My Story

[KWC0623]

My story

So my husband found this website for me and I am on here for him. I am still very ill and dont feel like doing much of anything. I told him id write up here so I am. Im very ill and feel like going back to the ed but I just wanted to say hi and thank u to everyone who has helped my husband out finding info. I actually went to the hostpital and spent a week there and now i had to go back bcuz they made me get sarcosis but stopping my steriods and not tappering htem off so its a very bad feeling i feel right now and hte docs say i just have to suffer through it till it goes away if the meds arent working. so its a bad time right now. But just wanted to say hi and dont know when ill be back on.

thanks again

 

[soupdragon69]

Hi KWC,

Well done you for the effort that must have taken you to post! Hang in there things will get better. Keep in touch when you can. We will always listen and be here ok?

Welcome to the forum! (((hugs)))

 

[Guest]

hiya KWC, and a big warm welcome to the forum

its easy to see how much it took for you to come in here, and i'm delighted you did. you have our friendship, our support, and if there is anything we can help with by way of advice or info, just yell - we are more or less 24 hour covered here, as our members span many countries.

for now, just treat yourself with kindness, and your body with patience.. this patch will pass. & we'll be here for you whenever you feel like popping by.

((hugs)) from me too.

 

[Jeff D.]

Welcome to the forum.

As Dingbat said we will support you. You can rant and yell if you have to so don't be nervous about doing so.

Remember this will pass in time so look towards the future and trudge on. Do what ever you need to do to get through this. Be patient and focus on whatever can possibly keep your mind off the pain although it is very hard, I know. Best of luck and come by and chat with us.

Hugs

 

[Isla]

Ya this disease certainly isn't fun. I couldn't take my daughter to the parade or anything yesterday because i was in too much pain. It sucks not being able to do what you what, need, or feel you should.

I noticed you said you came on the forum for him, but really the benefit of joining should be for you. It may seem that no one on here can understand or relate to you but many of us can. The emotional rollercoaster is much the same for everyone on here - or anyone going through medical problems in general.

 

[dks0111]

LOVE YOU MY HONEY. KISS, KISS

Sea state in the Norther Arabian Gulf is not agreeing with me. :ymad:

 

[KWC0623]

Thank you everyone for posting about my story especially you honey i love u too. Its very frustrating all around right now for me. I have spent 3 weeks in the hostpital on and off and the hospital here might as well of killed me bcuz they sent me into scarcosis or however u spell it. By sunday I will be off my psych drugs and soon I will be going to a new GI doctor on the 28 of this month. So maybe he can get my maintenance medicines right. My husband I dont think he wants me to be on anxiety meds but it helps me and I think it will help control my flares bcuz i think a lot of mine are stressed induced as well as this past one was my docs fault for putting me on benefiber when i am gluten intolereance and that contains wheat so..... put 2 and 2 together he screwed up. As far as everyone else what meds are yall on and are any of u on anxiety meds if u dont mind sharing. The psych doc tells me that I can just take them now and when i feel like i can handle things once im thruogh this flare and scarcosis and all i can get off then and take them as needed. Any suggestions? Ive tried the whole breathing thing that BS it doesnt help me makes me feel more anxious.. my husband doesnt want me on the meds I think he wants me to be able to cope with it without meds but im not sure I can bcuz since i was a kid ive always been a worry wort i stress over everything espcially my GF diet. I think he thinks ive given up and im taken the easy road but im not.. any help???? Thanks.. I love u DKS!

