Needing to Vent Some

[Daunting]

Sorry, just needing a place to vent.

It has been a long road thus far. On and Off diagnosis of Crohns since 2010, as of now the doctor I am seeing is 100% sure I have it and has started to give me B12 injections as my B12 is severely low. In October I was give VSL #3 packets and I felt great until December, than was placed on 40mg of Prednisone and had a hard time coming off of them. I have now been prednisone free for 5 days but started Entocort 9mg 3 weeks ago. For the past few weeks I have been having pain and urgency.
Bloating and never any consistency. I never feel the same way twice, I am so fed up. I have a great husband, great job, great family and I really don't feel nervous. I am more fed up than nervous. I have not had an accident except for when I had the stupid stomach flu, but what if it wasn't the stomach flu. My inflammation isn't suppose to be too bad, so why haven't I stabilized as of yet. Now what happens, what is next to try. Why hasn't the entocort started working it has been 3 weeks. Does the entocort not reach where the my inflammation is located. What is the stupid problem, 2 years ago the entocort made me feel great. I am so scared that my next step will be humira and honestly I cannot afford that at this time, my husband is on his first of a two year college course. and I know the humira is something around 1900 for two shots. Sure I have coverage but it will only cover 80%, so that leaves me about 660, But I don't get it, if the inflammation I have isn't that bad why isn't it working yet. Should I ask him to add pentasa or something else. I really don't know. All I know is on my last visit he was as perplexed as I am. Sometimes I start gurgling and it never stops and it wants to push everything out of me.

Why did this happen, there is no one in my family that has anything similar that I am aware of. I am the only one. I keep thinking of what a terrible life remains left for me.. I like to see some beeping consistency from one day to another. I'd like to see remission.

 

[Jim (POPS)]

Daunting,
I'm so sorry you are going through all of this. I felt the same as you not so long ago. The best thing I can say is slow down, stress can add alot to your crohns and make it worse.

I never thought that I would get well again but I have. It takes some time to get there sometimes. Keep your head up and keep coming around here for support.

Keep us up to date .

Jim (POPS)

 

[Daunting]

Thanks Jim(POPS)


I am sorry for the vent.
I have been pretty sane as of lately and have been dealing with this very well, but unfortunately a person can only handle so much. And we all have a breaking point, and I think mine is fast approaching, it has been December since I have had a good good period and it is so desperately due.

 

[purdueCrohns]

If they do a colonoscopy, they should be able to biopsy the problem areas and get a more definitive diagnosis. I would make sure they give you a certain diagnosis before you try something like humira or remicade

 

[Daunting]

Thanks,

However I have gone through a colonoscopy last September and he feels it is too soon to go through another. I was thinking I doubt he would go for the Humira first, a friend of mind has the same doctor and said that she was placed on Imuran first. unfortunately everyone is different, need to wait first. Sigh.

 

[purdueCrohns]

you could always get a second opinion if you aren't comfortable. Are you in the US?

 

[DougUte]

Daunting, this disease sucks.

If you find you have to do a biologic, like Humira or Remicade, then you will find the companies have programs to cut down the costs. My Humira copay is $5.00 a month.Their program covers the remainder of the copay.

 

[Honey]

Hi there,and welcome
Once you get a proper diagnosis that it is Crohns, it will help. The uncertainy can make you feel unsettled. Crohns is a difficult disease and it takes time to diagnose and to find the right meds that suit you. Meds did not work for me, but I am now doing well on Infliximab infusions. I hope you start to feel better soon. Let me know how you are. rosette1:

 

[Daunting]

Well this morning. I woke up ready to go to work and my intestines are just gurgling really bad. Usually for me this is a really bad sign. So I'm staying home from work. I have a gi apt tonight so will see what he says.

 

[Honey]

Hi there,
I understand : I got caught out one day when I went out and my tummy was rumbling away. You know yourself!! Have a good rest and do not worry. I hope all improves for you soon.:bigwave:

 

[Daunting]

Well my dr visit wasn't too too bad. He is really nice as usual doesn't understand why I'm still not feeling well. He said that my next option is the big medicines such as imuran or humira. He wants me to stay on entocort right now and try a probiotic vsl 3. So I ordered it from the pharmacist it is a special order it will be here on Monday. I really doubt it will work. He doesn't like the idea I am taking lomotil all the time but it is the only thing that seems to help me. I really doesn't understand what is going on. During my colonoscopy I didn't really have that much inflammation I should t be feeling like this. He wants to see me in two weeks again not going to happen going to book an apt for him next week again and ask for the imuran I that is the only thing that will work why not. I want my life back. I want to cry so much right now.

 

[purdueCrohns]

Probiotics make a huge difference for me. I actually have a yogurt drawer in my fridge

I would also consider folic acid and Vitamin D supplementation. They are great supporters for primary medications.

 

[Daunting]

Yes I will try the probiotics but it is not my first time.

I need to know what is going on.

 

[Daunting]

How I need to vent AGAIN

well Here I am again needing to vent

I am so depressed at the moment, I just want to cry and cry and cry. He wanted me to try not to use the lomotil to see how I do, well its been two days now and everything just wants to go right through me. I am still on entocort 9mg since May 21 and what good has that done me. Nothing. I feel absolutely no relief from it. I woke up this morning relatively good until about an hour after felt like my left side was having a conniption, seriously shaky and than the urgency hit, I think I went about 7 times within a short period of time, I am not hungry, I did have some chicken about an hour ago and I feel that will be revisiting me again. I am so fed up, why isn't any of the medications working for me, ive been told I do not have a lot of inflammation so what is going on. I know it is a possibility it is IBS, but isn't there anything out there that will work. I am just fed up. Its been too long now. I have been in this flare since January. How can anyone have a life with this, I have a great job, great husband . Why did I get this, I AM FED UP. I cant go out and I cant go to work I am terrified to leave my house at times.
To be honest I think I need some time off again. A mental break is imminent if not.
He is thinking of giving me some Imuran to try next, not sure about it and that scares me too, even though our good friend who is a pharmacist said that he would prefer being on Imuran than prednisone since prednisone can be so harmful to the body and bones, he said as long as I am watched while on Imuran I should be find. He does think the specialist may put me back on prednisone at the same time as Imuran until it starts to work.
And to be honest with everyone and myself, what scares me the most is at the end of 2010 I felt like this and it took me over a year to start to feel better. A whole year. Last night when I spoke to him, I had asked him if he thought I had inflammation higher up than what we had suspected and he had said No. So what is going on. Why cant anyone answer me. Right now it feels like I have the stomach flu even though I don't.

