Crohns and recurrant Pelvic Inflammatory disease

[ashleigh]

Ok so here it goes,

I'm 19, female, white, living in England.

I was diagnosed with my first flare up of PID (Pelvic Inflammatory Disease) in 2011, again a month later and 3 times in 2012 once being hospitalised for 4 days.
Symptoms: lower abdo pain, extreme tiredness, low/no appetite, dehydration, discharge, unexplained bleeding.
The doctor doesn't know why it keeps coming back and all tests come back negative except fluid in something called the POD (pouch of Douglas)
Anyway,
Early 2013 the doctor referred me to a Gastro team as the pain subsides with antibiotics then comes back. I had a colonoscopy which was EXTREMELY PAINFUL and 11 biopsies were taken. Results showed chronic inflammation of the terminal ileum and I was referred back for a follow up apt, no meds given. I then went to A&E the next day as was in excruciating pain and nothing was done. A week later still in pain so I visited the GP who started my on Pentasa 1g, 4x a day. I stayed on these for 4 days and suffered serious side effects so stopped the treatment.
I have now been referred for a URGENT referral to a private hospital for more investigations into whether it is definitely crohn's but that's what they assume.
symptoms as they stand: severe lower abdo pain, BM between 3-8 a day, sometimes constipation, mouth ulcer (2 in the last 2 weeks, never before) cant eat, cant tolerate fibre or dairy. A couple pounds lost nothing major

I just want to know if anyone has experienced anything like this, a connection between gynae and IBD.

PLEASE help me .

 

[lizbeth]

Hello Ashleigh,

Welcome to the forum.

You do have a lot on your plate at the minute! I'm sorry you're going through this, no wonder you're tired. Do you have a date for the urgent referral yet? I don't have any experience of PID but if you check out the females-OB/GYN subforum you might find some similar issues there?

Regarding diet, it's best to avoid high fibre foods in flare, have a look at the info relating to low residue foods, basically avoid fruit and veg with skins on, nuts, sweet corn and corn products, spicy foods and carbonated drinks and I'm sure I've left something out . Some people can't tolerate lactose as well. Everyone is different as to what we can and can't eat, the same with medication, it's a shame you had side effects from the pentasa. Hopefully you will get to your appt very soon and get started on something to help. It's worth having a go with the diet until then and I would suggest keeping a food and symptom diary that will help you recognize triggers. Pop something warm on you tummy too, I find it can be very soothing, or a hot bath can work wonders .

Good luck, I hope things turn around for you soon, best wishes and a big hug. :ghug:

 

[ashleigh]

Hiya,

Thanks for the reply.

No date as of yet for the referrAl letter was only written 2 days ago but as I'm going private hopefully not to much longer...

Regarding my diet, it's awful . Living off grilled chicken and bread and peppermint tea.. It just hurts to much

Keeping a diary is a very good idea .. Will have to start that today ..
Yes baths are amazing. Surprised I'm not permentally wrinkly from them lol.
Hopefully I'll get to the bottom of it.

Thanks xx

 

[Weenick]

Hi. It sounds like you're getting masses of symptoms at once. I've had Crohns a long time and get gynae symptoms due to abscesses and fistulas. I have an abscess just below the pelvic floor (supralevator abscess) and this can give me sweats, fever, vaginal pain, low back pain, increased urination and sometimes sciatica. It's part of my Crohns and can make the bowel issues worse (increasing BMs), due to increased infection.
This type of abscess is best diagnosed by MRI scan and I get regular scans now to make sure there are no blockages.
Of course most of your symptoms are typical of Crohns and you are absolutely right to eat low residue foods and take lots of baths. When you get seen eventually bring a written list of symptoms and include even things you think are insignificant.

Best of luck.

Nicky

 

[ashleigh]

Thank you.

I stopped taking my pentasa yesterday, as instructed by the pharmacist and now I have diarrhoea .. I'm absolutely knackered! I work full time in retail so glad it's my day off today, home bound it is!

 

[lizbeth]

I found the diet aspect really difficult to accept cos I'm diabetic too and the low residue diet does not suit that very well, I do find that the diet is quite bland and for a while all I lived on fish and/or cauliflower cheese! But it is worth doing, I switched to a diet to help manage strictures and I do think it has helped. I know that at the stage you are at it is very difficult to manage food and symptoms, little and often might help. Can you take something to help with the diarrhea? That in itself is very tiring. I hope you have a restful day off. Take care. :ghug: