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My Crohn's story

My story of intestinal issues actually begins five years ago, but my diagnosis of Crohn's was recent. Until September 9, 2010 I was under the impression that the cause of my diarrhea and abdominal pain was related to food intolerances. This is because the colonoscopy in 2006 showed no signs of inflammatory bowel disease, and I was told I had Irritable Bowel Syndrome and to eat more fruits and vegetables (thanks a lot).

On September 8th, 2010 I had the most excrutiating pain of my life. I was vomiting and experiencig the most severe abdominal pain which kept getting progressively worse. I ended up going to the hospital (and waiting four hours in agony in the waiting room) then getting my appendix removed, as the physicians were under the impression that it was inflammed. Apparently they were wrong, my appendix was fine but according to the surgeon my bowels were lined with puss -an indication that I had Crohn's. After the surgery I was hospitalized for a week due to complications - perhaps an infection? In my follow up appointments the surgeon is unclear as to why I was so ill after the surgery.

About a week ago I had another colonoscopy, the result: the crohns was not in my large intestine but was affecting my small bowel. After asking the physician how bad it was numerous times and getting no definitive answer, I finally realized that he may not know, since the colonoscopy only scopes the colon. Since then I have started a medication which apparently has many side effects and will need to be monitored monthly through blood work.

After all this, I feel angry and I hate everything. I am having a hard time coping and being positive, especially when I experience abdominal pain. I can't help but think my ultimate outcome is an ostomy and it is just a matter of time. Sometimes my pain now is as bad as when I went to the hospital almost two months ago, and I dont know what to do about it. I am upset with life (or more the diagnosis), the medication (with all its side effects) and the monthly blood tests. I feel as if it is unfair, and I keep thinking that I did something to deserve this (though I know I am just being irrational, but I cant help but to blame this on someone, even if it is me). I am now also scared to travel, have children in case they get Crohn's, and I am emberrased to tell people whom I might be interested in that I have this disease. Anyways I pretty much just want to have a temper tantrum.

I joined the forum to meet others with Crohn's and to find support.

Thanks for reading
Michelle:poo:
 
Hi, what you are feeling now is perfectly normal. Firstly, I take it you are on azathioprine (Imuran) or 6mp? If so, they can take up to 3 months to reach full effectiveness. Secondly, with small bowel disease I doubt you would get a permanent ostomy, they tend to do resections (cut out the bad bit and reconnect everything up) instead. Thirdly, do you have painkillers or antispasmodics to take when the pain is bad? If not you should go to your GP and ask! Finally, have you tried keeping a food diary to see if your pain is food related? Lots of people (myself included) find relief by changing their diet. If you haven't already, check out our wiki www.crohnsforum.com/wiki/crohns-disease for some informatipn about the disease and tips for living with it. See you around the forum!
 

Astra

Moderator
Hi Michelle
and welcome

I know how you're feeling right now, I really empathise! I had a dx of IBS for 15 years.
Rebecca has given good advice, and I advise you to go back to the doc and start questioning! Try not to fret about this, talk to someone.
There are lots of meds out there that could help with pain, you shouldn't have to just put up with it. What meds are you on now? A lot of people with inflammation usually start with a course of Prednisolone, have they mentioned this?
Don't take any NSAIDS, such as Ibuprofen if you're in pain, big no no for a Crohnie!
This is new to you, I know you're angry and scared, I was too, so start researching, read the sections on the forum, you're no longer alone, we're here to help, so any questions, fire away!
lotsa luv
Joan xxx
 
Hi Michelle,
Welcome to a fellow Canuck :)
Sorry to hear that things are so 'crappy' right now...pardon my pun ;) Hope that you will feel better soon now that they've diagnosed you!
 
Thanks for all the replies! Right now I taking Azathioprine 125mg/day and Budesonide 9mg/day. I also take digestive enzymes, probiotics, calcium, vit D, iron and fish oil. Rebecca: Your right I should go to my GP and see what I can do for pain control, I also have been to a naturopathic doctor and she tested me for food intolerances (which basically im allergic to everything) Its a hard diet to follow. I checked out the wiki, there is some really great information on there, I am learning tons. Thanks a lot

Thanks Joan, joining this site really helped me realize there are many others who share similar experiences and understand what I am going through. I have learned a lot so far just reading others stories and questions. The physician has not mentioned prednisolone to me yet. I actually dont even know exactly who I am supposed to be following up with since my colonoscopy. my GI guy just put me on azathioprine and gave me a prescription for a year and thats it. Pretty stupid system. My GP is also the one who told me to eat lots of vegetables and disregarded my symptoms five years ago. haha what terrible advice! So I am not sure what he can do for me. I might just get his referral to another GI specialist when I need to.

