I am Melissa. I am 33 years old and I was diagnosed when I was 30. It all started one day when I went to the bathroom and there was blood in the toilet. Ugh. The sad thing is I took a picture of it and sent it to my husband and asked him if that was normal. Really! Of course his response was "No". I was diagnosed with a colonoscopy about 1 month later. At first my doctor put me on Lialda which was amazing but it increased my liver enzymes so he took me off of that and put me on humira and prednisone. Unfortunately I don't do well with prednisone. I yelled at my husband, boss and co workers within 1 day of taking the prednisone and told my dr that unless he wanted me to be homeless, jobless and divorced then we needed to switch to something other than prednisone. He took me off of that and didn't add anything. I was also told that I needed to change everything I ate. At this time I had just worked my butt off to lose 40 lbs so now that I couldn't eat vegetables or fruits I put on 50lbs. I tried gluten free, I tried cutting everything out and adding things and taking away things. It seemed that one day one food was okay but then 2 days later it was horrible for me. I have switched doctors to a physician that is 3.5 hrs away because I felt that the local one didn't care. The new dr has added medications and taken away meds. Nothing seems to be helping and I have never been in remission the entire time I have had this. At this point I am depressed all the time because of the weight gain and the feeling that I can't go anywhere without having to go to the bathroom all of the time. I have had accidents around family and friends and now I have anxiety every time I go anywhere. I am always worried whether or not I will make it and be okay. The pain is ridiculous and the not sleeping at night is horrible. I am up at least 3-4 times a night going to the bathroom. My poor husband is being as understanding as he can be but when I'm tired all the time and not in the mood for "married" stuff he gets frustrated which is understandable. Does it ever get better? Thank you for the opportunity to tell my story.
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Does it ever get better?
- Thread starter quattlebaum
- Start date
I don't know if it gets better, but I'm hoping it does. Popping in to give you a hug and say I know what you're going through. My spouse has also been as patient and understanding as he can, but he's gotten pretty apathetic to me being "sick all the time," and I can't really blame him. How many times in 21 years can you hear your wife say, "I don't feel good?" and still pay attention, kwim? Plus the question at night when we get into bed, "How's your stomach feeling?" isn't really concern... it's a feeler whether or not married stuff is going to happen! LOL Which it kinda has too, no matter how you feel, in order to keep some peace in the marriage, right? Ugh.
Rooting for you!
L
Rooting for you!
L
DJW
Forum Monitor
Sorry your having such a rough time. When I was diagnosed it felt like I would never feel better again. It can take time but it can definitely happen. You mentioned trying different diets with no success. Have you tried a food and symptom journal?
It's tough. Hang in there...try not to give up.
A day at a time. Sending you my support.
It's tough. Hang in there...try not to give up.
A day at a time. Sending you my support.
Hugs Ds was dx at age 7.
The first year was the worst
Until we found the right med for him that was remicade
But later Humira has helped
He is almost normal now and none of the kids at school even know he sick .
There are things like uceris which is not absorbed as easily as pred in your system .
There is solumedrol and decagon etc...
There are other non tnf meds -simponi /stelera etc....
Have you tried EEN (formula only )?
It's as effective as pred in kids and some adults
You drink formula only -ensure , peptamen etc...
For 6-9 weeks
Most inflammatory numbers go down
As far as fruits veggies -Ds can eat raw but very cooked -mushy mostly work for him .
Hugs
The first year was the worst
Until we found the right med for him that was remicade
But later Humira has helped
He is almost normal now and none of the kids at school even know he sick .
There are things like uceris which is not absorbed as easily as pred in your system .
There is solumedrol and decagon etc...
There are other non tnf meds -simponi /stelera etc....
Have you tried EEN (formula only )?
It's as effective as pred in kids and some adults
You drink formula only -ensure , peptamen etc...
For 6-9 weeks
Most inflammatory numbers go down
As far as fruits veggies -Ds can eat raw but very cooked -mushy mostly work for him .
