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Is this a reflux or motility issue?


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#1 Amanda Thorpe

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Posted 06 March 2011 - 06:23 PM

Hello All

So I am having digestive issues, well I suppose they were bound to come at some time! After I eat it feels like my esophagus is full of food and I can easily recall it, if you get my drift. Now this can be a good hour or so after eating and I can't decide if it's reflux or motility issues. You see with reflux I never get any pain just the occasional mouth full of acid, awake with a sore throat or get what I can only describe as a soapy taste in the back of my throat.

Any guesses as to whether it's motility or reflux? I see the rheumatologist this month and will obviously discuss this but I was just curious in the meantime.

Oh yeah, on a different subject, how long do ulcers take to heal? I know we're all different but would appreciate a ballpark figure. I keep asking the district nurses and they won't commit to a time frame! ;) I am not looking forward to a summer with bandaged feet! :angry:

Take care.
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#2 Jeannie McClelland

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Posted 06 March 2011 - 07:06 PM

Hi Amanda,

From my all too extensive experience with GI issues, I'd say it could be reflux or motility or both. :lol:

All joking aside (although the above is true), I'd hazard a guess that it's motility, aggravated maybe by a stricture at the lower esophageal sphincter, probably caused by reflux. The symptoms you describe as reflux sound right for reflux, but the feeling of fullness in the esophagus sounds kind of what my GI doctor attributed (and verified with tests) as motility problems.

You're fortunate to be in the UK. We have very little choice in motility medications in the USA unless we are willing to order from pharmacies outside the country. I know many of us do that~ The medication I take (Motilium) does help me and the fundoplication took care of the reflux, so the upper bit of my GI tract is currently pretty happy. I still get strictures and managed to have a tear in the esophageal lining late last year, but it's still a huge improvement over what it all was like before the fundoplication.

Sigh, you'd think I'd manage to lose weight, wouldn't you?

Ulcer healing time? A very long time~ I don't have any experience with scleroderma ulcers, but I do with decubitus ulcers (bed sores) and they seem to take forever. Sorry kiddo, but you aren't ever going to find anyone willing to commit to anything more specific. :(

Warm wishes,
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#3 Lynnie

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Posted 06 March 2011 - 07:10 PM

Hi Amanda

From the ulcer point of view...how long is a piece of string hahaha but generally they can take a few months as they need to heal from the base up, and depending how good the circulation is depends on the overall healing process. Are you on a good ACE inhibitor drug at the moment? I.e nifedipine or doxazocin (I'm on this one and it's excellent)? They say keeping them dry is the best thing, however a doctor friend of mine believes a gentle soak in a weak solution of hydrogen peroxide (sluffs off the dead skin) in warm water once or twice a week and a antibiotic/iodine dressing applied after can aid the healing process. It definitely worked for my mums ulcer. It's more of an old fashioned treatment but an ulcer is an ulcer no matter what decade you're in!! Has your ulcer got pink/red margins? If so it's clean. If it has yellowish margins it's dead tissue and will not granulate and heal quickly. Ask your doctor what he would recommend as the dressing and treatments these days tend to be one treatment will suit all and that's not always the case. He needs to evaluate it every month to keep things on track. That's the RGN in me, been a nurse for 37yrs!! Mention it to your nurse. If you get no joy see your doctor for advice and let him see how it is for himself. He should be checking its progress in any case.

Hope it improves quickly for you.

Hugs and warmth :emoticons-group-hug:
Lynn

#4 Joelf

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Posted 07 March 2011 - 03:21 AM

Hi Amanda,

So sorry to hear about your digestive problems, on top of everything else.

I know exactly what you mean about the full feeling after meals and also the repeating, burning in the throat and that horrible soapy taste in the mouth. I'm not sure if it could be motility problems or just reflux and in my case I'm hoping that it might be the medications I take that causes the reflux, not Sclero. (The eternal optimist at work again! ;) :lol: )

I do hope you can get something to relieve the discomfort; I've found that I try to eat very small portions, which don't over fill my stomach, that helps with the reflux....I might even lose weight, too ( I wish!!)