Thanks Kirsten for the support! I hope that the medication starts to work as well, this disease can be so embarrasing sometimes.
 
Let me know how the naturopath works...I'm thinking about trying that myself. We don't have any benefits though, so it will be out of pocket and I'd love some info. What did s/he all do?
 
Sorry about all this Michelle, it is so hard to stay positive when it seems like you never get any relief. The exhaustion of the situation must be wearing on you, too. I have full confidence you'll find what you need to know and lots of support here - just know we all feel it too, but you will adjust and there is life after dx!
 
the Naturopath is quite expensive, I went before I was diagnosed with Crohn's in 2008. Each appointment is no less then 100 dollars, but usually lasts about an hour. She attains a thorough health history, she recommended a blood test to determine which foods were causing my "Irriatble Bowel" and i guess im allergic to everything so I rarely follow the diet anyways, because its next to impossible. And she over charged me for probiotics and fish oil (like $80 each, when I went to a health food store it was only around $20). She was good but too expensive. She also mentioned accupuncture which is what i would like to try next. I would also like to see what other alternative options she has now that I have been diagnosed with crohn's. So I would go even if its only for a couple of appointments just to see what they recommend. They are very holistic and unlike most physicians I felt the naturopathic doctor really listened.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Michelle, we went to a naturo for diet advice soon after our son's dx. This guy pretty much followed the blood type diet recommended by Dr. D'Adamo's book. EJ was on his pred taper at the time and soon began to feel much better and his bleeding stopped. We still limit his diet based on the advice we got from him but like you, we found it too restrictive particularly for a then 10 yr old boy needing to grow.

I agree with the advice given thus far. I would definitely ask about pred.!! It soon calmed EJ's symptoms and the asacol and 6mp have kept it mostly at bay since early this year. Good luck!!
 
Sorry to hear you're having such a hard time right now. I also do agree about going to your doctor and or GI and get more information. Hopefully everything works out!
 

DustyKat

Super Moderator
Hi Michelle and :welcome:

I'm glad you found your way here. I definitely agree with a follow up to your current GI or a referral to a new one. Personally I think you need further testing so you know exactly what you are dealing with, like how much bowel is affected, is there any scarring, is there any narrowing, why are you in as much pain now as before.

I know you are having a difficult now and I have seen my own daughter go through the same emotions. My daughter has Crohns in her small bowel and has had a resection and if things are straight forward most people that have surgery in this area do not require an ostomy. You will move on from these feelings but it is early days for you yet and it is only natural for you to feel angry and cheated.

I hope you stay around so we can get to know you better and help you through this. Good luck and welcome aboard!

Take care, :)
Dusty
 
I know Dusty, I was expecting to know more about how bad my crohn's is after I had the colonoscopy too, but oh well. I should just see someone else, because the medication isnt helping and the pain can be excrutiating. How is your daughter doing now since the resection?
 

DustyKat

Super Moderator
Hey Michelle, :bigwave:

Roo has been fortunate. Come to think of it she was very similar to you in fact, diagnosed on the operating table but she required her resection there and then because her bowel was perforated and had infarcted. Anyway that was 4 years ago this past July and she has been in remission since her operation. Even in remission she had some really tough emotional times and that doesn't surprise me. It's hard at any age coming to terms with a chronic illness but I think when you are younger it is doubly hard, after all isn't this supposed to be the best time of your life?

At present Roo is living away at university and is just about to finish her first year. I can honestly say I have never seen her so happy and in control as she is right now. I think it is a combination of being where she wants to be, being surrounded by a group of positive and supportive friends and I think she is really coming to terms with her diagnosis and trying to be the best she can for herself - as in diet, exercise etc.

I know you will get through this Michelle and the best advice I can give right now is to be your best own advocate. You know yourself better than any doctor, if you think something isn't right, your medication isn't working, you're in too much pain, the test results don't match what you are feeling and so on then kick, punch, yell and scream until you get the answers you need. It's the very least you deserve!

I wish you all the luck in the world and please keep us posted on how you are going. Of course any questions you have just fire away and we will do our best to answer.

Take care, :hug:
Dusty
 
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