One scared girl, just got diagnosed

[ACNewt]

Hello. My name is Alison, I'm 29 years old and I was officially diagnosed with Crohn's this past week. I had been having symptoms for months. Been to the Urgent Care a couple of times. Finally got a referral to a Gastro and had the colonoscopy. They found granulomas along with ulcers in my colon. I also had a CT scan and they found evidence of Crohn's in my terminal ileum. It's just nice to have a diagnosis after a lot of stress of figuring out why I am sick. Back in mid-August I went to the bathroom at work and the toilet was covered in blood and I had pain... Went to the ER right away. Haven't been to work since. It's been tough. Short term disability is a blessing but I haven't gotten the check yet so I am stressed with finances along with everything else. My gastro put me on Pentasa. I take 2 pills 4 times a day. I think its helping a bit... Hard to tell, I have only been on it 2 weeks. He hasn't put me on anything else, wants to see how this works first. Meanwhile still dealing with the flare up... Its going on almost 2 months, is that normal? Some days I feel almost normal and think about going back to work... the next day I am in bed all day and living by the toilet. Its frustrating. Right now I am on my period and its been HELL. The pain is horrible, I have had the worst weekend. I am fortunate to have the most supportive boyfriend who takes such great care of me. But I have been reading this forum the last week and I have to admit I am scared of this disease. And I don't know much about it but I am trying to learn. Also still trying to figure out food. I hardly eat. I have lost 17 pounds in a month. I am actually overweight to begin with so I actually am glad to see the weight loss but not this way.

I'm just really down. Still have so many questions. Just want to feel like a normal person again. I have noticed everyone else seems to be on prednisone... My GI did not put me on this, just the Pentasa. I also have a ton of lower back pain, almost like I have a kidney stone (I have had one before... wow, that was not fun.) So I am also taking Lortabs for pain.

Anyway, so glad to have this forum. Thanks for reading my rambling if you made it this far. I am just scared.

 

[tpd320]

Sorry to hear about your diagnoses. Scared the hell out of me when I found out. Had never even heard of it and didn't know if I would be able to go back to work or what to expect. I was clueless and scared to death. Don't really know why you were not put on Prednisone. That drug saved me. Before I took it, I could not function at all. But it is only meant to get a current flare under control and should be used for a short period of time due to all the side effects. It is your docs job to find the right combination of meds that work for you. It is sort of like a trial and error kind of thing. What works for me may not work for you and vice versa. I would definetly put in a call to your GI doc. You should not have to be in this type of pain. Either that or get a second opinion.

Hopefully the docs will eventually find the right mix of meds and help put you in and keep you in remmision. I was diagnosed in April of 09. I wasnt able to return to work until Sept. A large portion of that was due to surgery that I needed to have after soon being diagnosed. I am hopeful that my doc has found the right mix for me.

This disease can be managed for most folks now with the current meds on the market and it should only get better in the future. At least that is what I am hoping for. Don't hesitate. Call your doc. You have to get that pain under control and get your life back and go on living...

 

[georgiegirl]

Hi Alison, and welcome to the forum. Your story sounds very similar to mine, except you've obviously been hit harder than me. I was diagnosed just over a month ago, and the GI put me on just Pentasa to start with. He told me that was the first step, and has the least side effects. I'm now on Prednisone and Aza (Imuran) and a whole bucket load of vitamins and am starting to see some benefits. There can be some pretty serious side effects to these drugs, which is why they like to try the Pentasa first.

Be glad you have a supportive boyfriend, I know there are a lot of people here who haven't got that kind of support, and I can only imagine how hard it would be to explain this disease to someone you're dating...My hubby certainly isn't perfect but he has very good shoulders to cry on when the need arises!

As far as a 2 month flare, I think it's certainly possible. Some people on here seem to flare for a few days, and others for a hell of a lot longer than that. Everyone is different, as you'll see by reading posts. If you're really scared, call your GI and get back in there quick as you can. No need to add anxiety and extra stress to your situation!

Hope you feel better soon, and :hug:

 

[gypsigirl28]

hi Alison, welcome and I am glad you found the forum

 

[Rebecca85]

Hi Alison! Pentasa is a mild drug, mainly it stops you getting worse rather than making you better! I would definately speak to your doc and explain you are still in a lot of pain. Hopefully you can get some pred to calm things down, then the Pentasa will do it's job and prevent you flaring again. In the meantime, stick to a low residue diet as this will avoid hurting the ulcers. Www.crohnsforum.com/wiki/low-residue-diet

 

[DustyKat]

Hi Alison and :welcome:

I'm glad you found your way here. I agree with the fact that if the symptoms aren't settling you need to go back to the doctor or at least ring and ask him what sort of time frame you're looking at for some noticeable improvement. If you have passed it then you can tell him there and then it's not working. Please keep us posted on how you go. Good luck and welcome aboard!