 

[purdueCrohns]

You got what it takes! Pretty soon you'll be talking about how you got through this and you're total badass because of it.

I would start with getting a second opinion from another doctor. Your doctor's lack of urgency seems like it is not in your best interest.

 

[Daunting]

To be honest, this is my 3rd doctor... the only one that felt it was actually crohns. He believes there is something going on down there and I thank him for that. My next apt is next Wednesday and I will mention that we need to try something else. I know he is afraid to put me on something stronger as it could potentionally hurt me but I want my life back.

 

[mwkwmn]

Daunting I am so sorry you are going through these tough times. With the disease we can feel good one minute and horrible shortly after. I hope you are able to get the medications you need to help put you in remission. The med companies have financial assistance I would check that out to see if they can help you afford the medication. Good luck to you and hope you get to feeling better soon.

 

[Daunting]

Thank you,

Yes I have looked into it just for comfort purposes. And found out that in Canada Humira would cost around 60 per two shots

Any way, I am considering now taking a few weeks off work for me. The doctor wants me to try Metamucil or librax or something. I am so depressed inside right now and its not helping. I think I need to just close my eyes and relax.

 

[Honey]

Hi there,
Be kind to yourself just now whilst you are going through the difficulties of this illness!! Take time off and rest when you can. I hope treatment goes well for you and you feel better soon. Let me know how you are doing. Best wishes.

 

[Daunting]

Thank you Honey.


It is so hard right now I feel as if things are falling apart.

This is really hard, I envy all of those who are strong and are having success, I really wish I was one of them right now.

 

[Honey]

Hi there,
It is natural to get upset at times. Dealing with all the tests and changes in treatment is no mean task!!!! I shed a few tears behind the scenes too,before and after my many hospital appointments. You will get through it and when medication is sorted, feel a lot better. I promise, I do!! Rest when you can as tiredness too makes you less able to cope. Thinking of you. Let me know how you are.anda-wave-t:

 

[Daunting]

Hi Honey

You wouldn't believe how much I love Pandas and see that little one wave made me smile

I am really scared that I no longer have a life and future ahead of me. Always sick and running to the loo, the doctor and the hospital is a hard way to live. I do not plan on giving up but sometimes I wonder if I can actually make it. How many of us can't work because of the disease, how many can't leave the house, how many of us are constantly depressed. Even our families sometimes find it hard to cope with us. There is not enough success stories out there to cheer you up at times. I guess what I am saying is I'd love to see a good few years of remission. But than again, most people of heard of says that after there remission things get worse from that point and usually surgery is required.

Fun how the universe plays games with us..

 

[Lenatilde]

Daunting - I am feeling the same... I have been off work for weeks as my job requires a working brain, which in turn requires food. I've lost close to 40 pounds in a very short time. I have my first GI appointment on Friday - for a flexi sigmoidoscopy. Today I'm letting my cat keep me company in bed, and my husband checks in with me through the day. But it's hard on him, too - he's scared, as I am. I am as yet undiagnosed.

Know this - I'm thinking of you and sending complete-stranger-love - hang in there; we will be just fine

xLT

 

[Daunting]

Hi there Lenatilde

I do hope you have a quick diagnosis, it took me 3 years and hundreds of tests. Knowing what it was - was a big relief, even though I know the road a head is lined with very large potholes. I know I am not the one to be giving out advise as I am still struggling and honestly do not have much hope for myself, I am hoping that things will change , they must

 

[Honey]

Hi there, Good morning.
I have been attending the hospital the last 3 years. After many meds which did not work or made me sick, I am now on 8 weekly Infliximab infusions. The inflammation is down and I am feeling better. I am not in remission but would love to be too!!! So, I do understand your fears. I do not want surgery either. It would be a resection if I stopped responding to treatment,I asked! Full knowledge of your condition helps you cope. Ask questions and talk of your fears to your Consultant. It helped me to do that. I do hope you are feeling stronger today. Keep in touch.anda:

 

[Daunting]

HEY.. I LOVE THAT PANDA

Just got back from the hospital had my Lactose test, man o man do I ever feel like a pin cushion, they picked me 6 time three on each arm, 30 minutes apart. Than I went to see my GP who has prescribed me Efexxor to replace my paxil and has taken me off for 4 weeks. 4 weeks of rest.
Today was more pain than diarrhea, took a lomotil last night as I knew I would be going to the hospital and didn't want to be running all morning. Have another apt with my Gi on Wednesday, I am happy I am being followed up but I am just discouraged that nothing is helping me.

Times can be tough, but if we stick together we can do this.

 

[Honey]

Hi there,
I understand, it is very discouraging when meds do not work or make you feel sicker!!! I am glad to hear you sounding more positive as you know you are being followed up. As I said before, having a Doctor who is understanding and caring is half the battle. You need all the support you can get to see you through the difficult times!!!
This forum is great for the support and friendship from fellow sufferers. Let me know how you are doing?