Gut affected by Scleroderma

[simon_m]

Hi, My wife was diagnosed with Scleroderma in May 2019 and have been in and out of hospital since. In July, she had renal failure and was admitted to Intensive Care shortly after her first dialysis with all her major organs failing. The condition has affected her guts severely and is unable to drink or eat. She is constantly retching and vomiting bile which is getting worse. It would be great to hear from anyone with similar symptoms and possible treatments.

[MissusTee]

She needs to be checked for gastroparesis and also for SIBO, as there are medications that can help with this. Also I hope that her pancreas has been tested, as This can cause problems with scleroderma. I think that it's also worth her having an ultrasound on her gallbladder as this can make you ill.

[positivedaybyday]

Hi Simon,

So sorry to hear your shocking news & I keep my fingers crossed for your wife. It must be a nightmare for you both.

I was diagnosed in 2017 with scleroderma & had gut issues though not as severe as your wife's. I saw a gastroenterologist who found I had a clump of blood cells bleeding inside my stomach. They performed Argon Therapy & tablets to help with the bad reflux. I had difficulty swallowing & eating & had to use a soft food diet for a while. I presume your wife is under a Rheumatologist who specialises in Scleroderma, if not you need one urgently!

I was given lots of leaflets explaining how this horrible disease affects the body. These really helped family & friends & covered areas you mention.

Each individual is affected in different ways & also different levels of severity.

We're all hear for you both through these terrible times so ask as many questions as you like. The more knowledge you build up the better you will be able to adjust & cope.

Big Hugs xxx

[overnighthearingloss]

I had a scleroderma renal crisis about 10 years ago and was told I was a candidate for dialysis 10 years later I still have some function in my kidneys and luckily I managed to escape dialysis.

I won't lie. It's very difficult to eat properly at this time. You may want to encourage her to eat certain things and she may be refusing.

I was on my own at this time so didn't have to face the prospect of family meals. I think this was useful for me as there were so many foods I would avoid.

Hopefully she likes veggies as at the time I found them much more digestable.

Possibly making her lots of soups might be a starting point. I went off of caffeine for ages so tea and coffee.

Let her make choices. It's difficult I know but she will have a better idea what she can cope with. You will probably be eating foods she can't manage.

If she is put on dialysis the hospital team will provide some info as there are strict limits to certain foods.

Dialysis isn't always long-term but I have met people who have managed with dialysis for many years.

Things are very uncertain right now and may change by the day or week. My personal belief is that in order to get the most nutrition into her from small amounts buy organic if you can afford to do so. Cook from fresh rather than relying on pre produced goods. It's all to ensure she gets the greatest bang for her buck.

The bile issues are made worse if she is attempting to eat meals with a high fat content. If she listens to her body she will begin to know what foods she can tolerate.

[overnighthearingloss in reply to overnighthearingloss]

I had a major gut bleed last year and they had me on liquids for quite a while before introducing soft vegetables and then a more regular diet later on. This allows the greatest prospect of healing

[simon_m]

Thank you all for the responses and support. It is good to know that there are people who one can draw energy and support from in such trying and desperate times. My wife is being treated for Scleroderma at a hospital using immunosuppressant drug. Her gut is very sensitive and would not accept any food or drink. She is being kept alive using a TPN method of feeding which is given into a vein, bypassing the gut. Most of her medication is given to her by IV.

I understand that the drug she is being given for scleroderma suppresses the immune system to prevent further damages and not necessarily treat the damages that have already been done. I am told that not much can be done for her gut and doctors have adopted a “wait and see” approach. We are getting desperate as the retching and vomiting is getting worse and she has lost a bit of weight. Her normal weight when healthy was about 64 kg and it is now 49.5 kg.

We have heard of a drug called Prucaloptide (Resolor) which has helped some patients with gastrointestinal problems. We are told that this doesn’t work if a patient is on dialysis. We have also heard a new approach of treatment using microbial plantation. Again, we are told that this is not appropriate. Hence, the reason why we are seeking information from anyone who may have had similar experience.

[overnighthearingloss in reply to simon_m]

I don't know the drugs you are referring to so can't comment on them.

I think the most important thing right now is that everyone including your wife retains hope. She has to believe she can get past this awful period.

Providing you can still retain hope and a will to continue its possible to overturn really bleak situations. The weight can be regained if everything else is kept on track.

You will likely be more aware of her current situation than she is. She will be resting a lot and possibly things are not quite as vivid for her as they are for you.

Look for small wins which will hopefully build into bigger wins. That's the way it is. Work with small attainable goals.

Sending hope and good wishes to you all. Try to ensure that you yourself are looking after yourself properly as well.

It might be worth posting on the kidney forum as well as there may be someone with more personal advice re dialysis.

[simon_m in reply to overnighthearingloss]

Thank you so much for taking your time to respond. Your advice is sound and very helpful, It has been very challenging, but with we are coping well with the support and advice we are getting. Thanks again.

[overnighthearingloss in reply to simon_m]

I am so glad that you have been coping. I was thinking about you both.

As I said previously you need small attainable goals but If she is still in hospital you will also see dips from time to time. It's not easy when you are covered in wires and monitors. It's not easy for you either with the challenge of keeping life together and all the hospital visits.

Her moods may change but that doesn't make recovery less likely. Just that you have to work hard to stay on track.

If/when she gets home, your routines will have to allow for her to eat a reduced palate and to be able to rest.

It's easy to think that everything is totally normal again with a return home when the reality is that a potentially long period of convalescing is required.

Best wishes coming your way

[simon_m]

My beloved wife sadly passed away 6 months after being diagnosed with Scleroderma. We are slowly coming to terms with her loss although this is made difficult by the fact that we have so many unanswered questions. I thank all who supported us during this difficult time be it in answering our questions or expressed compassion. God bless you.

Regards,

Simon