Take care,
Dusty

 

[Dexky]

Welcome Alison!! I agree with all of the above. Pred could probably get this flare under control and then hopefully Pentasa would keep it that way. Good luck!!

 

[Astra]

Hi Alison
and welcome

I agree with the Pred, Pentasa is a prophylactic, a preventative to maintain, no good if you're flaring.
On a different note, you've mentioned periods, this is when my Crohns was at it's most horrific. I asked for a referral to gynae, they found endometriosis all over my bowels, bladder and uterus. I had an hysterectomy and a 'clean up'. My symptoms, besides the period cramps, were lower back pain too.
This is why I advocate that all lady Crohnies to tell gastro about period pains, and to tell gynae that you have Crohns, there can/may be a corellation.
An ultra sound scan will detect endos.
Glad you found us, we defo empathise!
lotsa luv
Joan xxx

 

[Sue-2009]

Hey Allison...Glad you found us...Hang in there...Hopefully...This med will work for you! I'll send some good vibes your way....S

 

[ACNewt]

You guys are awesome. Thank you so much for the warm welcome and advice. I tried to make an appointment with my GI (my next one isn't until Oct 27 and I don't think I can wait that long!) but he is booked solid... This is the very frustrating part as my insurance only allows me to go to certain doctors and since in my city specialists are rare it takes forever to get an appointment.

I'm scared I might have endometriosis. The realllllly bad pain is only during my period, I have always had bad cramps but on Crohns they're EXCRUCIATING. The thought of having to get a hysterectomy breaks my heart as one of my biggest dreams is to have a child... My gyno appointment isn't until 11/9! Ugh I hate that. Its all so far away...

The depression is tough too. I spend all day in bed. I feel all over achey even when the flare is not hitting me hard. Sometimes the hopelessness is overwhelming. I miss life.

Going to start Low Residue Diet today, hopefully that will get come nutrition in me. Weighed myself today, I have officially lost 20 pounds in a little over a month.

 

[Banhammer]

hi allison! I am new here as well! Hope all goes well with the medication!

 

[rottengut91]

I'm terribly sorry you're having such pain. I hope you get things squared away soon. I wouldn't want to have a hysterectomy either. Make sure you do your research on what your options would be. As many as 2/3 of performed hysterectomies are not necessary. This is definitely one of those times to take charge of your medical care. If you are not comfortable with hysterectomy at your age, urge the doctor to come up with alternatives.

 

[Astra]

Hiya Alison

I'm sorry, I should have said, I asked for a hysterectomy, it wasn't necessary! I had 2 children and was aged 37, so instead of leaving my uterus and cervix in, I asked for it all to be removed with my ovaries, where there was a fibroadenoma. Endometriosis can be removed without a hysterectomy, and your ovaries will be ok. My friend has just had endos removed after trying for 2 years to conceive, she's been given the green light now!
My periods were horrendous, I was in agony for 3 weeks in every month, even ovulating hurt! I have no regrets whatsoever!
I'm sorry if I scared you, Julie is right, a hysterectomy isn't necessary, I opted for it.
good luck, and get that referral to gynae.
Joan xxx

 

[bethany84]

Hi Alison! Welcome! I'm so glad you have found us! This place is just a fountain of information and opinions from those who can truely relate!! Definately remember though, as I discovered here, that everyones experience of the disease is different so get as much information as possible and if you're not happy with your treatment or if you are concerned then speak to your doctor and make sure your concerns are heard. Like many others here I have also found preds the answer to a flare up and I would imagine if pentasa wont keep you maintained alone aza or similar would probably be the next step. If you are suffering though and seeing no improvement get on the phone to that doc of yours!!

Thinking of you and sending big hugs to try and cheer you up!

Keep us posted! x

 

[ACNewt]

Thank you so much, everyone. This board is amazing. Especially today when I am feeling pretty alone in this fight.

 

[2thFairy]

Hi Alison! I'm new here too, but this is a wonderful place. Yesterday several people had me laughing all day just by talking about poo.... who would of thought of that? Hahaha! Today I am on a real downer, but am still finding comfort just checking in here and seeing what everybody is talking about. I have ulcerative colitis and am in the middle of a 3-month flare. This is the longest one yet, but my meds are being tweeked and I feel pretty confident that it will get settled soon.

Hang in there! You are not alone.