Currently admitted in hospital - Suspected Crohns - Help!!

[arielseamermaid]

Hi,

This is going to be a long post as I have had a rough year with lots of symptoms.

About a year ago I started getting pretty bad pain when I ovulated and really bad period pain, debilitatingly bad, I had an ovarian cyst removed 2 years ago and during the op they visibly diagnosed endometriosis but I was asymptomatic for this so no further treatment done, I have follow up appointments in gynaecology every 6 months and as the pain tied in with ovulation and period time I raised it at a follow up and they said it sounds like endo so referred me back to the endo clinic. I see the endo specialist they put me on the pill and say basically see how you go.

A few months go by and I’m gradually getting worse and worse, pain days increasing by a day or 2 each month and painkillers currently just ibuprofen is also on the increase. I go back to gynae they schedule me to have the IUD but not until October.

On a second note during this time I had joined the gym (feb) and decided to try weight lifting and bulking to put some weight on as I’ve always been naturally slim 5”10 never more than 125lbs. I bulked for 12 weeks managed to gain 7lbs but my period came and I ended up in bed for the week, tried to go back to the gym but did like maybe 2 or 3 more sessions and threw in the towel because the abdo pain every time was insane.

About July time the ibuprofen is not working so I get put onto codeine along with the ibuprofen plus cyclizine because I have real bad nausea. Time goes by every month more pain, every month less life, I’m getting constipated and it’s put down to the painkillers.

Side note - about start August I get these weird bruises on my legs shins and ankles, they don’t go for weeks and the pain in my legs gets so bad I can barely walk. I go to the Dr’s and they say erythema nodosum probably due to mini birth control pill I’m on and tell me to stop taking. A few weeks later the lumps / bruises go, I have had some small flare ups since but nothing like the August one.

Gynae attempt to put the IUD in October but it’s not happening while I’m conscious I nearly kicked the consultant in the head it was so bad, it’s decided then that I’m going to have a laparoscopy and see what’s going on and put IUD in. I am put on amitriptyline on top of current tablets as codeine and ibuprofen becoming less effective.

November comes and everything has escalated to and insane level, overnight my constipation turns to watery diarrhoea which also ties in with my period, my appetite is dead even someone mentioning food makes me want to gag, I start getting fevers in the night with waves of 10/10 pain where I’m rolling around on the floor in agony. I go to the Dr’s and they do a blood test and my CRP and ESR inflammation is really high plus I’m also anaemic. They run the test each week to see how it’s tracking and it’s not really going down.

Last Friday I am in bed I wake up I’m crying in pain, I’ve got diarrhoea back I’ve taken max codeine, ibuprofen and 2 anti sickness tablets but I still can’t function at all, I get an emergency GP appointment and they give me oramorph liquid. This helps over the weekend but yesterday I start puking and can’t keep pain meds down, I phoned GP they say go to a&e.

I get to hospital they get me in straight away as blood pressure really low, I’m white as a sheet and heart rate is high plus temp up. They do an X-ray, CT scan and bloods. Comes back that my bowel and intestines have inflamed areas plus I’ve got inflammation in my mouth. They say suspected crohns and that I need to be admitted. I’m currently 117lbs so a BMI of 16.79 way too low!!

They’ve put me on steroids, 3 types of antibiotic while they rule out infection, taken away my codeine and ibuprofen and now I’m just on oramorph and tramadol if needed plus a vit d and calcium supplement. I’m staying in till inflammation lowers and am having a colonoscopy before I go so they can confirm diagnosis.

So basically this has all come to light in the last 24 hours and my mind is f**king blown, I’ve been thinking I’ve had a gynae issue for a year and the symptoms all endo related but now I might have a chronic bowel condition, I have had no bloody diarrhoea and only weight loss in the last month.

Just in the last 24 hours I feel better than I have in about 3 months, I actually feel alive again and next week I was going to have surgery to get the endometriosis checked!

Basically what happens now? Will I have to have surgery to fix this? If the steroids and antibiotics clear up symptoms how will I manage this going forward? I know I’m in the right place and will get help but I want to hear from people with the disease who have gone through the diagnosis process and treatment plan. I know everyone is different.

