Crohn's Disease Forum » Support Forum » I want to be me again...

04-09-2012, 05:48 PM   #1
Senior Member
Join Date: Mar 2011
Location: Colchester, United Kingdom
i want to be me again...

So its been awhile since iv posted on here, and things were going great! I went into total remission, and during that time i met my boyfriend, we have only been together 5months. The first 2 months i was still in remission, but i thought that gave me the ok to come off my meds, now i know that remission doesnt mean i dont need meds still!! the past few months i have been in and out of hosp, had a month off work (Still off now) and constantly being unwell (the usual crohns stuff).

I feel like iv lost who i am, all i seem to say to my boyfriend is how unwell i feel or that i cant go out because i dont feel well. He never says anything to make me feel bad, he has been very supportive but i still feel the need to say "remember i wasnt like this when we first met", because i dont want him to forget that i can be fun, and why he started to like me in the first place.

does anyone else feel like they arent them anymore? i know it wont be like this forever but it sure as heck feels like it right now

Dont know what id do without this forum!!!!

CD diagnosed '08 however GI recon iv had it since birth.
Prednisolone 40mg daily
Mercaptopurine 30mg daily
Tramadol (as much as i can somedays)
04-09-2012, 05:54 PM   #2
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

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I'm sorry you are going through a rough time. I can relate in telling someone I'm dating that it won't be like this forever. I can understand the urge to tell him for fear of losing him but also remember yourself that it will get better. Flares come and go and hopefully you will get to the bottom of this soon.

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04-09-2012, 06:12 PM   #3
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Trysha's Avatar
Join Date: Aug 2009

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You will feel better, it just takes time.
I think most of us feel the same as you at times, when it seems an unending struggle to get well and stay well.
But it will happen and hopefully soon for you.
Hugs and best wishes
04-09-2012, 06:19 PM   #4
Join Date: Oct 2011
I have been through what you are worried about. Many years ago I too was worried about how I would be perceived by the person I was dating. We have now been married for 23 years. She has seen me through many ups and downs. The latest was me recently(2 weeks ago) having a 6 hour surgery for a resection. She has commented that she really didnt know what to expect. I think the worse part was she didnt know what was happening with me during surgery as she was unable to see me for 13 hours just due to the difficulties I was undergoing with the surgery and post op.

Recovery has been slow. I myself feel very useless around the house but I know things will change. I have always been driven to get better. The hardest part i find is just the time it takes for the disease to get better or to change. Patience is the key. Easy to say but not always easy to follow.

If you are with someone that cares they will stay around. Be positive. It is a lot easier being around someone who is positive than someone who is complaining or always negative. I know this isnt easy but you will get through it. Take care.
04-09-2012, 06:31 PM   #5
Senior Member
Join Date: Mar 2011
Location: Colchester, United Kingdom
thanks guys, i just feel so tearful (not helped by the meds i guess).

I feel so angry at myself as its my fault i am in this flare again, if i hadnt stopped taking my meds then this wouldnt have happened, i could kick myself!!!! but i just needed to know that putting, what they call Toxic, medication into my body was really necessary.
04-09-2012, 07:01 PM   #6
Cross-stitch gal
Cross-stitch gal's Avatar
Join Date: Dec 2011
Location: Vancouver, Washington

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When my husband and I were first married, I was doing alright and went off my meds like you did. Eventually, I too was in a flare and I've been on my meds permanently since then. What Noguts & Brent said is true. I've been in a flare this time for about a year and a half and my husband has seen more than he's ever seen with me. Many times I've just been thankful for him to hold me. But, sometimes I still need to let him know that. Take it easy and hope this helps a little.
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday

UP Support Group
04-09-2012, 08:08 PM   #7
Join Date: Oct 2011
I wouldnt be too hard on yourself. There are times when I found the treatment worse than the disease itself. Testing whether the meds make a difference should be done with your doctor.

Getting down on yourself I found was easy to do when I first learned I had the disease. Too much thinking of what I was doing and relating it to how I felt. I have learned to just take each day as it comes. One day at a time.

To give you an example of my brilliant maneuver is last September I ate three bran muffins.....too seemed to trigger a partial blockage and me ending up in emerg at the hospital. Preventable? What did I learn......always watch my diet.....sometimes too much fiber isnt the best for me.

We all do things that are not the best. I have always found this disease to be one big experiment. There are days when you can do anything. The next day you can repeat what you did the day before and be very very ill. Who knows. Just dont get down on yourself. We all experience moments like you are going through.

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