My First Post ..

[Jenamonkey]

Hi,

First of all, I'm Jenn. I'm 33 years old, married, and live in Austin, TX. I joined this group in the hopes that talking to people with similar issues would help me deal with my Crohn's. I was diagnosed September 2010, following a bachelorette party that ended in a trip to the ER. I thought I just had really really really excrutiating gas, maybe a touch of food poisoning, but after they did all kinds of xrays and ultrasounds the ER doc decided to admit me to the hospital. I was there for 2 days for observation and they suspected I had Crohn's and some type of infection. Once I was released I made an appt with a GI and had a colonoscopy, which confirmed the original diagnosis of Crohn's. I started out on Pentasa & Entocort, but moved up to Prednisone in December when it was obvious the other two weren't working. I felt awesome on the Prednisone (besides gaining 30 lbs in a little over 2 months)! I had real energy throughout the weeks for the first time in a long time. The pain stopped and I thought I was in remission. I took my last Prednisone pill on NYE, and the Crohn's symptoms were back within about 2-3 weeks.

At this point, I decided to try a different GI. She met with me, ordered a set of barium xrays and a lot of bloodwork, and put me on the max dosage for Pentasa and Entocort. The barium xrays showed that my intestines were still really irritated and inflamed. That was about 3 weeks ago, and I've actually gotten worse since then. I saw her again today, and she wants to put me on a longer dose of Prednisone (40 mg a day for a few weeks, then tapering slowly) and also start me on Remicade. I am really upset about the possibility of taking Prednisone again. I'm just now working off some of the weight I gained over Christmas, I can't imagine gaining even MORE weight. That causes me such a huge amount of stress, I don't know if it's even worth taking. I asked her if we could skip it, told her that I was extremely against taking it again, but she seemed really convinced that I needed the Prednisone. I'm researching the Remicade right now, and if anyone who's taken it has any advice it would be greatly appreciated.

So far, my biggest issue w/ Crohn's is the chronic fatigue. I am exhausted two to three days out of the week when I'm having a flare. I have constant pain in my lower right hand side, and once every two weeks or so I get so bloated, with my stomach being crazy distended and with shooting pains all over, I just lay in bed with my heating pad all day. When I get so tired, i don't know if I should just suck it up and push through it, or give my body the rest.

I don't understand why this came up now, at 33. I get mentally that it is what it is, but I'm having a lot of issues with it emotionally. Me and my husband are about to celebrate our 2 year anniversary and my doctor's have pretty much said "don't get pregnant", which has given me a lot of anxiety. I know I need to be healthy before we have kids, but it's still upsetting. I've talked to my doctor, and a few friend's of mine that are doctors, about getting pregnant on Remicade and it seems like the risks of the meds are much smaller than the risk of getting pregnant with Crohn's.

I guess it's also taken me a long time to come to terms with the fact that Crohn's is a pretty serious disease. It's not something that is ever going away, and I'm pretty much going to have to deal with it for the rest of my life. It's just hard to get your head wrapped around it sometimes. Add in all the conflicting information out there and it's overwhelming.


Anyway, I'm looking forward to talking with you all. I hope I'll be able to help others in the future! I'm going to end my intro rant now, before I come across as a complete Negative Nell.

Happy Monday!

Jenn

 

[bruscar]

Wow Jen its a small world,

Hi By the way, i am in Ireland and have an ol school mate of mine that lives in Texas too.

Anyway Back to business, ssorry that you are going through this crappy process but also glad you came here, and you are very welcome.

Try to get your head in a good place, things will take as long as they take and everthing happens for a reason, i know i know its a pig.

i AM A LOT FURTHER DOWN THE ROAD THAN YOU BUT AM FACING ANOTHER OPERATION IN THE NEAR FUTURE . . . .Sorry caps was on and my typing is hurrendous so i can't go back to do it all again.

Look Jen I wish you all the very best of luck , health and lots of babies.

Big Hugs

Bruscar

 

[Jenamonkey]

Thanks Bruscar! When were you first diagnosed? I haven't had the most typical symptoms, so I guess I kept thinking maybe it wasn't REALLY Crohn's. I've got all the pain related to it though, just not the 20 trips to the bathroom a day. Oh and do people really lose weight with this disease?! I've done nothing but gain weight!!

P.S. Your friend in Texas is smart! The weather is fantastic here most of the time and it's just a nice place to live. Although I have heard that Ireland is beautiful as well. My husband is Irish and we've always talked about making a trip. Someday!

 

[Crohnsian]

Hi Jenn and welcome - sorry to hear ur having a hard time coming to terms with ur diagnosis and i hope u get some relief from your flare soon. Weight loss goes with the territory im afraid, its the pred thats adding the pounds atm...

All the best

Ian

 

[MADiMarc]

Jen,
Hi! Well, most people do loose weight but not all. Some people gain weight & not only from the pred. The tiredness is part of it too. I really hate that part! Like you, I loved the benefit of limitless energy with pred. I hated everything else though! But as my family says better pred then dead (sick, I know).

I can't give you any advise on the pregnancy issue. Others on this forum have had successful outcomes. I know Entocort causes major problems with birth defects because that was the first thing mentioned when I was put on it. It was stressed very clearly by my doctor...over & over again.