I've never had the ulcers (thank goodness) so can't advise you about that but they sound really painful and hard to heal and I do hope that you get some relief from them soon and are able to wear your sandals in the summer; if we ever get any decent sun, that is!! :lol:

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#5 judyt

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Posted 07 March 2011 - 03:24 AM

Hi Amanda,

I know just how you feel, having ulcers is the pits, the absolute pits!! I am sorry you have them and that they are taking so long to heal, but that is what they are like. Now I don't know what advice you have been given but I will trot out some of the things I have been told to do and maybe something will help.

Keeping them dry and clean - you know that one.

Being absolutely sure there is no infection the smallest amount of bugs can slow healing. Sometimes I think I am clear of infection and my doctor says no so back on antibiotics and lo and behold I start to heal again.
Keeping your legs above your heart as much as possible. It is hard to do much when you are in a chair with your ankles on a mountain of pillows but you can read, use the phone, use the computer if you have a laptop, peel the veges if you are inventive enough - a plastic tablecloth over your knees and a couple of bowls!!

Last but not least I wear pressure stockings all the time - I have severe vascular dysfunction but even wearing level one or two stockings will probably help unless your problem is caused by arterial dysfunction. You can buy lightish weight pressure stockings or flight sox from the pharmacy and there is also an elasticated tubular bandage the nurses should be able to give you.

Wearing stockings has the added benefit of protecting your legs from knocks to some degree, although I was moving a plastic chair on Saturday and managed to cut my shin.

I would like to think you are seeing the doctor regularly as well as the district nurse. Some nurses are VERY experienced and helpful and others not quite so much.

Good luck with your healing.

Judyt

#6 red

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Posted 07 March 2011 - 08:14 AM

Hi Amanda, I'm sorry your ulcers aren't healing, and to have the GI issues in addition!!

I have dysmotility and have the same feeling of food lumping in my esophagus. I did have a "loose" fundoplication 2 years ago, which decreased the reflux wonderfully, but probably did make it more difficult for food to get into my stomach. Am due for another endoscopy soon and they will check to see if I have any strictures. I stick to softer foods, in smaller amounts, but like Jeannie I still don't lose any weight!! (I guess I just eat more often and I do like my icecream!!)

I sympathize with you completely with the foot ulcers! I hope you are not in too much pain with them. I developed multiple toetip ulcers around a month ago, was put on amlodipine which has definitely helped warm up my feet and decreased the Raynaud's symptoms elsewhere too (fingers and nose). The ulcers are still there, but haven't increased in size, are less painful now, and are starting to harden, not scabbed really but I can feel hardening underneath them, hopefully that's a good sign! I'm being meticulous about keeping my feet dry, covered and warm, even wearing socks during the night. I wonder too how long it will take for them to go away, but I guess I should be grateful that at least the bad pain is gone now.

Right here with you,
Red

#7 Amanda Thorpe

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Posted 07 March 2011 - 09:57 AM

Hello Ladies

Thank you for the replies, maybe I can get in on the battery of tests for motility etc, them I haven't had...yet. Well I suppose after heart failure having taken up last year maybe this is year is for reflux and motility issues...as well as ulcers of course.

Red, I'm curious, when did the bad pain go for you? Unfortunately I'm still waiting to see it out the door! :(

Take care.
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#8 chockers

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Posted 07 March 2011 - 10:38 AM

When I worked I saw lots of ulcers. You need to look after them carefully, but sorry they take a long time to heal.

In the old, they can take a year sometimes and I have seen worse.

Sorry upset you.

Chris

#9 red

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Posted 07 March 2011 - 10:38 AM

Oh Amanda, I'm sorry!

