Lack of nutrition, where next?

[sarahfh]

Hi,

I will keep this as short as I can. I'm currently undiagnosed with suspected Crohn's or possibly coeliac (apparently my low IgA could have given a false negative blood test) and very underweight. My BMI works out around 15.3 based on my last weigh in at the hospital. I daren't weigh myself right now because I suspect I will be back around 15.1 and I will have dropped back below 7 stone which at 5ft 7 is not good!

For about a week now I've had awful nausea, to the point on Sunday I was too nauseous to even drink, as well as about 20-30 minutes after eating awful diarrhoea and rumbling and grumbling which is so noisy it's embarrassing. I've also had a bit of an increase in pain. So, on Sunday I went to the out of hours walk in and got some antisickness tablets so I could at least drink, they helped for that but still not enough to really eat. Since Thursday last week I've barely been able to eat, so a week now.

I saw the GP on Tuesday who prescribed more antisickness tablets as out of hours only gave me enough to get through the bank holiday and basically told me to take those and use the fortijuce to stumble through until my gastroenterology follow up on Friday next week (8th of April).

So my question really is how do I get through the next week like this? The GP always says wait and see what gastro say but my gastro is crap and doesn't listen to me at all. Where else do I turn? How many days of barely being able to eat do I have to have before someone actually does something?

Sorry for the long post!

 

[ronroush7]

Can yoiu get s second opinion? Your doctors may want to put you on TPN.

 

[Robertp]

Try some Vitamin juices to get that nutrients.

 

[DEmberton]

When i was quite ill with a stricture (gurgling might suggest a stricture) I turned around the weight loss by having Ensure in the morning and a Complan shake in the evening. Ensure you can get on prescription but I just bought some off the internet. Complan you can buy in the supermarket. I wish I'd started that earlier but the good old NHS just made me wait months.

Also I found that although I could never face food once I forced myself to eat I felt better.

Good luck.

 

[sarahfh]

Ron, I've seen something like five different doctors already, the GP's tell me to just wait and see what the GI wants to do, the GI doesn't listen at all and said that because I've not lost any more significant amounts of weight since referral she isn't concerned. One of the GP's prescribed me Fortijuce to help but it's not enough to live off.

DEmberton, I'm having the Fortijuce once to twice per day, and the last couple of days I've thankfully managed a little bit more food but still nowhere near a normal amount. In fact I would say it's been about a year since I've been able to eat normal amounts of food. I guess I just don't understand why non of the doctors seem to care that I'm so underweight and struggling.
Now my GI seems to be going down the coeliac route so I think the chances of her helping with the malnutrition are getting slimmer. As much as I'm grateful for the NHS, I do feel rather let down. I'm worried about the long term effects on my body, I'm only 25 and I don't want this all to impact my bone strength or organs when I'm older, I'm already getting a lot of chest pain when doing too much like going up the stairs too fast.

 

[shamrock15]

Please also get some blood work done - explain to your docs the difficulty with stairs. It may indicate anemia. Shortness of breath is common, but it can present differently depending on your fitness (I used to be able to referee ice hockey at a good level despite some pretty severe anemia).

Underweight doesn't seem to bother GI docs. I think it is understood and expected that it will happen. The only time for me (5'9" male) that my weight was a concern was when I dropped to under 130 pounds. Still no significant dietary measures were taken at that time.

If you end up on prednisone that may change as it does normally lead to an increase in appetite.

You haven't indicated any testing as being done right now - an endoscope will get an almost immediate indication on celiac. They will likely need other tests to make a determination on crohn's. In either case, I do hope your issues are resolved shortly.

 

[sarahfh]

Shamrock, I've spoken to my GP and they've run another ECG but no bloods so I will get on that, I do get breathless with the chest pain/tightness too. I may well mention it to the GI as I see her Friday anyway.

I've always been slim but I'm now 5ft 7 and 98lbs/45kg/7stone depending which makes more sense to you, so very underweight now. If I were able to eat well I wouldn't be as concerned but the last 10 days roughly I manage about 2 small slices of toast with honey and a bit of fruit smoothie a day with a Fortijuce or two.

As it's the NHS there is a LOT of waiting between tests. Tomorrow I go for a blood test to see if I have the genes for coeliac and that seems to be the direction the GI is looking now as ESR, CRP, FC etc have all been normal throughout. Colonoscopy showed granular inflammation in TI but nothing in biopsy, colon looked fine but had mild, chronic inflammation on biopsy which was non specific. So god knows what's going on right now. I see the GI Friday so I'm hoping she will book some more tests in so I can get all this sorted. I just want to be well again and have a life outside the bathroom and bedroom again.

 

[ronroush7]

Shamrock, I've spoken to my GP and they've run another ECG but no bloods so I will get on that, I do get breathless with the chest pain/tightness too. I may well mention it to the GI as I see her Friday anyway.

I've always been slim but I'm now 5ft 7 and 98lbs/45kg/7stone depending which makes more sense to you, so very underweight now. If I were able to eat well I wouldn't be as concerned but the last 10 days roughly I manage about 2 small slices of toast with honey and a bit of fruit smoothie a day with a Fortijuce or two.

As it's the NHS there is a LOT of waiting between tests. Tomorrow I go for a blood test to see if I have the genes for coeliac and that seems to be the direction the GI is looking now as ESR, CRP, FC etc have all been normal throughout. Colonoscopy showed granular inflammation in TI but nothing in biopsy, colon looked fine but had mild, chronic inflammation on biopsy which was non specific. So god knows what's going on right now. I see the GI Friday so I'm hoping she will book some more tests in so I can get all this sorted. I just want to be well again and have a life outside the bathroom and bedroom again.

I hope you can get diagnosed and feeling well soon.

 

[Eridon2002]

I'm 5'7" and at my lowest was 97 pounds when I was in the hospital after my resection. Your weight is way too low for your height and your doctors should be concerned. Has the low weight affected your menstruation(this could affect your bonce density)? If so, let them know since it would be more reason for them to take your weight loss seriously.

 

[DEmberton]

My doctors didn't seem concerned about the weight loss (9st, 126 lbs 6 foot male), but I certainly was. Then I was told I needed surgery and suddenly it was "we need to get you in as good a shape as possible for surgery", and had me talk to a dietician and take Ensure. The GI consultant actually suggested "chips and mars bars".

2 months after surgery and I was back to 12st. Now I'm over 13 and could do with losing a bit.

 

[shamrock15]

They recommended that I eat anything I felt I could and keep down. For years I was eating obscene amounts of chocolate daily. I am "down" to two chocolate bars a day! When I was trying to keep my weight on I was literally eating pounds of chocolate a week. Chips were recommended as a way to bulk up stools while getting calories - need to make sure they are lower salt though.

Now that I am in remission, I am back to about 176 healthy pounds regularly on 5'8" frame. That about 13 stone? 14 pounds per stone? This is about where I need to be.