Yeah, conflicting information is very annoying, I know. All I can tell you is that every single person with Crohn's is different then every single other person with Crohn's. I can eat tomatoes, others cannot. Sometimes I can drink a bit of milk, sometimes the sight of it makes my stomach hurt. It is the most frustrating thing!

You didn't rant. Come on back. Oh, check out the sub forums. There is one called "venting". There is also one for diet & fitness. I read that one a bunch but as I am a gold metal winning couch potato, I don't say much!

Michele

 

[Keona]

Hey Jenn
I hear you on the complete exhaustion. I use to be a marathon runner with tons of energy -- I couldnt sit for very long...always walking or socializing... now I lay on my couch a lot and have zero energy most days out of the week. Just wanted you to know that you are not alone.
There are a lot of women on here who are currently pregnant are have had children while having Crohns so please keep that in mind. You have time
Take care and I hope your remicade works for you
welcome to the forum

 

[xJillx]

Hi Jenn and welcome! I felt the exact same way that my diagnosis came out of nowhere. I was diagnosed after a colonoscopy a few months before turning 27. I had been healthy my whole life up until a few months prior. It scary how quickly my life changed. And you are right, it takes time to accept you will have this disease forever. I still struggle with it. And, similarly, I am so stressed that this has happened just in time with when my husband and I are thinking of starting a family. Starting a family is a big decision that takes a lot of planning, and it is even more difficult when you have Crohn's. But I hope Remicade with get your Crohn's undercontrol and quickly, so you can start your family when you are ready. Good luck!

 

[Jer's Girl]

Hi Jenn! A lot of Crohnies gain weight, you are not alone! It is really a misconception that all Crohnies are skinny, and it is one that has hurt a lot of people while they were trying to get diagnosed. Many Crohnies are thin if they are unable to eat for long periods of time (duh), but that is not everyones problem! I have been both a skin and bones Crohnie, and a chubby Crohnie. While I was on pred, I was both (fat head, tiny body)!

I'd say just try to stay on the pred while you are first starting the Remicade, then start to tapper off as soon as your Drs let you. The Remicade alone may be enough to get you into remission. I love Remicade! It truly is a miracle drug for some people. I hope it is for you too!

Also, lots of women get pregnant and stay on Remicade and have healthy pregnancies. I agree that you should try and wait until you are healthy enough to carry a baby, but that might be sooner than you think with the Remicade! Lots of woman say that they were symptom free for some reason while they are pregnant.

Welcome to the forum! You will learn a lot here.

 

[ameslouise]

Hi Jenn and welcome!

We have all been there with the prednisone. We hate to love it and love to hate it. It makes things so much better but the side effects are unbearable. The bottom line is - you need it to keep things in check until you find a long term solution that works for you, like Remicade or Humira. Buckle down, chin up and take the pred. You can deal with losing the weight later. It's been a lifesaver for many on this forum, myself included.

Emotionally we have all been there, too. They don't tell you in the brochure that Crohn's can really mess you up mentally. It's very difficult to accept the dx of a chronic disease. But the pain, the unpredictability, the accidents - they can really beat you down mentally. You will learn to deal with it all over time. Don't be afraid to ask for anti-anxiety meds - I am a big proponent of "better living through chemicals" and if you need a little something to help you get over the hump, don't be discouraged by that!

You will find great support here and lots of very knowledgeable people. Honestly, this forum is the best part about having Crohn's!

- Amy

 

[Sunshine90]

Hi Jenn
Im also from ireland great to see what an international forum this truly is !! It sounds like things have been really tough on you ... im 20 yrs old and recently diagnosed ... I ve suffered constantly with chronic fatigue literally spending the day in bed unable to move , for years was assumed i was lazy/hypochondriac etc . This disease has proven itself to be so frustrating friends and family dont really understand ...people dont get it when you have NO energy to do anything people automatically assume u just couldnt be bothered so sick of trying to come up with excuses to not go places that i have very little social life atm ! Only just starting on etocort in a few days so i guess ill have to c how it goes....ur right it is a serious lifelong illness im not ttly accepting that just yet .

Sorry for such a long post im a newbie to this and hoping that talking with every1 here wil help me to gain some positivity/perspective.

Best of luck ...look forward to hearing how every1 s doing in the future

 

[Jenamonkey]

Thank you thank you, you wonderful people!

I am sitting here at work tearing up reading all your wonderful responses. The emotional rollercoaster of accepting that I have this chronic disease has been the worst part, and hearing from so many of you that have been through this same stage of acceptance really makes a difference. My head knows that this is for real, but there's still a part of me that just hasn't accepted it. I keep thinking that my symptoms aren't typical, they aren't as severe as a lot of peoples, so maybe I don't really need all these crazy drugs (Pentasa, Entocort and now Prednisone, soon to be Remicade). I keep wondering if I could stop all the meds and focus on reducing my stress and healthy eating, that I could manage it naturally. Hearing from you all has reassured me immensely that how I am feeling right now (overwhelmed, depressed, disbelieving) really IS just a stage and it's something a lot of people go through. I don't necessarily see the light at the end of the tunnel, but I believe it's there.

THANK YOU! :award2:

 

[Astra]

Hiya Jenn
and welcome

The light is there luv, you've just not found it yet! It takes time to adjust to this horrid disease, but it will come, honest! Take that from an old Crohnie!
And, we're here to help you and support you through it.
lotsa luv
Joan xxx

 

[Jenamonkey]

Thanks Joan!