Hi All,
I probably had Crohn's most of my adult life, misdiagnosed as IBS, a diagnosis I always doubted as I have no constipation or diarrhoea.  For many years I had 'flares', where I would be very ill with abdominal pain and fever, which I recovered from after a week's bedrest and fluid diet. On the whole the illness did not interfere much with my life, as long as I was careful what I ate.  Diet wise, I have been on a strict gluten-free and dairy free diet for 40 years. I do not drink alcohol or smoke.  
The 'flares' seemed due to stress more than anything, as my career was demanding..

5 years ago I became ill again with the usual pain & fever, but this time the symptoms did not go away after rest and light diet.  The pain became chronic and I developed muscle spasms, severe shortness of breath, inflammatory arthritis, uveitis, aching 'heavy' legs, pain in feet etc..  I could not put it down to stress as I have led a quiet life for 6 years.  

Many thorough investigations of bowels over 5 years showed some minor problems. Needless to say the small bowel xray came back "clear". Recently the pain got worse so I was sent me for another u/s scan. Lo and behold the radiolgist found my entire small bowel is enlarged due to inflammation.  I am due to have barium xray but meanwhile the doctor is assuming my pain may be due to a stricture.  

My doctor's attitude to surgery is it should be the last resort. I understand why --- risk of post op infection, risk of reoccurrence of stricture, risk of adhesions etc.  But the alternative of living with this debilitating condition which restricts my life so much seems unbearable.

For several weeks I have been on a liquid diet, (soups and liquidised meals), avoiding high fibre vegetables, and cereals, and some of my symptoms have subsided. Food is not a trigger for worse pain as long as I avoid high fibre. But I am still in pain -- it is a constant tugging sensation in my abdomen and a feeling of pressure in my side. A couple of hours after a meal I get
muscle spasms in my chest, and these in turn cause the severe shortness of breath.  (btw, the chest muscle spasms are not
heart related !)    

I cannot do anything that involves bending or lifting, or using my arms repetitively, or the pain becomes intense, and I become so short of breath it triggers a severe asthma attack (I developed asthma 2 years ago as a result of the chronic inflammation in my bowel).  

Surely I would have a better quality of life than this if I had surgery?!

My pain is located in the upper left quad, just below the bottom of my ribcage, an area about the size of a 50 pence piece where it is agonizingly painful to touch.  The pain seems to radiate outward from that point. Do other people find they can pinpoint the exact source of their pain precisely?

Any advice anyone can give me on managing my conditon better would be much appreciated.

Thanks for reading.

cm

Hi there, i know what your talking about, surgery would surely be the answer, unfortuanatly the people that are on the outside, ie, surgeons Doctors, dont see this for what it really is, they only know hat we tell them. I truely feel that if they were goin through the same pain things would be different, im sure you would all agree. As for the pain, bein in a certain spot, i get pain in a certain spot which is very simularto yours, bt i also get pains in other places, at the same time and on there own, as you will see by other peoples comments we are all different and pains are in different areas, but the common factor is we all now what the pain feels like, and its rough and bad enough to give all these unwanted side affects such as the breathlessness,  im actually goin throughthe mill at the moment as ive been diagnosed with colits in my large bowel but also have a problem in the small bowel that has still not bein diagnosed yet, im waiting on a barium scan for that, im totally bloated upper abdo swelling of of belly, but i do go from the runs to being constipation, sometimes the constipation can bw worse for me than the runs, as when i have the runs i get a bit of relieve from the pain, where has the constipation the pain is there continuosly. At te moment im not prednisalone steroids to reduce my inflammation, but there bringing there own side effects. keep up the good work xxxsuexxx

Hi Sue, thanks for replying.  It sounds like you are going through a tough time, and I sympathise.    I am fortunate I don't have a problem with my colon (other than mild diverticular disease), and my BMs are normal and regular..  

With regard to drugs for reducing inflammation I cannot take oral steroids. I was prescribed them for asthma, but reacted badly
(terrible gut spasms, pain and diarrhoea) on even a small dose. They made my condition worse.  Also cannot take prednisolone through an inhaler (to A & E with severe breathing problems the first time I used it!)

The only way I have been able to take steroids in the past is by IM injection (very painful!) or as hydrocortisone cream, where the cream is absorbed through the skin into the blood stream.  I don't know if either of these methods would work for bowel inflammation?  An injection would have to be given at the surgery anyway, so only suitable as a short term treatment.

Can you tell me side effects you are getting from the steroids?  

How do you manage your breathing problems?  Do you have asthma?

Do you think you have a stricture which is the cause of your pain?

best, cm

Hi Side effect sto sterods, are shaky, a feeling of dizziness and basically a feeling like im the marshmellow man all floppy,, and yes ive got astham had asthma since i was 21. but it had got worst when this all started again 4 months ago, I will just tell you that i have had this stomach complaint for years and it was just put down to ibs for years, and for years i believe it was, as i could cope with it, but this time it started back last year in september time, and i went the doctors, only to be told it was ibs, this i wasnt convinced i lost 2 1/2 stone in a short time, all the years ive had ibs i never lost weight with it, anyway i finally got to see somebody that believed i had a problem and test and procedures have been done, to diagnose colits, but like i say theres some problem that is of the upper abdo , to which im waiting for a barium scan there was mention that it could be a narrowing, i only just found out that this is what a stricture is, so at this moment im sorry i dont know. But be sure that when i do i will let you know, Thank you for your respose would like to here from you soon tc xxxsuexxx

Sorry chilled im sorry where i said im not on steroids, it should say i am on steroids, i get carried away when im on here lol XXXSUEXXX

I never knew I had a stricture, trying to surface through my naval area.  The surgeon told me after he got in there to do a resection, and found he had a stricture too.   Quite frankly, the pain from the two areas were exactly the same.  My life sure is better with the stricture gone though.