in my legs and lower back. Through x-rays it was found that my spine is degenerating as well as disc disease. I have osteoarthritis and osteoporosis. I have had a spinal stimulator put in to help with the pain in my legs and it is a lifesaver. I still have breakthrough pain with it so I can't imagine if I didn't have it in. I have really bad fibromyalgia on top of it and that doesn't help with the pain all over that I have in addition to the horrific pain in the legs.

Like many of you I have such terrible fatigue with this disease. At the strike of noon each day it's like I hit a brick wall and my body just gives in and I am so tired I can't hardly stay awake. With the reflux issue that I will be talking about this is only worse due to getting NO sleep at night on top of it.

The reason for this post is that the disease has decided to really manifest itself in my digestive system. I was in the hospital for a week in April due to my stomach motility being gone and it was full of bile and this was the reason for my having reflux attacks so bad that after 11, yes 11 GI cocktails they didn't work and I ended up in the ER twice in one day and then hospitalized. The doctors did an endoscope and found that not only is the motility completely gone from my esophagus but it's also gone in my stomach. So now food isn't moving down my intestines. At the time I was put in the hospital my bowels hadn't moved for quite a few days too so I was completely backed up. So after the hospital stay I went to see my gastroenterologist and he informed me that it was his opinion that it didn't make any sense to do any further testing as there wasn't anything they could do. He said the disease would continue to move down my digestive system and that I would have to at some time go to soft foods; then pureed food; and then a feeding tube. This was devastating news.

So I then had my appointment with my team of doctors at the University. The PFT was worse and that was when I was given the news that I now had the Pulmonary Fibrosis with the disease. The Cellcept is working and hopefully it will continue to as when it does we all know what that means. The rheumatologist then said he didn't agree with my gastro doctor in that he thinks I should be having a fundoloplication tried. The University is getting a new gastro doctor in August and his specialty is motility issues. So he wants me to see him when he's there in August and they will do the motility testing and then see about doing the surgery. He said the worst thing is that the surgery would have to be "undone" if it didn't work.

So here is my dilemma and my question to others who suffer with this. I am now adhering to ALL of the restrictions so as to try and help any motility issues. This means the usual.......no chocolate; nothing hot or anything to trigger it; nothing in my mouth after 6pm; no pop or any carbonated beverage; no pain medication other than the pain medication pain patch that I wear but I am trying to not take the orals); and my bed is elevated to where I am sitting up. When I have an all-out reflux attack it is like being burned alive from the inside/out. It burns through my whole chest up to my neck. It is excruciating pain and I am almost jumping up and down and tears roll down my eyes it is so bad. So what they have me do is drink the GI Cocktail (lidocaine with maalox) to numb my insides. I am able to do 3 of these and when 3 do not work then it is off to the ER for them to do a Protonix Iv and then zofran and a pain killer. What is happening now is the bile is backing up my esophagus and it's happening ALL OF THE TIME. I am having attacks during the day and even at 5:30am. They are brought upon by nothing and not triggered by anything I have done. It is very frustrating. This is no way to live and I mean that from the bottom of my heart. Two nights ago I literally just cried and actually wrote a note. I am blessed in that my religious associates are calling me all of the time to check on me. I try to talk to my husband about this as he is the one who sees me suffering but even he doesn't understand. He is suffering his own issues with what this disease is doing to me and him having to watch me suffer every day. I am at a loss on what to do. Does anyone have any insight or advice?

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 09 June 2011 - 07:17 PM

Hi Peggy,

I'm terribly sorry for how you are doing and how much you are suffering now. The first thing I'd like to do is give you a great bit warm, comforting hug.
:emoticon-hug:

What do you have to lose by trying the fundoplication surgery? My husband had one years ago and he's never had even a whit of heartburn since. In fact he had it at the same center you are going to, I think. Just sign up for it right away. The only thing you'd have to lose is heartburn, and it was a very easy surgery and recuperation for my husband. It would be more complicated for you due to scleroderma but still, can you imagine being free of the heartburn? It's a proven surgery and certainly worth the try!

