Diagnosed Crohn's ??

[carr50]

Hi everyone,
I have decided to join the forum today as in the past two days I have had bad stomach cramps, no appetite, temperature and fatigue.
The reason I haven't joined before now is that although I was diagnosed with mild Crohn's about a year ago I have had none of the usual symptoms ie diarrhoea, weight loss, pain etc. So I guess I was sceptical about the diagnosis.
It all started about three years ago when I started to feel extreme tiredness and breathlessness. I eventually went to the doctor, had blood tests which came back as my hb being 7.4 so quite anaemic! Was put on iron tablets and sent for various tests over a space of about a year. The tests included gastroscopy and colonoscopy and at that time the consultant queried celiac disease, however the blood test for that was negative. My blood test also showed that I have Mgus and I also had a rectal biopsy for (sorry cant remember the name!!!! ) I continued on the iron which helped bring my hb up, however I always have low iron stores. When I came off the iron I became anaemic again so had a capsule endoscopy.The report came back as small ulcer and inflamation in the ileum. One doctor dismissed it and said see how you go as colonoscopy was pretty much inconclusive! I didnt
get any better so the consultant did another colonoscopy and gastroscopy himself sayin that previously they hadn't got into the ileum.
This time the consultant got into the ileum took a biopsy and thats when I finally was diagnosed with Crohn's.
He then started me on steroids which helped my iron levels come back up, however when they stopped I became tired and listless again and am on and off iron tablets. I haven't really taken my diagnosis seriously and have felt a fraud after reading about the awful symptoms that most people seem to have. It is only after this weekend that I have thought maybe its the start of a flare up.My Gp has given me amoxicillin and metronizadole and I am beginning to feel better. Tender stomach but no more cramping. I would be grateful of any thoughts on my post.

 

[Astra]

Hiya carr50
and welcome

Good to have you with us.
I can't tolerate iron tablets, they always upset my guts, how about asking for an iron infusion? I had one and felt so much better, fatigue wise.
Also, if your Crohn's is in the ileum, ask if it's also in the terminal ileum. This is where we absorb vitamin B12; and if you're deficient in that, it will make you fatigued and listless.
Metronidazole (Flagyl) will help if there's an infection, but you really need to ask for a maintenance med such as an immunosuppressant like Azathioprine.
Check out our treatment sections on all the meds out there.
Remember, no one has the 'textbook' symptoms of Crohn's, we're all different, unique.
Good luck and check back with your doc for some meds, steroids are fine, but only in the short term.
xxx

 

[Angrybird]

Hello and welcome to the forum.

Crohn's can be a very tricky disease with everyone being different with how it behaves and the symptoms you get, just know you have come to the right place for lots of helpful info ans support.

Just to confirm once you stopped the steroid course you were not put on any type of maintenance med to keep the tum settled? Are you currently on the iron tablets at the moment and have you noticed whether certain foods aggravates things? Also have any of your vitamin levels been tested at all? When are you next due to see the GI doc?

AB
xx

 

[***Lisa***]

Hi Carr50 & welcome.

I agree with Angrybird. Have all of your vitamin levels tested and supplement accordingly. Sometimes taking the right combination of vitamins is more important than the medication you are taking. Also, check out this string:

http://www.crohnsforum.com/showthread.php?p=605397#post605397

If you keep asking questions, you will find the right answer.

Lisa :rosette1:

 

[carr50]

Thank you all so much for your replies,
In answer to some of the questions I am currently on iron tablets but stopped them because initially I thought that is what had upset my stomach.I originally took Ferrous sulphate which was fine but have recently been prescribed Ferrous gluconate. I am having my bloods taken again in a months time. I dont think I have ever been tested for vitamin levels.
I haven't had a hospital appointment since last June, they said that they would send me one in about 6 months so I guess pretty soon. Will probably ask my Gp to chase it up especially as I have had this episode.
Following steroids I never had any maintenance meds only back to iron. I am pretty sure that the Crohn's was said to be in the terminal ileum.
I feel so much better today, in all honesty the last couple of days have been a blur amidst the cramping, I have also had a really bad back ache. Still unsure as to whether this bout is connected to Crohn's. The hospital have always been quite layed back about it because I have had no symptoms apart from anemia. I quite often see different doctors at the hospital and they seem to have a difference of opinion. The Gp was a locum, she was lovely but didnt mention anything about it possibly being related to Crohn's.She said if it got worse over the weekend to call the on call doctor and if no better by Monday to go back.
I do feel alot better and obviously need to finish the antibiotics. I guess after that I will take the advice of you very helpful people.Thank you again for your replies.

 

[Angrybird]

I would definitely chase the GI appt and when you see them query why they felt that you didn't need a maintenance med. Also you could ask your GP to get your vitamin levels checked as I think a low B12 can affect your body's ability to absorb iron. Do you notice whether certain foods cause problems with the tum?

 

[carr50]

Hi Angrybird,
I will chase it up and ask about vitamin levels. I haven't really noticed any particular foods that affect me, but then again this is the first time that I have had stomach cramps and everyything else has been fine.
Thank you for your help.

 

[Sarah50]

Hi Carr50,

You said you were diagnosed with crohn's in the ileum. I'm surprised your doctor didn't put you on a regular crohn's medication after an initial prescription of steroids although my doctor never put me on steroids and don't want them!! He put me on Asacol which is medication targeted for that area. I know there are other drugs... I just wanted to share with you what my doctor put me on and it has put me in remission (along with a low residue diet):

My doctor told me that my crohn's was at the Terminal Ileum. Regarding Asacol, this is what I found when I googled it with crohn's:

TARGETED RELEASE
One benefit of Asacol is that this formulation of mesalamine is designed to be released specifically in the ileum, the part of the small intestine most commonly affected in Crohn's disease, the Johns Hopkins University Department of Gastroenterology and Hepatology reports. Because Asacol and other mesalamine-containing drugs act at the specific location where they are released, it is crucial that the drugs are released in the correct part of the digestive tract.

Anti-Inflammatory Effect
The primary beneficial effect of Asacol is to reduce inflammation of the digestive tract, explains the Johns Hopkins University Department of Gastroenterology and Hepatology. Asacol also reduces the production of free radicals, highly reactive chemicals that can damage tissue in the digestive tract. Overactive cells of the immune response are also reduced by Asacol, including lymphocytes, plasma cells and monocytes. For patients whose Crohn's disease is primarily affecting the ileum region of the small intestine, Asacol is effective in reducing symptoms and inducing remission, reports an article published in the August 2003 issue of American Family Physician.


Read more: http://www.livestrong.com/article/22...#ixzz2MUzEMs2t


I've never heard of steroids helping iron levels. The first iron pills I took bothered my stomach so my dietitian recommended the following brand (very inexpensive online) - they're coated and never bother my stomach. It's my understanding that it can take months and months to build back your iron levels so you might want to get those checked along when you see your doctor.

Vitron C - High potency iron dietary supplement. Plus Vitamin C to help your body absorb dietary iron more effectively. Easy on the stomach. Less constipation. Coated tablets.

You can buy them online - Amazon, etc or get them at a drug store:

http://www.vitronc.com/?utm_source=...=Insight2012&gclid=CN2rv_vI4bUCFWbZQgod2xwAhg