Hi, my name is wendywoo100! I have diverticulitis pain issues.

wendywoo100

Hi my name is Wendy 
I am.recovering from my.second bout of diverticulitis having to go to hospital and take antibiotics through the veins more antibiotics when home.
I feel there is no help or advice out there for us at all? I worked for many years in the nhs and this came and  took my life away ? Pain the most horrible tiredness and all doctor says you actually don't fall into the category I am petite had a good diet very outdoors  so I think we need the genetic route here? because support is absolutely terrible and I am disgusted with follow up advice 
This is the most terrible pain !I had an ectopic pregnancy in my twentieth year and almost on parr terrible pain 

Albus_Scope

Hey there @wendywoo100 and welcome to the community!
  I'm so sorry to hear you're having such a tough time.  We of course cant give medical advice here, but we can offer you lots of support and maybe even help take your mind off it all with some nice chats? 

I'll move this post into a different category, so more people in the know will be able to see it.  But if you need a quick pick me up, I'd recommend checking out our Coffee Lounge. 

chiarieds

Hi @wendywoo100 -& welcome to the community from me also. I'm sorry you've joined under such painful circumstances, but I'm sure you'll find everyone here supportive & friendly. May I ask what you did working in the NHS? Please don't say if you don't want to tho.

There's some info from the GUTS charity, which may be of interest, but with apologies if you were already aware of this info (it does give a link to the NICE guidelines too): https://gutscharity.org.uk/advice-and-information/conditions/diverticular-disease/

I can understand why you feel so frustrated, as you're certainly not a typical diverticulitis patient with your weight & lifestyle. The GUTS link about diverticulitis has another link to research this year, which you may like to find out more about. I don't know if they're looking into a purely genetic cause with some however: https://gutscharity.org.uk/research/psps/the-future-diverticular-disease-research/

You may find this of interest, which is the most up to date paper I could find: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8713340/

I'm aware that in some with diverticulitis there can be a genetic component, as it can be found in Ehlers-Danlos Syndrome & Marfan Syndrome, as mentioned in this paper, & I have the hypermobile type of Ehlers-Danlos Syndrome. I hope some of this may help.

Hannah_Alumni

Hello @wendywoo100

Welcome to the community!  

I am sorry to hear you have been so unwell with Diverticulitis. I have Inflammatory Bowel Disease and now live with a stoma. I remember all the pain in that area well. We are all here for you if you just need somewhere to vent

I would assume you have already consulted with your GP about pain relief, but have they mentioned the pain clinic at all? It may be worth asking for a referral to discuss more support. In my situation, after being in just horrific pain each day, I went to my GP and requested another consultant. It took a while but that got me on a better treatment track.