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Christiny

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Hi all, I’d like to share my story and I hope maybe someone can help me understand.

I’ve been suffering with diarrhoea since what seems like forever I’m 37 now and I remember going to see a doctor in 1999 it was my local GP I complained then of constant diarrhoea, bloating and cramping she suggested it might settle when I returned the following week and again complained she suggested I try a wheat and gluten free diet to see if it helped, it did for a few days then it was back but I pressed on with the diet and soon I was cutting out other things and replacing others, I’d have good weeks and bad weeks some days I’d be in so much pain I’d cry at the thought of going to the bathroom or eating something. It didn’t seem right but the doctor didn’t seem to have an answer.
Then when I met my now husband it was so embarrassing at first but he soon became very supportive trying to help me find things to eat that didn’t upset me, but after we fell pregnant twice and lost both babies we wanted some answers one test showed that I had Lupus anti- coagulant and that I should be taking aspirin daily but this didn’t really help my diarrhoea and cramping but I guess it seemed to take a back seat now as we were so wrapped up in getting pregnant and keeping the baby alive.
We did a few cycles of IVF after it was found that I also have endometriosis which could cause cramping horrible period pain, leg cramps and bloating it could also spread to the bowel causing diarrhoea and bleeding that I was now experiencing. So I began to treat my diarrhoea as part of my life I didn’t bother whinging about it anymore the doctors would just look at me as if to say it can’t be that bad and I started to feel like maybe it was normal or normal for me. But just last Oct I had surgery to remove some of the endometriosis again and hopefully get some relieve, I was told it was everywhere “but on the bowel” and that hopefully it would settle with the endo go from everywhere else.
But no not this time as the weeks have passed my symptoms became worse than ever even the littlest piece of food would burn straight away and be out the other end within 20mins or so some nights I’d bloat so much it’d feel like a huge lump was forming in my stomach making it so uncomfortable to lay down stand or sit even when I wasn’t that bloated my belly was just sore to touch so I made an appointment to see my now new GP in 10 days was best they could do, unfortunately I went to work one night feeling tired and run down as usual but later the pain in my stomach and belly felt like it was rising and burning like never before and into my lower ribs, the next day the stabbing pains and vomiting saw me go to the hospital a nasal tube was put down my throat to help stop the vomiting and drain the faeces 2 days later a laparoscope was done full thickness ulcers were found then another 2day a colonoscopy was done large bowel was fine professor believes I have Crohn’s of the small bowel and now wants to operate again to remove a section of small bowel as she believes I have a blockage or narrowing of the bowel as I’m looking around 6months pregnant I was on 50mg prednisolone now taking 37.5mg but not really feeling much better starting to feel like it’s burning in my lower ribs with belching and wind.
 
hi christiny

i'm so sorry to read you're having such a bad time, and have done for so long without real relief.

it does sound now tho, as if you're heading in the right direction and getting the attention to this debilitating condition that you need. crohns can present in different ways to different people - i do remember having the swollen tummy and excrutiating pain that you describe, and the not wanting to eat for fear of what it would cause. i also had a miscarriage way back then, and i felt it was probably because my body was just too much in a mess to support another living thing. at the time i was anaemic and really underweight, so in my case i think it was a blessing in disguise - i dont know if the baby would have been ok had it survived.

i think the only people who can tell you if this is crohns, is your specialist team, and they may only find out for sure when they operate. either way, if you have ulcers and/or a narrowing in your small bowel, it does sound like something needs to be done.

in the meantime i'd advise a light and carefully planned diet - soft foods which will nourish you but hopefully not cause a blockage, & avoid acidic things such as citrus fruit & juice, curries etc as it sounds as if you're really sore inside.

good luck christiny, i hope things turn around in the right direction for you very soon.
 
Hi Christiny Welcome to the forum. I hope that your current medical team, and also finding resources like this place on the net, are a turning point in your health.
 
Christiny,

My Crohn's was misdiagnosed as endometriosis for about 3 years until I had a laprascopy which showed fibroids, but no endometriosis. After the fibroid removal did 0 to help my symptoms, I went to a GI who diagnosed my Crohns.

Unfortunately when you are a young woman of child bearing age, female problems always are at the top of the diagnosis list, even when your symptoms are indicative of GI problems.

I hope with your Crohn's diagnosis you will get treated properly and start feeling well again.

Wishes for good health.
 

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