Hugs
Sorry to hear about your frustrations! :thumbdown:
When I was first diagnosed, it was awful! I had 2 long term hospital stays, was out of work for 3+ months, packed on almost 50lbs, due to Prednisone and then the guy I was dating who I thought was a decent guy wanted to "take a break" after seeing me in the hospital.
I had a very hard time accepting my illness, mainly because I went from diagnosis right to it being moderately severe, it all happened in the blink of an eye. I became angry, depressed and anxious. I was very fortunate though, to have a GI doctor who knew my case was too complicated for him and he then referred me to a group of doctors who were more specialized in Crohn's Disease. Once I was put on a biologic that worked for me things got so much better! I've also learned though out the entire process that I really need to advocate for myself. If something doesn't feel right or I have questions, I contact my GI doctor. If they can't be bothered to answer questions or get back to you, search for a new doctor. I would let your doctor know about the depression, as well as the anxiety. They could prescribe you something for it. Anxiety can trigger your Crohn's (at least for me it did when I was really bad, I was prescribed Xanex and it really helped).
Some other things that helped me were reaching out on this site and I also set up a Crohn's blog. There is a very large internet community of fellow IBD people, who are very supportive and know what you're going through!
I think once you get on some meds that really work for you, it will help and yes, things can get better!!:cat:
When I was first diagnosed, it was awful! I had 2 long term hospital stays, was out of work for 3+ months, packed on almost 50lbs, due to Prednisone and then the guy I was dating who I thought was a decent guy wanted to "take a break" after seeing me in the hospital.
I had a very hard time accepting my illness, mainly because I went from diagnosis right to it being moderately severe, it all happened in the blink of an eye. I became angry, depressed and anxious. I was very fortunate though, to have a GI doctor who knew my case was too complicated for him and he then referred me to a group of doctors who were more specialized in Crohn's Disease. Once I was put on a biologic that worked for me things got so much better! I've also learned though out the entire process that I really need to advocate for myself. If something doesn't feel right or I have questions, I contact my GI doctor. If they can't be bothered to answer questions or get back to you, search for a new doctor. I would let your doctor know about the depression, as well as the anxiety. They could prescribe you something for it. Anxiety can trigger your Crohn's (at least for me it did when I was really bad, I was prescribed Xanex and it really helped).
Some other things that helped me were reaching out on this site and I also set up a Crohn's blog. There is a very large internet community of fellow IBD people, who are very supportive and know what you're going through!
I think once you get on some meds that really work for you, it will help and yes, things can get better!!:cat:
- Location
- USA
:ghug: So sorry for you struggles!
(Also, is your dx "Crohn's"? If so, there's a a clinical trial that's going on now at Qu Biologics in Vancouver you might qualify for - http://www.crohnsforum.com/showthread.php?t=60661. Last I heard the travel stipend was covering most folks travel expenses in full.)
^ This has been so vital for me -- there's been a world of difference in my experience between "general" GI doctors and GI's who are "IBD/Crohn's Specialists". Is your current GI an IBD specialist?
(Also, is your dx "Crohn's"? If so, there's a a clinical trial that's going on now at Qu Biologics in Vancouver you might qualify for - http://www.crohnsforum.com/showthread.php?t=60661. Last I heard the travel stipend was covering most folks travel expenses in full.)
I'm from the UK and was diagnosed in 1995.I also flare up regularly. What I do know, is that the flare ups ease - even when it doesn't feel like it. I've tried Prednisolone on several occasions, but it did get me down, so I opted not to take it any more. I tried to eat no fibre at all (and,importantly, no skins) on fruit and vegetables. This made me feel a bit better and although I did gain weight,I thought,I can lose weight later,when I feel better. I've found diet a big help. What matters is that my symptoms eased. It's hard for a non-sufferer to understand the effects,because in many cases,you may seem fine on the outside although you may be in a lot of discomfort inside. Sometimes,even posting on sites like this can ease your anxiety,so I hope the advice given by people will help (even if just a little).