Next, about your bed, as I understand it, we are only supposed to elevate our bed about 4-8" at the head of the bed. Such as putting one or two bricks under the head of the bed, and not enough so that we feel like we are either falling off OR sitting up. When we are sitting, there is enormous pressure that pushes UP on our stomach and forces the acid UP our esophagus. So first of all, try to remedy the bed situation right away and to be on the safe side, check with your doctor about the degree of elevation they recommend for you. Then, when you awaken with heartburn anyway in the night, try to stand up instead of sitting down, again, because of the pressure thing. As vertical as you can be, puts gravity (at least) in your favor.

But really, first of all, why not just pick up the phone and sign up for a Nissen fundoplication? I'm pretty sure that it would likely put you out of most (perhaps even all) of your heartburn misery. Plus there is a relationship between heartburn and pulmonary fibrosis so by taking care of the heartburn, you might also quell the progression of the fibrosis. They wouldn't let my husband even get listed for a lung transplant unless he had a Nissen first, because of the dire outcomes of lung transplants in people with heartburn.

Is that enough food for thought for the day?
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Peggy

Peggy

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 09 June 2011 - 09:40 PM

Wow, I never knew about the degree of elevation for the bed. I always thought the higher we are the better it is to keep the heartburn at bay. What I have is a wedge that I use and then I put pillows on top of that. Lately I have been trying to get up as high as I can and have been sleeping in the recliner after the attacks hit. I would be remiss if I didn't admit that I am as beaten down. I have tried since I was first diagnosed and through all of the pitfalls since diagnosis and further diseases that were diagnosed to be positive and have a fighting spirit. I have been quite strong through it all and have tried to be as "normal" as possible. Almost too much as far as my kids are concerned in that I basically hid from them just how bad I was. Well since last year that has gone out of the window and I no longer sugar coat it for them. Now I couldn't even if I tried. Since April though the escalation of the disease and what it has done to my body and spirit has left me felt like a beaten down dog. The last few weeks have been utter misery and I sincerely mean that. Like I said before, this is no way of life for anyone. To constantly have your insides burn with such intensity and pain; to not eat anything because you can't get it down; to operate on no sleep due to the pain and the discomfort is horrible.

So I will take your advise and call his assistant tomorrow and ask that I be scheduled for whatever is necessary to get this ball rolling ASAP. I will not mince any words I can tell you that. I just had a simple piece of toast and can already feel the acid juices rising.

Thank you for your information on the elevation. Why is it they don't tell us this stuff?!

Blessings to you!

Hugs,
Peggy

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 10 June 2011 - 06:48 AM

Hi Peggy,

I am sorry to read about all the pain and distress you're suffering; the acid reflux sounds dreadful and I can understand the despair you must be feeling.

I do have Pulmonary Fibrosis, but not, thankfully, the gut involvement you're describing. However, Shelley's recommendation of the Nissen Fundoplication sounds a very positive idea for you. I'm so pleased to hear that you intend to organise this operation and sincerely hope it's really successful for you.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#5 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 10 June 2011 - 11:15 AM

Hi Peggy,

My heart goes out to you, with all of this going on.

Thank you for letting us know (only wish you were doing much better than you are, however :crying: ).

I went (by ambulance), to the ER last fall with the pain you described, and I can honestly say that it IS terrible!

I so hope you are able to have the fundoplication and SOON!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 Chopper

Chopper

    Silver Member

  • Members
  • PipPipPipPip
  • 124 posts

Posted 10 June 2011 - 12:43 PM

My heart aches for you!!! You've been given some good advice, and I hope seeking out that procedure gives you some much needed relief!

I have gastroparesis and I try to follow the gastroparesis diet closely too. Does chocolate and hot drinks bother you or did you read that they might? I realize everyone with gastroparesis is different, but personally neither of those bother me, that I can tell, however I only drink 1 or 2 cups of hot 'herbal' tea a day, and when I eat chocolate it's dark and in small doses. For example, 1 or 2 individually wrapped pieces of dark chocolate a day, or I'll put chocolate chips in my pumpkin muffins. To help get my chocolate fix, I also make chocolate muffins with cocoa that contain pureed beets (you'd never know beets were in there!). Any way to cram nutrition into easy-to-digest muffins! I can't live without that staple in my life! You can even pour milk over one to help if needed. I think the grocery store has a hard time keeping muffin papers in stock for me! As far as the constipation, I take magnesium every day without fail which greatly helps me. Before I started taking it, I was going every 3-5 days! Now it's usually every day, but if not, then 2 days.

