Primary Immunodeficiency

I had toxic megacolon that required emergency open surgery total colectomy w ileostomy. I found out that the j pouch surgeries to reconnect my colon need to be open invasive surgery cutting open a large scar from abdomen to pubic bone from the colectomy. The colectomy and ileostomy was the most painful experience, the surgery was over 12 hrs w complications during and after. I can’t imagine reopening this scar and all the scar tissue around it 3 more times. I’ve had 8 spinal reconstruction surgeries in 10yrs w titanium screws, plates & rods including replacing my tailbone - those surgeries hurt less than the colectomy. Has anyone had j pouch after colectomy? I’m worried about pouchitis and other infections bec I have a primary immunodeficiency disorder? I read ppl have 8-12 bowel movts after surgery? How long does recovery take? Is the pouch connected and working after first surgery? Is life every normal w a pouch?
#CrohnsDisease #DegenerativeDiscDisease #Colectomy #Ileostomy #jpouchsurgery
#Pouchectomy
#colorectalsurgery #Scoliosis #PrimaryImmunodeficiency #InterstitialCystitis #demyelinatonsyndrome #demyelineatingsyndrome

Last year 25th of Feb I was in for an emergency toxic megacolon opp already in septic shock, total colectomy was done. In Aug last year dr. did a hartman reversal ( small intestine link to rectum)

Feeling much better but scared of getting sick again because I was a whole month in hospital.

Dec 2022 I was diagnose with CIDP ( chronic inflammation demylation polyneuropathy). On treatment IVIG every 6 weeks.

This year 18th of Nov my Neurologist diagnose me with PI ( primary immunodeficiency). What I life chancing experience. Now I must get IVIG every 4 weeks for the rest of my life.

Still learning new thing everyday.

I am 45 years of age.

But my parents do not understand what am I going through and do not understand the new choices I must make to stay healthy.

Difficult to except new changes and choices.

And I am dealing with mental health issues aswell because of my medical issues.

So my dad's opinion is the dr's does not do their jobs, but he do not understand what I was dealing with.

So I am depressed and anxious and struggle to cope and have PTSD aswell.

I know their are people with a lot more on their plate.

But I feel so alone in all of this.