Again sorry so long I’m currently laying in a hospital bed having spent a grand total of 10 mins speaking to a GI Dr and googling freaking myself out.

Main symptoms -

Diarrhoea during period and loose stools occasionally outside this

Severe constipation

Developed a pile and skin tab on rectum this month

Nausea

Fatigue

Weight loss

Poor appetite

1 vomiting spell

Erythema nodosum

Joint pain in legs mainly

[willow24 Administrator]

Symptoms do suggest crohns. Hormones during menstrual cycle can effect the bowels, Iv always got pain and diarrhoea for 5 days a month even when crohns in remission.

Whilst constipation is more common after years of flare ups etc (from strictures and bowel thickening from scare tissue) certain pain medication can cause severe constipation and constipation can in itself cause a crohns flare up if you have it.

Ibuprofen can also cause inflammation of the bowel in people that are intolerant of the drug, but this is not crohns

Ask the doctor if they do faecal calprotectin tests at the hospital your in - this is a stoll sample and its sent to the lab where they look for increased cells associated with inflammation in bowel.

Also during a colonoscopy they will take bopsies- these will help with a diagnosis of crohns, infection or diverticulitis. Endometriosis can also be found in the bowel so it could even be that.

Hang in there, and let me know how you get on

Big hugs x

[SORRELHIPPO]

I agree with everything Willow24 says. I went through similar about 30 years ago, without the idea that any Gynae. involved, just that I had eaten something bad!!, When I had dropped from a size 16 to an 8 they admitted me. Then it was Crohn's. I do remember the feeling of being overwhelmed with it all, all you can do is relax if you can and go with it. I found that the relief of eventually getting a diagnosis and treatment that started to work, overcame the worry about the diagnosis itself. Stress makes everything worse, so, if you can you need to be a bit stoic, learn what you can when you get the exact diagnosis and ask the Consultant numerous questions, so you can feel that you are in controll. I wish the best and come back here with any questions.

[EOLHPC]

I agree with willow & sorrelhippo, but will just give you a tip: please don’t be surprised or confused if it turns out you have a Crohns-like condition rather than actual crohns. My husband has had early onset crohns disease for many years, so we both fully expected my manifestations added up to crohns...but instead they have turned out to be due to something similar but different

I’m replying because my collection of illnesses + diagnostic journey have quite a lot in common with yours.....and i’ve ended up with my dreadful signs & symptoms relatively more stabilised because my multidiscipline clinics (gastroenterology + immunology + rheumatology, with back up from urology & gynaecology) now have me relatively stabilised on crohns treatment protocols which include daily meds like those you’re now on...

and, after lengthy tertiary investigations, these multidiscipline clinics are agreeing that it seems the manifestations in my abdomen are due to an “immune dysfunction + connective tissue disorder-related enteropathy”.

Exactly which enteropathy will eventually be determined, but for now am just so glad to have lost that appalling abdominal pain + bulk & distention etc etc + to also be in care with gastro nutrition & dietetics on Exclusive Elemental Nutrition (yet another crohns protocol) unable to tolerate food by mouth, but luckily i can have the EEN by mouth & am tolerating plain rice cakes. We are aiming to get me back on to a very low residue diet asap

Thanks for posting aerialseamermaid...am so glad the health system is paying you close attention now...take care & good luck...please let us know how you get on

🍀🍀🍀🍀🍀 Coco XOXO

PS are you diagnosed with any other conditions than endometriosis? Cause i am 65 and was born with Hypermobile Ehlers Danlos Syndrome + was diagnosed with systemic lupus as an infant + endo. later and am now diagnosed with the usual secondaries to lupus (sjogrens, vasculitis, raynauds etc) all of which my consultants say are the causes of my childhood onset GI tract “mouth to exit” problems...and all these immune dysfunction + connective tissue disorders are also responding v well to roughly the sort of meds you’re now on...so my feeling is your doctors are on the right track and will hav3 you figured out + feeling “better” soon