I nearly forgot to mention, a gentle walk after each meal, if you can handle it, is very helpful because in this case gravity is our friend. Not so much on our aging faces (lol), but our GI system LOVES gravity and gentle motion!



Keep us posted!
Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#7 docmartenmom

docmartenmom

    Senior Bronze Member

  • Members
  • PipPipPip
  • 57 posts
  • Location:NY

Posted 14 June 2011 - 07:35 AM

Aww good luck Peggy! I have Barrett's and my symptoms are the same as yours - I know what you're going through. (((hugs))) and please keep us posted ~ Lori

#8 Chopper

Chopper

    Silver Member

  • Members
  • PipPipPipPip
  • 124 posts

Posted 15 June 2011 - 08:03 AM

I have to laugh at myself because there I was asking you if chocolate bothers you and then saying it doesn't bother me. However, I usually eat it in small doses. While shopping yesterday I couldn't resist the urge to eat a whole chocolate/caramel bar, and guess what, stomach issues all evening! Guess I have to eat my words, and hopefully they won't cause a gastroparesis attack!

How have you been feeling?
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#9 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 15 June 2011 - 02:32 PM

Hi Peggy

I'm so sorry to hear that you are having such a hard time. I agree, hopefully, you can get the fundoplication soon and it will sort at least some of this out for you. Has the bed situation helped any with Shelley's suggestion of lowering it some so you can at least get a little sleep? Any updates for us on how you are feeling this week? Take care.
Sending good wishes your way!

#10 Peggy

Peggy

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 21 June 2011 - 08:51 PM

Well unfortunately there isn't any change in this whole reflux issue. I am constantly having attacks and my rheumatologist has prescribed an antibiotic in case there is some bacterial overgrowth going on. I am usually up all night and this night-time zombie thing is getting so old. I am so tired and it is so wearing on a person. I went to run a short errand uptown on Monday morning, which is only about 10-12 blocks and I can honestly say that there is no way I could possibly drive anywhere longer. I was having a hard time concentrating for even that short distance. It is so embarrassing if I'm talking to my sister on the phone and she is talking about something for a little while I am almost nodding off! So I am hoping I will hear back from my doctor by next week as he is gone. If it means making another trip down to the Cities for some motility testing I'm OK with that as I just don't think I can wait until August to do all of this.

Here's another thing too that is soooo frustrating.......I am so bloated and so puffy from being in this flare that all of my pants are even tight. Now I know I can't possibly have gained weight as I'm not eating enough at all. So now I guess I'll have to see if there is one of the medications I'm taking that is causing some weight gain or if it's from my body being bloated and puffy and swollen all over just like it was when the disease started.

I know I have to remind myself that it could be soooo much worse. There are so many out there that suffer so much worse than I do and they are such heroes about it. I know alot of you deal with oxygen issues and with raynauds issues that are so painful and make daily life such a struggle. So who am I to complain when I know there are so many out there with such hardships that compared to what I have it makes it look pretty trivial.

Warm hugs.

Peggy

#11 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 22 June 2011 - 12:20 PM

Hello Peggy

Yep there are plenty worse off, for example I have a friend who is dying from scleroderma and that's about as bad as it gets. It certainly helps to have a view of the "big picture" but it doesn't change the fact that you are struggling everyday with an issue that is affecting your of quality of life. However bad it is for others we still have to live in our own bodies and with all that comes with that.

The good news for you is that a surgical procedure may well solve your reflux attacks so bear in mind there is an end in sight.

I can't help with the puffy/bloating issue because I have rather large abdomen myself these days! Mind you in my case it could well be fat. :lol:
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)