Lupus & hernias

[Cal66]

Had to see an Immunologist last week for allergy tests. I took a long list of my food and medications that I have re actions too. Which I have discovered that as well as been lactose intolerant I have also intolerance to anything containing most gluten products. However I mentioned about a swelling that I had been told was because of my hiatus hernia. The swelling turned out to be an unbillic hernia, that's all need. Why do I have to be so greedy? When I asked about surgery I have been told that No one will operate because of my health isn't strong enough, is anybody else in the same position?

[lottagelady]

I have 4 abdominal hernias and a colostomy (hernias are due to those surgeries). I don't have Lupus (well not been diagnosed) but do have rashes etc but have been recently diagnosed with Sjogrens Syndrome which took 10 years to show up in a biopsy, but still hasn't shown up in my blood yet, so who knows, could have a whole raft of stuff! I need mesh around my complete abdomen really or there would be no point in doing anything but surgeon suggests I live with it - he says he can get me through the surgery etc despite my co-morbidities (Diabetes, hypertension, overweight, poor mobility etc,) but how would I manage to get through the months of recovery afterwards? I wouldn't - I live alone anyway and even if my daughter was here to help she wouldn't piss on me if I was on fire, so he is right, I couldn't, it would be a massive surgery with around a week in ITU and I would need to go to London 70 miles away - no longer an option for me really ...... it all sucks!

[Cal66 in reply to lottagelady]

Poor You, it sounds as if you have gone through a lot of op's & possibly more to come. I have worked that my swelling now I know is a hernia was cased by me being sick so much because of my hiatus hernia. I was told by the Immunologist that he doesn't think anyone would operate partly because of my SLE. My heart, hiatus hernia & my allergy to lots of medications, he claimed that my recovery would be slow & risky, but he doesn't have the pain & uncomfortable feeling in certain clothes.

I have done enough moaning it's time to say thank you for your reply ?& hope your surgeon can sort out your hernias

[willowwag]

Just to let you know I have Lupus, Raynards, Epilepsy, etc etc Hiatus hernia and this last year had my umbilical hernia repaired. so I think its very unfair of them not to repair yours if you are in pain. xx hope this helps

[Cal66 in reply to willowwag]

Thank you for your reply.

I hope that you don't mind me asking about the operation, but please can you tell me how did they do the op and how was your recovery? Maybe if I know enough about it, then I can tell the doctors that I know what it entails and how I will deal with it.

[willowwag in reply to Cal66]

Hi Cal, with my Lupus SLE I also have Serositis inflammation of the serous tissues of the body, and the inner lining of the abdomen (peritoneum) and organs within. I suffer excruciating crushing pain which feels like my ribs are crushing inwards when I have a bad flare up of the Serositis. I am very sick (vomiting constantly in a flare with the Serositis and this is what may have caused the umbilical hernia. I found I was wide awake after the opp and could feel everything like if I hadn't been given any pain relief. I was in for 3 days and was very sore, I was a long 6 weeks -8 weeks recovery for me which I was supprised how long it was so painful for, Ive had my gallbladder out and a few opps so I knew what to expect. but this was a long recovery. I you have it done mine was without mesh. give yourself extra time to recovery and its a slow process and now today I still feel the lump and a year one if I'm not carefull it sometimes feels like its coming back out. My mums also had this opp and doesn't have Lupus and she found it was alot more uncomfortable than she imagined. Hope this helps sorry if I have made you wary about it, but I believe in saying the truth and giving people my honest answer if they ask a question. I don't know if they didn't give me enough pain relief after the opp but I was very supprised how I felt everything when they looked in theatre at the dressing it was full of blood so they just stuck another over the top lol! as if to hide it from site. I also flared more with my Lupus while recovering like my body was trying to do to much xx Good luck on you decision just make sure you have lots of rest and someone to look after you and you won't be able to stand up straight for about a week and sitting down, laying down everything is hard work.

[willowwag in reply to willowwag]

I forgot to add I was out of action for about 4 months from my work if this helps.

[Cal66 in reply to willowwag]

Hi

Thank you for your straight and honest answer, I 'm so pleased you have explained everything properly as it is difficult to know if a doctors are just fobbing you off or not.

I think will just put up with the pain for as long as possible. I can only think it was because I have been sick so much over the last 20 years, so much so that the district nurses used to come out to me and give me Cyclizine injections 3 times a day, thankfully I am not as bad now and I am only really sick 1 or 2 times a week, but that is down to my hiatus hernia.

Thank you so much

[willowwag in reply to Cal66]

no problem its always good to have a idea of how you will be afterwards, I also have I hiatus hernia which I'm leaving as long as possible. All the best x