Mine were only mildly painful for the first week as they were developing, then extremely painful for the next week and a half when a couple of them opened up. I started the amlodipine during that first painful week, in addition to Cozaar which I've been taking a few months. The first couple of days of the amlodipine, when my feet were very noticeably warmer, the pain was terrible, and it gradually lessened after that. I think my feet had to have been somewhat numb from the decreased circulation before, the numbness must be gone now (I think I'd like some of the numbness back!). While the ulcers are still very tender, it's nothing like it was when they first opened up. I'm wearing "memory foam" slippers which are very cushiony and comfortable, and trying to stay off my feet as much as possible.

Unfortunately I think I'm having a bit of a side effect from the medicine - my heart rate has bumped up from the 80's to over 100, even though I'm not very active these days. Am also due for a echo followup as I have developed diastolic dysfunction over the past year, hope there is no worsening, probably going to have to have a stress test and/or heart catherization. There's no end to more and more tests the doctors can think up, is there?

Been there, done that with the GI testing :o , good luck to you! Hope your doctors can give you some relief very soon.

Red

#10 Amanda Thorpe

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Posted 07 March 2011 - 03:23 PM

Thanks Red and please make sure you have your echo follow up. I had diastolic dysfunction and remember at the time that my heart rate had increased. According to the Mayo Clinic tachycardia is a heart rate over 100 bpm and if you are experiencing this don't assume it's from the medication, get it checked out.

I am amlodipine for blood pressure so maybe it's helping the ulcers. I have also found that warmer seems to mean more painful so my slippers come on and off all day so I can cool my feet down. Of course this is no doubt the wrong thing to do in the long run but I don't care! :wacko:

Take care and keep posting.
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#11 red

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Posted 08 March 2011 - 08:03 AM

Oh my, Amanda, I guess I will have to call the doctor today and see what they want to do, maybe they can schedule the echo for this week. Out of curiosity, I measured my BP and pulse first thing this morning after I came downstairs (slowly! as I'm very stiff in the mornings) and it was 130/80 with a pulse of 115! Have taken my meds now and am waiting to see what the readings are after an hour or so, and will call and discuss it with my rheumatologist's nurse. I am noticing my rings are getting very tight again in the mornings too, and I know that can be a sign of heart failure, so now I have myself worried.

I tend to rationalize all my symptoms -- maybe the pulse is higher because of increased pain, or the new med...maybe the finger swelling is just the arthritis flaring...maybe I'm just out of shape now that I've been very inactive lately...maybe I just worry too much... I have been stressing because I am having biopsy surgery this Friday on my elbow lumps. My primary says they are just rheumatoid nodules, but when one hears the word biopsy, you just can't altogether get the worry of cancer out of your head.

I suppose it's time to dump all of this on the rheumatologist and let him figure it out, instead of guessing.

Will let you know what the rheumatologist says, but I'm sure it means more tests!

Red

#12 Sandy B

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Posted 10 March 2011 - 08:11 AM

Hi Amanda,

I know exactly what you are going through right now. Had an appointment at the gastro clinic on Tuesday, with the same issues you are experiencing and also a great deal of pain when trying to swallow. I would liken the whole eating experience to trying to swallow gob stoppers, so no fun what so ever!!!

The consultant seems to think it is slow gastric emptying due to the sclerosis (gastroparesis)and I did ask if he thought it might be a stricture and he said no because the endoscopy I had last March showed know signs of one. He wants to perform another endoscopy, but there is about a two month wait at the moment. So until I have this procedure done, I will not know for sure whether it is a motility problem or a stricture.

In the meantime, I am to double the omeprazole and if after a week I am still in a lot of pain, I am to double it again and he is going to write to my general practitioner and ask him to put me on Domperidone, I do have my concerns about this, because of it being banned in the US, so would welcome any comments by anyone using it please. He also said, in his experience, my symptoms are a bit unusual as S.Sc usually starts in the esophagus and works it way south, where as all my gut problems started in the south and have worked there way right through the bowel and are continuing northwards, which shows just how very different we all are.

I find eating small mushy meals is useful and I always have a glass of water to hand, but if I have large mouthfuls of water with food, everything tries to come back up, so I find tiny sips do help the food to slide down. I have a big problem with course meats (mainly red) and dairy foods seems to be a bit of a no no too at the moment.

