Anyone had similar experience?

[Char892]

Was just wondering if anyone has had a similar experience as now feeling like I'm somewhat alone!!!

I started having symptoms last year (January and February)- some which were gastro and some which were not. Anyway, they never got to the bottom of it and things were left 'undiagnosed'. I got a few flare up of symptoms throughout the rest of the year (April, August and then October).

I then went to see a Rheumatologist at the beginning of March this year as a follow-up from last year. This was where the disease sine scleroderma was mentioned and she referred me to a gastroenterologist.

As it happened, at the end of March this year (23rd) I developed crippling pains on the right side of my abdomen as well as being sick a lot and passing blood and mucus in my stools I also had a lot of bloating. I got admitted into hospital for a suspected appendicitis but after numerous blood tests and an ultrasound they decided that my appendix was healthy. I then had an MRI which showed thickening in my ileum and the cecum with the lymph nodes swollen.

They referred me to a specialist who decided that, because I am unable to eat without vomiting (this has lasted up to 5 hours) and the only liquid I can tolerate is water, a colonscopy and an endoscopy would be needed.

I had both done which found nothing but we are awaiting the biopsy results. The specialist then said to have an ultrasound which showed that the lymph nodes are still swollen.

Also I have been unable to eat for what is almost 4 weeks now and its getting extremely frustrating- I understand that these things take a long time to diagnose but I found out yesterday that they are doing another MRI scan in 3 weeks time which in my opinion is pointless considering I've already had one which has found a problem!!!


I was wondering if this sounds like anyone else?- Any advice or suggestions are welcome!

Ive tried every type of food- but nothing seems to stay down at all!!!

 

[UnXmas]

I assume you can keep some liquids besides water down now, since you wouldn't last three weeks if you couldn't, so I would ask your doctors for supplements. Brands like Ensure and Fortisip make milkshake-style liquid supplements that provide all the nutrition you need (though they can also be used along side food if you are eating but your diet isn't providing adequate calories or nutrients).

Is your next MRI being ordered by a different doctor than your first one? Often doctors like to have their own set of test results, especially if past ones were done by a different hospital. Also things can change a lot in a few weeks, so I wouldn't turn down an MRI just because you're already had one. It may be a waste of time, and doctors don't always go about finding a diagnosis in the most efficient ways. However, it is a good sign that they are still recognising something is wrong with you despite the negative scopes. There have been many posts on this forum by people who have been dismissed by doctors when initial tests come back negative, despite their symptoms persisting. The negative scopes make it less likely that Crohn's is causing your problems, and it sounds like you have something quite complicated going on, but it also sounds like your doctors have recognised this. What specialsts are you seeing currently? Have they given you anything for symptom management, e.g. anti-nausea medication? It may be a good idea to ask for this along with food supplements to try to make things easier as you're going through the process of diagnosis.

 

[Char892]

Hi UnXmas,

Thanks for your reply!

I'm drinking milkshakes but will be sick afterwards so around 50% of it stays down. We have tried 3 anti sickness (one is used for chemotherapy patients). Currently I am seeing a rheumatologist and under a few gastroenterologists (and the hospital is able to test for scleroderma but at the moment they are refusing)

I forgot to initially say but my father suffered this and the thickening shown on the MRI is the exact place he had to have removed after it severely twisted and he needed blood transfusions and was on ICU for weeks. His was suspecting Crohns but like me everything came back negative.

 

[UnXmas]

I can see why you're worried given what happened with your father. I don't know much about scleroderma other than that some cases are much more serious than others and that it can affect many parts of the body - does it cause the same digestive problems that Crohn's does? What does the test for it involve? Keep pushing all your doctors for tests and help with your symptoms.

Have you heard of or tried the BRAT diet? If you haven't it might help if the milkshakes aren't going down well. It stands for Bananas Rice Applesauce Toast, which is all you eat. The rice and toast should be white not brown. It's obviously not a nutritionally complete diet, but it's designed to be as bland and easy to digest as possible, and you stick to it just for a short period (several days or so) to try to get your digestive system settled down. You can try adding similar foods like plain crackers, soup, etc. Or have you tried liquids that don't have the fibre and fat content of the milkshakes, like juice and energy/sports drinks?

If you're vomitting that much, you're at risk of dehydration, so don't hesitate to go to the emergency department if you start feeling faint or dizzy. They can give you IV fluids, which is very easy to do and will get round the problem of keeping anything down.

I wish I could offer you more useful help. I have other health problems besides Crohn's and I know how confusing it can get when you're seeing different specialists and have a lot of different symptoms. If you can, try to get your doctors communicating with each other - it can be very difficult to get them to do this, but it can help if they all compare their ideas. I hope you get some answers and treatment very soon.

 

[Char892]

Hi again!
Thanks for taking time to reply

With regards to the Scleroderma, if I have it apparently it is the rare form therefore not every hospital has the facilities to test for it. Luckily, the hospital I am currently under does. I don't know exactly what the tests are because I was firstly told that it can only affect the esophagus but then another surgeon told me it can affect the stomach as well? The rheumatologist has already asked for these tests but at present whilst one consultant is willing to do it another is not (they both work together?!)

I have heard of that diet and have tried all of them foods but nothing is staying down- it is very odd. The only two foods that stay down the most are liquid milkshakes (Complan- it has added vitamins etc) and ice cream!!!. I have tried fruit juices and they do not seem to work either!!! It is so frustrating especially when you really want to eat!

I have been careful to avoid dehydration by continually sipping water as often as I can and that does not seem to come up all the time. When i was admitted when they did the endoscopy and colonscopy they had to put me on IV fluids but as soon as I came out once again the vomiting started. I definitely do not have any eating disorders or anything like that so I know that it is a problem caused by what is happening.

Thank you so much for taking the time to reply- I am hoping that even if there are no answers they will be able to do something about the fact I cannot eat and have not eaten properly in what is now 4 weeks!! Even the nurse was rather surprised!!

 

[UnXmas]

I don't know much about this condition or whether it matches all your symptoms/test results, but reading your post I thought of Cyclical Vomiting Syndrome: http://en.m.wikipedia.org/wiki/Cyclic_vomiting_syndrome