How do you know if you are "better"?

[krs2]

Ever since I have started meds, my doc always asks me at every appointment "do you feel better?" My parents and my friends ask me the same question and it's so hard to give an answer. On the one hand yes, on the other hand, no.

Do I have more energy? No, not really, maybe even less so. After a day of work I'm falling asleep, sometimes in the car home. But In the mornings I feel energized and I even will do a small workout before breakfast.

Do I have cramps? Not as much, and they are very dull if any. But I'm so used to feeling cramps I know there is a dull sensation there most of the time, but I just ignore it because that's what I've trained myself to do.

What about the bathroom situation? Things are much more "solid" and healthy looking and I have a lot less urgency when it's time to go.

What about the rest of the body? Well I think my head is a lot more clear, I can "think" without being distracted by abdominal pain and be able to eat without worry about what's going to happen in the hours that follow. It gives me a lot more confidence.

Any new symptoms since starting? I actually started noticing pain in my upper chest from heartburn, but I think a lot of that existed before the meds and I only notice it now that I have been diagnosed and my doc identified that as a symptom. Before I knew my stomach was involved, I just assumed that upper chest tightness was just a byproduct of all the other crap going on in my body. Also, I have an incredible amount of gas that is uncontrollable at times. My doctor really has no solution to this problem and I have a feeling it's a side effect of one or more medications. It really sucks and it's basically the only thing holding me back from being able to leave my house and feel 100% normal. It's painful and uncomfortable to hold in and embarrassing to let out.

How do I feel emotionally? That is of course a tough question. The diagnoses has affected how I approach life, and I think the medication is changing the way I think too. I have a lot more ups and downs than I used to. One second I am upbeat and ready to tackle anything, the next I feel helpless and unmotivated. It's an emotional roller coaster. I feel a sense of urgency to get things done before my time comes, but then the other side of me says "what's the point?" The main thing is there is always something going on my head. Overall, I find myself being a more outgoing person and I am losing my inhibitions more easily. This is mostly a good thing for me as I was very shy growing up and uncomfortable in social situations. BUT, I am also afraid I might go overboard and lose friends because I speak my mind, or lose my job because I'll have a "I dont even care" attitude.



So am I really better? I dont know. How about you?

 

[Crohn's 35]

Wow sounds like you wrote MY story. I have way less painful gas, just by changing my diet, and like you I go go go, when I feel good because you know when the stupid rug is going to pull out from underneath you. I dont think that you dont care, you just feel worn out, and believe me we all feel that way. I am getting way less flares, and just trying not to eat the wrong foods, or not take my probiotics on time. You learn with your real friends who care, to tell them a bit but a casual friend you say I am fine. To your doctor you tell him how you feel right then. We all have been on the rollercoaster, everything you feel we all feel it sooner or later. Just getting your Crohns undercontrol is half the battle. Take care of you ok? Hang in there!

 

[imisspopcorn]

I am better.
Do I worry every day that I may not make it the bathroom in time? Yes
Do I still have pain? Occasionally....but I learned I'm gonna have pain whether I'm sitting on the couch or out with friends having a good time. So, I take chance and go out....I've come to realize that being distracted helps reduce the pain. I decided last year that I wasn't going to shut myself up....As long as there is a bathroom close, go for it.....If it gets to be too much you can always go home.

 

[farm]

I agree with IMP.

 

[krs2]

Thanks for the responses guys. The two things that kill me are the fatigue and the gas. Most days my eyes feel so heavy and a nice nap sounds like the best thing for me (and then the nap ruins my sleep and i get all screwed up!)

. I have way less painful gas, just by changing my diet

Well it seems like the gas got WORSE since I started taking meds. I had gas before but usually it was after I had a few meals in me I think the bacteria in my gut started eating at the undigested food. Now I have little to no D and I'm on basically the same diet, but the gas is like 10x worse and I dont know what to do...... I'm trying to eat healthy and it seems impossible with this disease!

btw, im on flagyl, pentasa, entocort and nexium plus iron and vitamin d supplements

 

[krs2]

Now that I think about it I think I am going to start cutting out milk. When I was pretty sick before being diagnosed, I cut out milk because I figured it wasnt helping at all. Then my GI had me do a lactose intolerance breath test and it came back negative for intolerance. So I decided I was going to start adding milk back into my diet because I love yogurt and a bowl of cereal in the morning. When I mention the gas to my doc, he says "have you done a lactose intolerance test?" and I have to remind him that I did and it came back negative. After that he really has nothing to offer.... should I cut out milk regardless of the test results?

 

[Crohn's 35]

Hi Krs, Milk and dairy products are not tolerated well with Crohnies, I havent had milk in 6 years, but I can tolerate yogurt, frozen yogurt and old cheese. Even lactose free milk, I cant use it either. There is soy, rice milk, and goats milk. I like the rice milk and I am NOT giving up my cereal. I can tolerate steel cut oats very well. This is the first trick to avoiding painful gas and that is dont eat and drink at the same time, it creates a nice battle ground for gas. When you do drink water or what ever, dont drink it cold or iced , dont gulp it and NO straws. I drink bottled water or just drink from my reverse osmosis tap. Try probiotics the highest you can get or afford, they stop the bacteria from creating gas. You try this for a week and tell me how you feel, but take the probiotics same time everyday! Good luck ok. I had such painful gas even a percocet wouldnt take it away. Hope this helps.

 

[krs2]

Hi Krs, Milk and dairy products are not tolerated well with Crohnies, I havent had milk in 6 years, but I can tolerate yogurt, frozen yogurt and old cheese. Even lactose free milk, I cant use it either. There is soy, rice milk, and goats milk. I like the rice milk and I am NOT giving up my cereal. I can tolerate steel cut oats very well. This is the first trick to avoiding painful gas and that is dont eat and drink at the same time, it creates a nice battle ground for gas. When you do drink water or what ever, dont drink it cold or iced , dont gulp it and NO straws. I drink bottled water or just drink from my reverse osmosis tap. Try probiotics the highest you can get or afford, they stop the bacteria from creating gas. You try this for a week and tell me how you feel, but take the probiotics same time everyday! Good luck ok. I had such painful gas even a percocet wouldnt take it away. Hope this helps.

What type of probiotic do you take jetta? Do you use a brand like digestive advantage or sustinex or do you use a vitamin brand like nature's bounty?

 

[Crohn's 35]

No, I have mine ordered and I understand you can get it at Walgreens? It is called VSL#3, some others are on extra strength which can be covered. I dont have coverage and not the double strength. I take 2 450 Billion probiotics, works for me and I avoided a 3rd surgery because of it. Can be costly but in my opinion you need a lot of good bacteria to make it work and watching your diet helps.