Severe adominal pain daily

[sherriehrhart]

I have crohns. I've had it for 3yrs I'm 53 t
yrs old. Its the worst thing I've ever dealt with. I had 19 inches removed a year ago. It was terrible recovery. I am unable to work. Which has really debilitated my lifestyle. Being a chef by trade doesn't make it easier.I have a lot of flare ups. I've tried so many ways to find balance but no luck. I'm beginning to question my doctor. Any advise?

 

[Trysha]

Hi Sherrie
Welcome to the forum.
There is plenty of information to be found here and you will find many friends to help you.
I am much older than you and would agree that crohn's is a difficult condition to treat and to endure.It has been six years since my diagnosis of Crohn's.
Every night I have abdominal pain which at times is unbearable. My GI does not give pain medication nor antispasmodics---says they don't work.He also says some of my pain is IBS.He is very conscious of my age and I am afraid he might drop me as a patient because of it.
He has given me steroid treatments, Imuran which had to be discontinued due to adverse reaction and Remicade which was discontinued after the third infusion due to reactions. Currently I have no treatment, just clinic visits as he decides.
Daytime I cope since the pain seems less, mostly.
I manage the pain with heating pads , hot water bottles and spit , perseverance and endurance.,having a high pain threshold. Sometimes I wonder how long I will manage, it can be very depressing if you allow it to be.
I have found meditation helpful and really feel better after a therapeutic touch session.
Occasionally I have to take tylenol, which helps the pain for me.
I sometimes make a ginger drink with honey and fresh ginger root, it helps the nausea.'
ginger has been reported to be anti inflammatory.
I follow a vegetarian type of food ,low fat, no meat or fish and feel better for it----when I can eat., some vegs don't agree so avoidance is the rule.
I also have a juicer for fruit and vegetables when I don't feel like whole food.
My appetite is non existent so sometimes I use meal replacements as well as juices..
I am trying to stop crohn's from running my life---it is not easy but it is essential in so far as it is possible.
For a few weeks I felt much better but symptoms are now creeping back.
I am trying to accentuate the positive though.
There are many people on this forum who have it much worse than I do, and it is heartbreaking to see their young ages.
Hoping you will feel better soon
Hugs and best wishes
Trysha

 

[Wendles]

Hi Sherrie,
My son was diagnosed last may aged 12 for a long time after being put on imuran he had pain every night . The only way we stopped the pain since September is he had a round of entocort and 8 week drinks only (een) of ensure.
At the moment he is doing well no pain which is great has still had flare ups mainly to getting back on food and finding his triggers. I think the total bowel rest along with the entocort has done wonders
Good luck Wendy

 

[sherriehrhart]

I do remicade every 8 weeks take nexium folic acid inmuran iron infusions b-12 d-3 I have pain med and muscle relaxers. My jiints muscle and bones hurt so bad everyday I barely get out of bed but once a week. And I wish I didn't want food. Liquid diets yuk I live in new orleans hard to not want food. Makes me so sad. Thanks for advice

 

[littlefishes]

Go with your gut feeling... If your doctor isn't giving you the answers... Seek them out till you get some...


Sent from my littlefishes

 

[mascarim]

I know how you feel with hating the liquid diets. I love food... so much. Especially the kinds that are bad for me. But sometimes you have to look past that and try to tone down what you eat, at least until the pain and such things subside. I'm currently flaring pretty bad and I'm forcing myself to do a liquid diet for a few days. Also I think if you are doubting your doctor try a different one. I tried one GI once who was actually batty. Some of the things she suggested were just so not right. Good luck! And I really hope you feel better soon!

 

[scoutfinch]

Sorry to hear you're flaring so frequently. Is it possible that the Remicade is no longer effective? What does your doctor recommend with regards to your treatment? I was on Remicade for a year before I developed an allergic reaction to it (it also had not been working very well after 6 months, but I stayed on it, hoping it would magically start working again after an increased dosage - which it did not). I moved onto Humira a year ago and it's given me my life back. I wish I had been more aggressive with treatment much earlier in my disease.

I can imagine how difficult it must be to be a chef with Crohn's. It's such a physically taxing occupation. Not to mention the food aspect. Not to mention that NOLA is a city with fantastic food. My advice would be to reassess your treatment - whether that means getting a new doctor, changing your treatment, or changing some other aspect of your life that may help (diet, exercise, etc) - but do something to try to improve the situation. The worse thing is inaction. Good luck!