I would suggest you get referred to a gastro Doctor as soon as possible, before the problem gets much worse. On the ulcer problem, I have no experience of these to date (thank goodness) so can not comment on them, but I hope you find a solution to them soon and some comfort, because from what I have read they are extremely painful.

Take care

Sandy B

#13 Jeannie McClelland

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Posted 10 March 2011 - 09:38 AM

On the subject of Motilum, although it is 'not available' in the USA, most of us here that need it buy it from out of the country. There were only ever 2 motility drugs on the market here: Reglan - which is horribly toxic and is known to cause tardive dyskinesia, amongst other side effects. The Food And Drug Administration (FDA) made them put a black box warning on it and most GI practices are very reluctant to prescribe Reglan. The large group practice I was with sent letters to all of it's patients advising them that if they were on Reglan, they should schedule an appointment with their doctor to discuss 'alternatives'. The other drug was Zelnorm and was only on the market for a short while before being withdrawn entirely! Somewhat amusingly, they offered refunds for any unused portion of a prescription fill and paid to ship the tablets to them. To me that speaks volumes.

I am on Motilium and have been for years. As my GI problems have worsened my doctor has increased my dosage from 10mg 4 times a day to 30mg 4 times a day. I've had no adverse effects. My 'GI Guy' is a specialist in autoimmune GI disorders and has moved to the Center of Excellence where all but my Pulmonary Hypertension specialist are at - I trust him completely. He is the one who gave me the web address of the place where I order the drug.

Motilium is available without a prescription in many places and easily available with prescription in most of the rest of the world. What you need to understand is the licensing process and the money involved in getting a drug to market and then profits once marketed here in the USA. Our FDA system is known to be both flawed and not uninfluenced by the major drug companies (in my opinion). Medications are big money makers here.

Hope this helps,
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#14 Amanda Thorpe

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Posted 10 March 2011 - 06:12 PM

Hello Judy

I initially found motilium of no help and was given metaclopramide (Reglan). However I don't intend to take it any longer having read the side effects and think I'll give motilium another go. I start with a new general practitioner next month and will discuss it then. I'm not with my rheumatologist now until June so I am hoping for good things from the new general practitioner! It's gonna be the year of GI issues!

Take care.
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#15 lizzie

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Posted 10 March 2011 - 06:26 PM

Sandy, the gastro prescribed Domperidone at a dose of 10mg up to 3x a times a day, although the main purpose was to take it a night time to help control reflux during the night. I have been taking it for over a year and have had no problems whatsoever and have found it works well for me. As well as helping with the reflux , it has reduced the amount of bloating I experience.

Lizzie

#16 Sacha

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Posted 12 April 2011 - 03:34 PM

Hi Amanda,

I just put an updated post on as I haven't been on for a while but when I saw this thought I should comment.

Katie was suffering from fullness and a strange taste in her mouth, especially in the morning. She was also getting pain in her chest but this was only after a couple of months of not feeling right. As she is only 8 it was hard for her to explain all her symptoms to me. But.... when she had a routine chest xray they were shocked to see that her oesophagus was very dilated. After 10 weeks with a nasel gastric tube and a soft food diet alongside an upped dose of steroid she is now recovering.

They did say that her muscles in her oesophagus wern't working properly and that gravity was doing the job. Maybe you could try a soft food diet and see if that helps. I would like to say that at one point we were talking about having a feeding tube in her tummy as she was so bad but to see her now you would not believe it! She is almost eating everything besides bread. She even had half a doughnut the other day ( what things we get excited over).

Hope this helps, Sacha

#17 Amanda Thorpe

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Posted 16 April 2011 - 04:39 PM

Hello Sacha

Thank you for the reply and how wonderful that Katie is doing much better! Yes here in the weird 'n' wacky world of scleroderma we get excited about the strangest things!

Take care and keep posting.
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