Crohn's Disease for the past 18 years

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Jun 2, 2012
Messages
39
Hi Everybody,
I am new to this forum and as many of you have been 'blessed ' with Crohn's Disease for the past 18 years. Although, I have developed four strictures in the ileum, resection is something that I wish to avoid if at possible. Over the years, I have tried all the various medications that are prescribed for the condition without much if any improvement. I fully appreciate that eventually surgery may be the only option

Lomotil and Immodium are my closest friends! Recently I was advised to try Questran Lite and that has shown some initial promise, fingers crossed. The only temporary and effective relief has come courses of Prednesilone, but the that does create some undesirable mood changes in my case.

Oddly, I was diagnosed with CD following an emergency appendicectomy with resulted in peritonitis and the subsequent removal of part of the terminal ileum.

Prior to this event I was a perfectly healthy 50 year old. I wonder whether any one of you has experienced a similar experience? Research tells me that a very small number of people may develop Crohn's under these circumstances, but the counter argument is that the individual had may have been predisposed to disease anyway.

Anyway, we soldier on regardlessly. There is no advantage in whining about one's lot when there are those, particularly younger folk are much more affected than me!

Yours in Crohn's
Merv
 
Hiya Merv
and welcome

I've moved you, you were stuck in someone elses thread! This way you'll get seen.
Try to go easy on the Immodium my friend, not good for long term, our bowels need the natural peristalsis.
Have you tried Entocort (budesonide) a steroid but much milder than Pred. I've found it very effective.
Have you had your vitamin B12 checked lately, without your TI there might be some deficiency.
Good to have you here with us!
Lotsa luv
Joan xxx
 
Hi Merv and welcome! I'm glad you joined and appreciate you sharing your story :)

Have they evaluated whether or not the strictures are due to scar tissue or inflammation?

Do I understand you're not on any medications right now? Are you having any specific symptoms?

Again, welcome!
 
Hi Merv and :welcome: to the forum. Also wondering about the narrowings being down to scarring or inflammation?

With regards to your query I have noticed from other stories here that poeple are diagnosed with appendicitis and when they are then operated on for removal the problems with the bowel are discovered, in some cases though there have been months/weeks of ongoing symptoms that have led to an ER visit, as per usual with this disease there is not hard and fast rule for everyone to follow.

Glad you have decided to join and hope you can be feeling better soon.

AB
xx
 
Hi Merv and welcome! I'm glad you joined and appreciate you sharing your story :)

Have they evaluated whether or not the strictures are due to scar tissue or inflammation?

Do I understand you're not on any medications right now? Are you having any specific symptoms?

Again, welcome!

G'Day David,
Thanks for your kind welcome. The identified strictures lie variously in the ileum. At the distal ileum, one was unable to be dilated via balloon, due to concerns about the possibility of rupturing the wall of the intestine. The remaining three offenders are in no man's land not able to visualized by colonoscopy,nor gastroscopy. CT scans have indicated their presence, but a MIR booked for August might provide more information.

I am afraid that I cannot say whether there is scaring/ inflammation. The TWO gastroenterologists that I see can't shed might light on the subject either!

Oh, how I wish I was able to exist without medications! With the exception of IV infused drugs I have had been prescribed with all that is currently available! Presently, I take immodium or Lomotil , Questran Lite and judicious quantities of Codeine and Endone. When prescribed Prednesilone I have a period of marked improvement in terms of bowel frequency, but the mood changes are a problem. I also have 2/12 IMI of B12, Being a retired old RN I can self administer.

Physically, even with the aforementioned medications, I continue to have explosive diarrhoea, bloating, lower back pain, excessive flatus /colic pain and marked fatigue. After 18 years I now life my life around Crohn's, but try very hard not to let it rule my life. If I have to travel, I do not eat. Simple really no food no Poo! I have reached a point where I eat to live rather than live to eat. Osteoporosis and Osteo arthritic spinal degeneration [mostly lumbar] are adjunct conditions, as is Barrett's Oesophagus- short version!

Psychologically, I find that stress is a precursor to flaring. When once asked by a naive GP why I needed Xanaz for anxiety I replied that if you you were uncertain of the potential outcome of flatus you would be bloody anxious too! Humour, twisted or otherwise is oft the best solution, methinks.
King Regards,
Merv
 

Latest posts

Back
Top