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

I have spent more than the last 5 years trying in every way i could to get the medical system and my community mental health providers to see/be willing to see that i had some kind if parasite attacking me. From convo 1 i was tokd kim you have bipolar 1 (and complex trauma) and this is psychosis nothing does what you are describing. Many times i have thought the visible evidence was enough that finally being literally treated in abusive manners for wanting help was going to be done because thjngs were so clear, only to find er drs and acute care providers etc who wont even let me tell them whst has promoted me to do things like sit (as partiently as possibke—- and w my myriad if medical disabilities most importantky a primary immunodeficiency, i have spent lots of time in hospitals), all night to be seeen in ER for the situation only to have what hapoened 2 1/2 weeks ago and again yesterday (monday morning) happen. The dr wont even let me tell or show them anything, 2 1/2 weeks ago literally saying that this is a psychosis and im discharging you and be unwilling to talk or interact any further, or yesrerday when i had almost passed out was still having the room spin and feeling extremely shaky and weak — note low potasssiumnabd a significantly prolonged QTc (cardiac interval) had caused me to pass out and spend 6 days here and i hadnt been home 24 hours yet — and we very quickly discovered i am now covid positive.— the dr once again discharged me and i tried to say w my primary immunodeficiency and so forth and there is more medically and environmentally hapoening than i wanted to get into and she told me that “ you are being discharged andx thsr The ER is not the venue for this.” I know this sounds completely crazy but i am sitting here in the waiting room waiting for tgd bus to start runing (i guess anyway) because ibcame back 7 hoursblater havung chest pain and also beyond desperate but knowing opening my mouth woukd definitely not go well — esp as the nurses were disgusted at my return and laughing as tho i was completely stupid and completekh deaf despite fact that even with a good protective headcover on and a shirt that covers my full back snd neck , so much is falling or diving or whatever off my body that the stretcher sheet was visible startjn v to be coated and my purple shirt us more white than purple and anyone who stood near and looking at my and coukd see could hardly havd missed the things falling and moving, i was discharged before 2am and have sat here in a (very very unusually and strangely empty ) waiting room w no patients for 4 hours waiting for busee to. Start running or uber prices to stop surging all the while trying to figure oilutvwgat the hell to do now as my therapist and my pharmacumist best frirmds will telll you this is real and we have been talking about thd possibity that after 5 + years and as severe as the problem has clearly become kver this calrndsr year, even if everyyne did tgeir very vest snd everythjng tight this may now not be survivable medically, and after being ignored while i know they had to see this and after all the abuse and mistreatment and iver and ovdr againnripping the life i keep startibv to piece togetger to shreds when this once again flares (although fir almost a year it gas jyst gotten worse andxworse — no flares) i have been sitting heres truthfully wishing i was t so damn stubborn about my surviving (over and over in my life) and tgst i wass braver so i could just end this withb my life. But i am me and botg those thjbgs are cery real abdc true about me, and so i literally ding kniw what to do. I cannot ince again. Go hime snd continue as my apt is so contaminated i get 20 x worse inb15 min and my most special, wonderful loving little esa kitty is clearky suffering noth from what i have spread tk her abx throughout thd space and from my ibability to comfort snd be tgeee anx make it better, and i hust cant even walk onto the hallway again the guikt and grief themselves might kill me frankly, but i know telling anyone here i am psychiatrically jot ok now wont be taken as an honest and real statement being made bc i am trying to do what is right, and i also know in any situation that i need an ambulance tgey will bring me gere no matter what i want, and havjng never been in tge er heree w a psych issue this got me sent trightbti psych section of er upon presentation of mysekfcwhen whetger this partg isxreal oorcpsychosis or whatever in their minds, i was saying i wass medically unwell. And seek in v meducal help and tgey frew labsxand took everything from. Me and held me w no medical or mh care at all ivernight onky to wakr me the next morning and inform me i had been discharged by tge dr before shift change and his deparrture almost 4 hrexearlier snd i needed to leave — and they had drawn labsxtgst ifcthey had lokked at woukd have shown them meducal need such that the QTc andxpotassium issues weee alreadyvpresent abd they onky worsened befotd i was back almost a week later w a dangerously low bp and not okay and tgey enddd up habmcubg to admit and keep me and provide mrdical treatment, i am being treated worse w every interaction i have w anyone here bc of that psych er now being on the recordx rather than my diagnoeses and meds bring in my echart and so forth. I dont have funds to ubdr or lyft elsewhere even though many teaching hospitalx in the metro anx suburban area, plus i know showing up
Elsewhere now woukd nr seen as a reason to believe i am acting in wats that give them every rught to treat me w no dignity or respect etc, and on top of that i am beyond exhausted and not well and feeling so so unable tk go try to takr bus anywhere in so many leveks, but hust ad ms unwilling to tryto get any more care here. And while i have nk plans i honestly havd never felt despite my many very serious illnesses and my multiple really bad experiences that have contributed to complex trauma, felt less interestec i or willing to continue w life. Help w encouragement or thoughts but not dictates oc what i need to di please! Thx

#PrimaryImmunodeficiency #MultipleHealthChallenges
#MultipleSclerosis #DMS #degenerativespinedisease
#Arthritis #CrohnsDisease #Endometriosis #Adenomyosis #Epilepsy #Fibromyalgia #Migraines #Spasticity #

Hello, I’m new here and I’m dealing with some really rough relationship issues that I feel have a lot to do with my health. Where do people discuss these challenges on The Mighty? I will admit that tim struggling with the relationship and it’s a 10 year relationship and we love each other very deeply yeah I feel like my medical condition. Makes it too scary or risky for someone to take a chance to be with me based on the numerous systems have been affected by my systemic connected tissue and auto immune disorder. The person I was dating for 10 years that we’re about to be engaged is a physician had a kidney transplant and I think understood too well how much risk I’ve had recently with several near death medical crisis according to my present medical history, my trajectory is not going upward at all. In fact, my immune system has attack more organs systems and now I’m not a surgical candidate, major spinal deformity or hammertoe/bone spur injury.
Im still here. My bf broke up w me. We were supposed to get engaged shortly. Hard week. I think it’s too late I missed my chance. I was in a to me and my kids which took me 15 yr marriage that was destructive to me and my kids. It took me ten years to get a divorce. I’m still dealing with the fallout from that. Dating# #mixedconectivetissuedisease #PrimaryImmunodeficiency #DemyelinatingNeuropathies #MultipleSclerosis #CrohnsDisease #AutoimmuneDisorder
#Epilepsy #Arthritis #DegenerativeDiscDisease #ChronicFatigueSyndrome #Arthritis #DiffuseIdiopathicSkeletalHyperostosis #seronegativearthritis #Scleroderma #Endometriosis #Gastroparesis #ChronicVestibularMigraine #Migraine