 

[Guest]

hi again KWC

re meds - i'm only on pred at the moment, although things may change soon for me.

i also take diazepam to help me sleep - not every night, prob 3 out of 7 nights at the moment.

i think anti-anxiety meds are something of a personal choice to everyone. if you have explored self-help avenues such as breathing/relaxation & they're not helping, or making you feel more anxious, then there is absolutely nothing wrong with asking for medication help - that's what these meds are invented for. used as a crutch to get you through bad times, they are great and certainly have their place.

maybe there is scope for combining the two therapies - ie: once your anti-anxiety meds have kicked in, and you're feeling more in control and less stressed, you could try to get to grips with relaxation & breathing exercises, then maybe in time (when your doc agrees) you'll feel able to reduce the meds bit by bit and keep on with the self-help...? just a thought

anyway, its great to see you in here again - it's lovely to have both of you as members

 

[Isla]

I agree with dingbat. I use yoga and therapy (behavior modification otherwise known as talk therapy) to deal with the emotional / mental side. I am totally against using more drugs than I absolutely need to I hate pills, but medication is definitely a personal choice. And if you feel that the meds are the only way to get and keep you level then you should take them no matter the stigma and no matter what anyone else judges you as. You are actually smart and brave to know where your limits are and what you need to be and feel healthy, mentally or otherwise.

 

[KWC0623]

Ok I feel really stupid I am still trying to get use to this forum thing.. It took me like an hr to find this post I made hahahaha... wheres my husband when I need him.Hes really good with computers and forums and things.. Does anyone else feel constanlty nausious and how long did it take to find a med that worked? I feel like nothing works... frustrating. I know its only been a year but I feel like this is just an aweful way to live. I have to plan everything and I feel like an inconvienence when my friends ask me to go places bcuz I have to plan all my meals ahead and they dont.. UGH.. Help..

 

[Jeff D.]

Yes this KWC this disease is terrible to live with. I'm sorry but I haven't had much problems with nausea. The only time I had it was when I was taking prednisone and I got so hungry that I would become nausious. I really hope that you can find the right treatment soon. May I ask what Crohn's meds are you on right now? Also, where in your intestines are you being effected by Crohn's?

 

[KWC0623]

Right now I am on Pentasa.. They started me on Lialda like 9 mths ago and then in May put me on the Pentasa bcuz the Lialda was no longer working. I dont think the Pentasa is working either. Its the same medicine just despinced a different way the doctor said. The Nexium doesnt work either so I stopped taking that since the 2-3 weeks I was in the hostpital I wasnt on it. I have a hidal hernia and an eroded esophogus so im not sure thats a good idea but like I said I go to my new doc on the 28th. I hope he starts all over. I want a new scope done I hate to do a new colonoscopy tho ahhhhhhhhhhhhhhhhhhh yuck I had to drink that stuff in the hostpital to do a CT scan and I threw up all back up. TMI sorry Has anyone found that pill u can take instead to do a colonoscopy?

Jeff D. I am not sure bcuz when I was first diagnosed my colon was really affected they first thought I had UC from that but then he did the Upper GI and found a lot of ulcers and the eroded esophogus and the hidal hernia and the blood work came back saying Crohns. When I was in the hostpital this last time they were freeaking idiots and know much of nothing about crohns so they had me jacked up on allll these medicines bcuz nothing was working they ct scan and the xrays showed nothing. They said it doesnt always show in a flare??? But I dunno if this matters that all my pain is always in my left side. 95% of the time. I am new at this and i hope my new doctor will be better. The main thing is I wake up on a daily basis nauscious and thats what gets me the most. I am not prego theyve checked many time and my husband is overseas for 5 more months. But I got off the pill while in the hostpital too bcuz they told me that wasnt good for my GI track either.. so that could be part of the problem too. I think my body is just so out of wack from all the meds i was on in the hostpital and coming off of them. They put me on psych drugs and the psychiatrist told me the other day she didnt think it was psycosis she thoguth it was maybe just an allergic reaction so now I have lost my memory for no dag on reason. I cant remember any of the second week of the hostpital. I remember ICU that one night and after that its blank. I dont remember coming home or anything....This past month has just been a mess!!

 

[Jeff D.]

Oh wow that's crazy. Hopefully it will just clear up on it's own when the meds where off. Best of luck