Help and support needed!!

[s.robbins2]

Hi everyone, My name is Suz and i am a 41 year old teacher and mum of 2 from newcastle, England. In january i was admitted with hospital with severe infection in abdomen. Scans showed appendicitis and i went to theatre to have it out. Turns out i had a chronic abcess on my fallopian tube. Never thought anthing more until about a month ago got a painful lump in the same place. Was admitted to hospital with another infection. The doctors have now said it is crohns and the abscess in January fits with crohns.I get no diarhoea and the ct scan was unclear, as was the ultrasound. Had a white blood cell scan - where they reinjected my white blood cells with a radioactive tracer. This has showed infection in the bowel area beside the appendix. Having a colonoscopy with biopsies in 3 weeks time and have just come off the antibiotics 9 on them 4 weeks!] When i was dicharged from hospital 3 weeks agol i was put on masalizine and they have now doubled the dose but i still have the inflammed lump.
I am just so confused! Has anyone else had a similar story. My bowel movements are normal - so unlike the stories i hear of crohns. How will i know what triggers the inflammation eg foods etc as no diarrhoea to indicate this.? Will the masalizine reduce the inflammation and then it wont come back? The only thing i find is when i do too much lifting, walking up stairs or the stomach is poked and prodded it seems to inflame it even more and it gets worse. I really hope someone will be able to help me as i am so confused and scared of what the future will hold. I am normally so full of life and good health.!!!

 

[CDDad]

Crohn's can be very confusing. Different people have different symptoms. In my 23 years with Crohn's, I've hardly had any pain at all. But I've had many other symptoms and 3 operations.
The Mesalazine is a typical first approach to reduce inflamation. The colonoscopy will help them determine what is going on. They should be able to see right up to the appendix area / ileum.

 

[Rebecca85]

Hi, diarrhoea is more associated with large intestine problems. My Crohn's is in the same place as yours, and I do not normally have diarrhoea. But I do have looser and more frequent BMs when I have eaton something I shouldn't.

Mesalazine is a mild drug that probably won't reduce the inflammation, it stops it getting worse. I would imagine that once you have had the biopsies if there is still inflammation they will give you steroids to get rid of the inflammation.

Why not check out our wiki on Crohn's, there's loads of info on there to get you started! Www.crohnsforum.com/wiki/crohns-disease

 

[Astra]

Hi Suz
and welcome fellow Brit

I agree with Rebecca, but on another note, maybe seeing a gynae might be the best option, endometriosis can mimic Crohns. I had this, and my bowels, bladder and uterus were full of endos! I had a hysterectomy, then they found Crohns

have a read of this -
http://www.crohnsforum.com/wiki/Endometriosis-can-mimic-Crohns

Everyone is different, I don't get much diarrhea, I have loose BMs, but depends what I've eaten.
Ask for a referral to gynae, just to rule out other things.
glad you found us, lots of friends here for you, any questions, just shoot
lotsa luv
Joan xxx

 

[s.robbins2]

Thank you so much Rebecca. You have answered some of my questions already. How do you know what irrates your crohns as so far i don't even have looser bowel movements to figure out what does. How long is it between eating something and the bowel movement so you know what has irritated it? Does this sound like mild crohns or will it get worse? Tryoing to think of how on earth i can keep it under control and symptom free.

 

[s.robbins2]

Thanks Joe,
You have reassured me a little. Is there anything i can do to keep it under control? Could i be symptom free for a while if the inflammation goes?

 

[s.robbins2]

Thanks Joan,
I will take the info about the endo. to my doctor but i suppose the colonoscopy will and biopsies will see if it crohns. My consultant does not seem worried about me as i suppose i do not show horrendous symptoms such as severe diarrhorea, loss of appitite or weight loss but the inflammation is teerible and gets worse the more i do.

 

[rottengut91]

Hey Suz,
I tend to agree with Joan, could be gynae related or even something else causing recurrent infection. While not everyone with CD has diarrhea (3 or more loose or watery stools/day), it seems you would have some intestinal indicator of Crohn's activity. Maybe I'm misunderstanding, but it sounds like your chronically developing abscesses. Crohn's can definitely cause abscesses to form, due to the intestinal inflammation, but it seems you would have other symptoms related to CD. I'm definitely no doctor though, so what he** do I really know anyway.
As far as diet goes. I think most of us eat what our bodies seem to tolerate. If it doesn't give you any problems with pain and D, or gas and bloating, I suppose there's nothing wrong with eating it.
Anyway, welcome to the forum. I'm not much help, but there are many people on here that can be very informative. Browse the threads, feel free to offer any info or advice. Hope to see you around.

 

[mario]

Hi Suz.
I am from the NW (Cumbria) not too far from you!
This is how wierd CD is- I have absolutely no problem with food and eat anything I like unlike other people who have really restricted diets.
I think you should wait for your test results before you start to worry.
Crohns has so many levels of severity and yours could be really mild.
I first checked this site out when i was first diagnosed and it freaked me out!! (No offence guys)
But it's really great here. You just need to know that what is happening to other people will not necessarily happen to you and vice versa.
The point is that we support each other!

 

[mario]

Jeez, that Mario!
She's only been here for a week and now she's running the show! lol!!

 

[DustyKat]

Hi Suz and :welcome:

I'm glad you found your way here. My daughter has ileal Crohns which sounds like the area they suspect yours may be in if it is indeed Crohns. She never had diarrhoea in the lead up to her diagnosis and until her symptoms became severe she did not have weight loss or loss of appetite. That is the difficulty of this disease, the symptoms are many and varied. Good luck and welcome aboard!

Take care,
Dusty

 

[s.robbins2]

Thanks Julie,
I am going to mention gyne again if the colonoscopy does not show anything up. If the inflammation went down i would have no symptoms at all! Thanks for the support

 

[s.robbins2]

Thanks Mario,
i agree with what you are saying about scaring yourself with peoples stories but it is wonderful to feel that there is support. I feel this evening i have found out more than the docs have told me!

 

[s.robbins2]

Thanks Dusty, will keep you posted about how i do. Thanks for the support

 

[s.robbins2]

Hi everyone,
Just to give you all an update. I went in for my colonoscopy and they perforated the bowel whilst doing it. I was sent to theatre for an emergancy op to repear the perforation. They decided as the colonoscopy had shown a stricture and crohns riddled area around the terminal ileum and so they did a resection. They took away the diseased part plus the appendix plus the ceacum valve. I am a week post op and must admit - still in shock. I have a horrible wound from about an inch above my tummy button , all the way down. On the plus side i can eat anything without any pain. I am scared though that this will be short lived and after all this i will become poorly again soon. I know this seems negative but i feel i have lost all my confidence and hope. Your words of wisdom would be grateful , thanks, Suz x

 

[mario]

Hi Suz.
You have had a similar experience to me. After my emergency op (which resulted in a temporary ileostomy bag for a couple of months) I was also in shock. But let me assure you 2 years down the line I feel great. No recurrence of pain. Eat almost anything.
Personally i wear my scar with pride. I do need meds and often feel tired but hey! Good luck. Stress is a big factor in chrones so calm down and eat for England lol!!