Please help me find a diagnosis

[Alisu]

This started back in September last year when, after eating a quantity of nuts my friend experienced a form of colic, a cold burning moving from the top of her stomach down through her digestive tract in waves which completely debilitated her. Eventually it moved down into her pelvis and the backs of her legs, stopping her from walking.  A&E sent her home with no help or ideas. Following this event she developed uti symptoms which were treated with a total of four courses of antibiotics over a 6 week period before being diagnosed with interstatial cystitis.  At the end of these courses she had developed pain, cramps and bloating in her guts. She was then found to have c diff for which she was given another course of antibiotics, vancomycin, and her gut symptoms got progressively worse. Various specialists which she saw over the next few months took foods out of her diet to 'help', however she started to lose weight and ended up losing 20kg over two months, she has been around 42-46kg since February, she is 178cm. When we tried to reintroduce foods back into her diet she had various reactions similar to the original colic she suffered, and more worryingly she has a major multi-day recurring 'colic' every month. As we have followed closely the foods she has been managing (mainly swede and potato) and the foods we have tried to reintroduce, we have seen that she is experiencing ever increasing debilitating responses to salicylates and there is clearly a hormonal element which we do not understand.

She is now experiencing ever more regular 'colic' events with no explanation. Specialists we have seen prior to her being hospitalised have diagnosed leaky gut, gut dysbiosis and histamine intolerance as well the interstItial cystitis.

She is currently hospitalised in Uk, receiving parenteral nutrition but continues to struggle with intolerances which affect her condition and ability to recover her diet. We believe she is currently suffering with salicylate sensitivity/intolerance and a histamine linked issue, although we have no way to test this as the hospital have completed all standard tests and finding nothing practically wrong with the gut have diagnosed a hypersensitive gut and a gut/brain issue.

The gastro team here at the hospital have now decided that they will start reducing the TPN from Monday with a view to stopping it next Monday. They are expecting her to somehow magically suddenly be able to eat or ingest the 1700 calories that she will lose from TPN despite us having spent the last 6 months trying and failing to reintroduce foods to her diet. The stress this is putting Olga under is immense and I do not know if she will be able to deal with it in her current weakened state. Since being in the hospital she has only lost more weight and it is only over the last few days that they have finally increased the calories to 1700. Before the doctors announced they were going to remove the TPN we had just spoken to the pharmacist about trying this week to add the lipids back in to it. Unfortunately when we first tried the feed with the lipids (olive oil and soybean oil) they had an extremely negative effect on her. We are unsure if it was the interstatial cystitis or the salicylates which caused the problem but we had said that in order to keep moving things forwards we were going to try putting the soybean oil back in and see if she could tolerate this. This all now seems a mute point with the decision that they have now made.

We do not know what we can do now. Last weekend she went through another of the 'monthly' colics, but she then continued into having another colic in the week and is currently experiencing the sensations in the gut which associates with the start of yet another colic. She is getting worse but no one is interested. When the doctors saw her in the week when she was paralysed from the colic, they referred to it as maybe just lethargy

Please help us with a referral, someone that can save my friend.