New to Forum...Just need a hug

[bwightman]

Hi everyone,

I'm new to the forum...I was diagnosed with Crohn's at the end of April. I actually spent my birthday in the hospital this year. Once I was diagnosed and put on Prednisone, I felt SO much better. It was like night and day...one day I was tired and miserable and could barely walk because my joints ached so badly, and the next morning (after the IV prednisone), it was like a complete 180. I felt so good and had so much energy!

Since then, though, it hasn't been all that great. I tapered off the Prednisone, finishing around July 4. I suffered from all the nasty side effects, sleeplessness, heartburn, mood swings, acne, weight gain, etc. and now that I'm off of it I have absolutely no energy and no appetite whatsoever. None. I feel like I could fall asleep at any moment. Going up stairs tires me out. Standing up to cook dinner makes me too tired to actually eat it. Plus, I was put on Asacol around July 4th also and it caused my hair to start falling out! My GI switched me to Pentasa on Friday, but it's going to take a few weeks apparently for the Asacol to leave my system.

Lately I've just been feeling so exhausted and overwhelmed and just...bad. All I want to do is sleep. My husband is being really supportive but I can tell he's stressed over everything as well and I just feel awful that I'm putting him through this. I'm really afraid that this is going to be the new "norm" and I'm going to be fatigued all the time. I really can't imagine going through life this tired and I would give anything to feel "normal" again. Is there hope somewhere or is this just how it's going to be?

Thanks for your support...I think having found a community of fellow Crohn's sufferers will help a lot...even if it's just to let me know that I'm not the only one.

 

[Isla]

Ya welcome to the forum, having a medical condition is hard to deal with - especially the ones that are incurable but the words that should be music to your ears is this one is manageable. You can manage Crohns but it isn't the same for everyone so you have to find what works for you!

BTW - You should invite your hubby on the forum, we have significant others of sufferers on here as well.

 

[teeny5]

Welcome to the forum! Hang in there. I have my good days and bad. I have been on a rollercoaster since my symptoms started in January. I was diagnosed in May. I feel good for a few days and then out of no where I feel sick again for a few days. Been trying to reduce stress but seems getting too tired physically makes me feel sick again too. Sometimes I feel like I just can't win.

I too have had my hair fall out on Asacol...good thing I have super thick hair! (Does anyone know if that is a common side effect...I will ask my GI next week)

I agree with Pen, take it one day at a time. I have learned that if I feel like doing something today...do it! I never know how I will feel tomorrow.

This forum has been great for me. I hope you get the support and info you need here too.

Oh and I almost forgot your hug! (((((HUG)))))

 

[mommy1st]

Welcome. Everything might seem a little stressful right now. It's alot of information all at once. For me it's a little different I was diagnosed at 10 years old so Crohns is all I know which is kind of sad to say. I'm glad your husband is so supportive a good support system is critical in getting through this. Everyone's Crohns is different some people go into remission rather quickly and others take awhile. I haven't been on this forum for a very long time, but it helps. You can talk to people who know exactely how your feeling so feel free to vent because someone is always there to help. Best of Luck

 

[Isla]

Hair falling out isn't listed as a side effect for Asacol, guess I am lucky though - it didn't happen to me and I am still taking it

 

[bwightman]

Hi everyone,

Thank you all for your kind words of support. I'm trying to take everything one day at a time, but it gets hard when you're not sure whether or not there's a light at the end of the tunnel. Right now I feel like I'm just slogging through this without much to look forward to. I hope it does get better. I've got my annual physical next week with my PCP and I'll ask about iron and B12 levels when they do bloodwork.

 

[james]

Ive had crohn's for almost two years now and it seems like with every flare it gets worse and even when im in remission its not as good as from the first flare. it seems progressive. is this typical of crohn's or does the medication just not work as good as it used to.

 

[bwightman]

Hi Pen,

What tricks are there to prevent hair loss? I've been off the Prednisone for 2 months now and it shows no signs of slowing down or stopping. I've basically stopped brushing it, and just wear it back in a ponytail. It's scary how much comes out in the shower and when I comb it out afterwards.

 

[james]

Where exactly is your crohns flaring?

Small intestine as far as i know. why do you ask?

 

[teeny5]

Hi Pen,

What tricks are there to prevent hair loss? I've been off the Prednisone for 2 months now and it shows no signs of slowing down or stopping. I've basically stopped brushing it, and just wear it back in a ponytail. It's scary how much comes out in the shower and when I comb it out afterwards.

I too have had hair loss...never been on Prednisone only Asacol. It is true you shouldn't tie your hair up it can cause it to pull out or break if it is brittle. I cut my hair shorter (cut of like 6 inches). I then got a good boars hair brush that is supposed to help distribute the oils from the roots to the hair. I use a leave in conditioner once a week and it seems to have gotten better. Not as dry and brittle as before. Not sure if the hair loss has subsided, but I see less in the shower it seems. It is scary to see handfulls come out everyday!

 

[bwightman]

I too have had hair loss...never been on Prednisone only Asacol. It is true you shouldn't tie your hair up it can cause it to pull out or break if it is brittle. I cut my hair shorter (cut of like 6 inches). I then got a good boars hair brush that is supposed to help distribute the oils from the roots to the hair. I use a leave in conditioner once a week and it seems to have gotten better. Not as dry and brittle as before. Not sure if the hair loss has subsided, but I see less in the shower it seems. It is scary to see handfulls come out everyday!

I know, it seems every time I even touch my hair more of it comes out. It's pretty long and I don't really want to cut it, but I guess I will if it's going to help. I really hate pulling out handfuls of it, especially after getting out of the shower. My doc switched me from Asacol to Pentasa about a week ago so hopefully it'll start getting better soon. I haven't really noticed any difference yet, regarding anything, since being switched to Pentasa, so maybe it's too soon to tell. I still have no appetite and have to force myself to eat. Blech.

 

[teeny5]

I have to force feed myself too...otherwise I could not eat for days it seems. Just hate the way I feel after I eat if I am flaring, but I bear through it just to try to keep the little bit of weight I do have on.

 

[AbstractDonut]

Small intestine as far as i know. why do you ask?

To me it seems flaring means different things to different people. Some people will call a flare the one day out of the week when they get crampy or have bad diarrhea, but in all actuality the inflammation is the same week out of week and they had just eaten something which got caught a bit in the system. I think of a flare as any time you have inflammation, whether you have symptoms or not. You are in remission when either medication or surgery completely rids you of inflammation.

And my way of looking at it you cannot always tell if you have inflammation from symptoms. And I'm saying this not as an authority, just hoping you describe how your flares or flare is going in greater detail.

 

[teeny5]

Oh man that means I have been flaring for months...

 

[AndyCrohnsPatient]

Hug. Yea I new to this and need support this is very hard to go through and I have done everything that they have thought of that im moving to a new doctor because they dont know what else to do. Prednisone does help but only in large amounts I have been on and off it but when im off or on a low dose i dont get relief so i think im one of those people who is depended on it but oh well. Welcome even though i just joined. Just need support to help my one foot in front of another.