NEW to Crohn's

by Christine
(Newcastle, NSW, Australia)

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


I’ve been suffering with diarrhea 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 diarrhea, 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’m in so much pain I 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 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 gone 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 will burn straight away and be out the other end within 20mins or so some nights I’ll bloat so much it’ feels like a huge lump is forming in my stomach making it so uncomfortable to lay down stand or sit even when I’m not that bloated my belly is 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 2days 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 think I’m starting to feel a bit better but then I start to bloat again wake up skinny go to bed fat.
My symptoms not sure if all are related but I can go from constipated to diarrhoea in minutes although it’s not something regular but it seems to happen a least once every 2 months or so. I get really blurry vision some days and I’m fine others, had a huge sore on my tongue for months now just the odd one in mouth knees and feet ache
My belching could put Homer Simpson to shame. I have always suffered with migrans
I get sharp pain in odd spots chest area back and front, blood and protein in urine bright fresh blood after number twos and butt seems to ache at times, what used to be just lower abdo cramps is now also higher up and the last 2 days my sides are hurting maybe cause I’m so bloated.
This weeks bloods show there is still inflamation and x-ray showed possible narrowing now to have small bowel series scan 12/3/08

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reply to
by: Cindy

I too have Crohn's and do know the moments of stomach pains and mouth sores. I know this sounds so silly but my doctor prescribes Magic Mouthwash and also includes in the formula Tetracycaline(sp) which helps a little sometimes. But if that is not available they tell me to get childrens Benadryl and swish around then spit or swallow which helps with sores in the mouth and the tongue. My tongue cracks really bad til it bleeds sometimes- sometimes a b12 shot helps to. When my belching was at it's worse the doctor prescribe me Flagyl which seemed to help after about 10 days on it. I had a narrowing for years. I was diagnosed at age of 19yrs and now I'm 45 yrs. I was able to put off surgery till this year. I still have to have the pyloric area dilitated which helps that area. I had a foot and a half of colon removed just in January. What medicines are you on?

been around the block
by: barb

As we all do l suffer along with you. all of what you said is part of the illness. it seems no 2 people are the same some stay skinny some gain. l was on prednisone for 20 oodd year some years solid matience 1 a day ect now years later, l cant take it as my joints seize up like there sprained.. Lucky for me l went on remicade 4 yrs ago it was great. my 3 fistulas went away they said the vaginal one wil never.. life was good. toleralble. but back then l was a test subject so after 4 treaments the canada government said now you have to pay 12,000. so l crashed..... the 30 extra lbs l carried around fell off quickly and so on.. now 4yrs later the meds are still 3000.00 a treament but since l left my husband .. lm low income so its paid for but this time is not the same the fistula never went away. But energy and pain were much better. if you get the chance to go on remicade. make sure no interuptions. lve have this since l was 16 lm 45now and just try to take each day as a gift l have two lovely kid that keep me going just live life to the best you can peace and harmony are key. as with what the docs say they keep coming up with new things all the time.. good luck and well being



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