Gastro intestinal problems

[77lindy]

Hi all,

I was diagnosed in 2006 with diffuse scleroderma, which progressed at an alarming rate. So in 2011 after being on many medications it was still very aggressive and I was offered to go on a clinical trial for 2 years. Fantastic result , before the trial I was virtually in a wheelchair 24-7. And by the end of the trial I was vastly improved making the wheelchair redundant. Now nearly 2 years on things are going backwards.

I would like to know if anyone suffers from sickness. Mine started about 3 years ago and only happened occasionally but has now escalated. In the last month I have been violently sick 3 times now. My tummy is blown up like a balloon and prior to being sick I can only describe the feeling of there being a blockage. I am then sick many times and following the sickness I have the runs which seem to continue until I am totally empty , it can be up to 3 days before I feel well enough to eat again.

Could anyone tell me if this might be scleroderma related .

Many thanks Lindy. X

[sylviagreenhalgh]

have had similar problems and an abdo scan showed I have gallstones so will need an op. good luck meanwhile follow a gallstones diet- you can download it from the net and I find this helps- no more cream cakes etc !! good luck !!Sylvia

[77lindy in reply to sylviagreenhalgh]

Thanks for your reply Sylvia , I did suspect gallstones may be a possibility. Will have to get checked out. X

[Fifi_coren]

Hiya, i'm no expert on this and my dad hasn't officially been diagnosed yet but please take the following as the truth and seek to get you self some answers ASAP. (Currently awaiting diagnosis for scleroderma and has already been diagnosed myopathy on the bowel)

My dad has been suffering vomiting, heartburn and reflux on and off for past few years & it got progressively worse. Lots of complications and too long a story to go in detail about on here but in June this year was admitted to a&e as he couldn't stop being sick. Over the course of 24hours of constant bile like sickness it became black, almost tar like an smelt very bad. He was in hospital at the time & Drs was none the wiser as to what was goin on. Stomach became very distended representing a pregnancy at full term.. He was in a lot of pain and became dillusional. After being left like this for 4 days he suddenly became critically ill. We was told he wouldn't make it but they had to operate to find out what was happening. Turned out that his bowel at some point had stopped working and resulted in a blockage. How they missed it I have no idea.. but they did and as a result it nearly killed him. 4 months on an he is progressing but still in hospital and fitted with a stoma. Due to the length of time the blockage went Un noticed his stomach ruptured and array of complications came after.

I wish u the best of luck with finding out what's wrong but I urge u to trust ur body. If its telling u that something isn't right, please don't wait to find out. Symptoms can come in any order and complications of the bowel can come at any point or never even be present at all.

Better to be safe than sorry.

Best wishes

Fiona x

[Christianna in reply to Fifi_coren]

I really appreciate your message, Fiona...I do trust my body and when a few doctors said they could not find anything I knew, I totally knew my body was ill and went to 4 specialists finding one who sent my lab to the Mayo Clinic and did indeed discover the source of my ongoing severe digestive issues, weakness, dizziness, headaches, diarrhea, etc...listen to your body...It knows.

[77lindy]

Hi Fiona. Thank you so much for your reply. I am sorry to hear about your dad and hope he is on the mend.

Since putting up my post I have been to see my gp who has given me sachets of laxido to make me go. She believes I do have a blockage and have to take the sachets for a few weeks, after which I go back to normal and see if it reoccurs if it does I will have to go for investigations. I hope the sachets will do the job and there are no complications. I will let you know the outcome . Once again thank you Lindy. X

[Fifi_coren]

Hi Lindy, i'm so glad you replied. You've been playing on my mind. I'm ever so glad you visited your GP and I hope the laxido relieves your symptoms. If however you find it returns or doesn't completely subside then pop back and request to be reffered to a gastrointestinal specialist. The reason I advise this is that for years they prescribed similar medication along with reflux meds fory dad. It worked temporarily and for a while it would ease his symptoms but it always returned. Sometimes would be weeks apart other times months.

If indeed my dad does has scleroderma (which specialists at Salford intestinal failure unit highly suspect) then this would explain the continued suffering.

Due to potentially having this disease for a long time without it being recognised this could explain why the medical treatment was never a permanent fix as the disease would have been continuing to damage his intestines resulting in the blockages.

I know it sounds like stating the obvious but I am all too aware that there are ever more cases where our under pressure NHS GP's fail to come to obvious conclusions in favour of common ones. There is not a lot of knowledge about scleroderma especially among general practitioners so even if you feel uncomfortable by stating what would seem the obvious to your GP just be mindful to remind them of scleroderma symptoms and say you have concerns and would like it ruled out. They would be doing you an injustice if they did not investigate it under your current medical diagnosis.

Prayers and thoughts going out to you Lindy, I truly hope it is nothing serious but where our health is concerned I think it's so extremely important to keep our own diaries and seek knowledge and advice from more than one medical professional especially when health problems are persistent and unexplained.

Even the specialist doctors have now admitted that had it not been for my research and persistence in regards to my dad's health and the care he was recieving then he wouldn't be here today.

Please keep us posted if your able to. I'd love to hear the good news that you're recoving from your current symptoms.

May god bless you with improved health and at the least some answers as to what's going on xx

Warmest regards

Fiona xx

[77lindy]

Thank you Fiona, how kind of you I have never spoken to someone with such empathy since my diagnosis. I do feel that no one understands as it is such a rare condition and when I do talk about how I am feeling I tend to think that they feel I am exaggerating about my pain and fears. But having said that I am a strong fighting person and try to keep my chin up.

In a way I hope your dad does not have scleroderma as it attacks you from all angles. I have been lucky in getting a quick diagnosis. My condition was accelerating at an alarming rate and have been lucky to go on a clinical trial for two years which has seen me improve ten fold. But now after 9 months since it ended things are changing yet again. You tend to pick yourself up brush yourself down and carry on.

So dear Fiona keep fighting for your dad's diagnosis don't be fobbed off. I wish you and your dad all the best and hope things improve. Will keep you posted and please let me know how your dad gets on. Kindest regards Lindy x

[Christianna]

For the past year, I was in the hospital 4x for unstoppable diarrhea and dehydration. Cause unknown until this past week...new doctor show I have extremely low iron in my blood which causes all kinds of digestive troubles as well...I was "blaming" all on my autoimmune disease which most likely was not the cause...just an idea...for me, I am trying diet, exercise and also going gluten free for two months and am expected to see a major difference...will let you know...