Had surgery dec 12 already back someone help me understand?

Hey to whoever reads
I was diagnosed with crohns jan'12 after 2 years of trying to find out what I had, I was tried on predisilone which didn't work, then I was put on humira which had too many side affects so it was decided I was going to have surgery. Unfortunately December 12 I had to have emergancy surgery due to a blockage, everything went well I recovered quick started eating again as I had drastic weight loss and very severe symptoms before.
Now it is back good and proper, everytime I go to the toilet my belly convulses like its tryin to be sick where in the end I am just sick! I cannot lay on my side without the awful pain of feeling like I need the toilet, I have had a recent follow up which I am awaiting an MRI so they can see how bad it is, but this time it is getting me severely depressed, my partner just doesn't understand and no one really does! I'm debating on wether to ask for them to remove the whole of my bowel but only being 20 I really don't want this to happen but I really don't think I have the strength to go through it all again??

Please I just need someone who understands and someone to talk to :(

They want to try me on azithioprine or something like that, but many of the meds don't mix well with me and this is the only one they can try, I'm just awaiting the scan then the results to try and become healthier again and under control.

It's just getting me really depressed everyday, I already suffer with anxiety and depression and everyday I'm
Just crying my eyes out :/ I know there is a lot of people out there with it but I feel so alone!

Thank you so much for your reply xx

These are not normal symptoms and your GI needs to know how sick you are and speed up decision making as to how best to help you. I'm so sorry you are feeling so ill. You may also need your depression treated, but start with the physical stuff first.

Hi Craymer,

I too really recommend that you strongly consider taking the Azathioprine. You just can't let this disease go unchecked. The risk of the disease causing you serious problems, is far more likely than any of the medications that are being used for treatment.

Try to get to your GI asap, and discuss this with him.

Well, I have a stoma, but I was in the unusual position of not being able to have a resection. I don't know if the surgeon will agree to give you a permanent stoma unless your entire colon is diseased. Usually they do a resection if they can, but sometimes they will create a temporary stoma after a resection to give things a better chance to heal.

You need to ask your specialist for a referral to a colorectal surgeon. They're the only people who can tell you if you are suitable for a stoma or not. GIs are notoriously cautious about surgery, so unless you're at death's door, they may try to put you off it. Better to talk to a surgeon about surgery.

I'd try a different antidepressant if the Mirtazipine isn't working. That said, antidepressants are so far from being an adequate treatment for depression, it's not funny. But you may as well as try them, because what else is there to do while being depressed? (Apart from go to the toilet if you have Crohn's.)

I hope you get the MRI soon.

Most people with Crohns suffer from Depressionand Anxiety, so you are not alone

Here is the deal, even thinking of removing any part of your interstine is insane, even if it is out of frustration.

You need to talk to your doctor about AGGRESSIVE treatment including 6MP, Prednisone, and Pentasa or Asacol.  You need to conside rHumira again (what do you mean you had trouble tolerating it?)

Also, you need to get a colonoscopy done, I do not buy that it is too unfomfortable...It is uncomfortable for all of us, but it is the only way to find out what is going on in your intestine.  They can use propofol to put you to sleep for the procedure. 

The question I have is how badly do you want to get better?

I went through 10 months of being on 60mgs of Prednisone,

You want to talk about side effects...but I did what I had to do to get better...and I am much better.

If you are in that much pain be agressive in taking control of getting better.

Get the colonoscopy and get on an aggressive treatment plan,

Good luck, I want you to get better quickly.

 

Shouting at someone to take their crohns mess and suck it up is not helpful. Everyone is different and people have serious reactions to things. We have some great medications now but let's not pretend they are perfect or that everyone can just marshal through a ten month course with ease. Clearly the poster is anxious and has other ongoing health concerns.

How can you say im not willing to do what it takes? Yes you have this illness as well and I do not doubt for a moment you have been through a lot with it!

Believe from finding out I had crohns in January 2012 to then having all these medicines, scans, injections and then onto having surgery in December 2012 it is a lot to deal with!

& my depression is an ongoing illness I have suffered with for 6 years, not because I feel a "victim" of this illness, there is a lot worse people out there fighting for their lives and believe me I do not feel like a victim, I don't sit and feel sorry for myself I try my absolute hardest to get on with my life any way I can!

As stated in my previous post I have another health issue which I again do not wish to disclose, and steroids affect your immune system which reacted with my other medicines, so it was a no win situation, either way it was making me ill! I have happily tried & started taking this budesonide steroids for a period of time until they can see how much inflammation is there! Yes I maybe be a bit high matinece when it comes to a colonoscopy but everyone deals with pains differently, and if I can not simply stand the pressure, pain or feeling then their is no point in wasting an appointment that some other ill person could be using, when there are other ways to determine how much is inflamed! My specialist has been through all this with me so I know what to expect & have! Not everyone is the same...

I am not in any way at all trying to be rude towards you as I'm not that kind of person but please just dont "assume" things!

Depression is also an illness.. And so is anxiety and as I have been suffering with it for 6 years I'm sure having crohns is going to get me feeling low in myself but I take my meds and speak to someone so there isn't a lot more I can do, I came on here for some advice and a little re assuring not to be judged.. As we all have the same illness just everyone is different!
Sorry

I hear what you are saying Craymer. What sedation have you tried with the colonoscopy, there are different things they can do and if you talk with your gastro doctor, or get a second opinion, you may arrive at a solution that is workable. Colonoscopies are important for crohns patients so if I were you, I would talk with as many docs as you can about it to a) find out why it is such a problem for you----there could well be a medical reason and b) identify some options. How do you handle your scans and the contrast dyes?

Thankfully, I dont have too hard a time with the colonoscopies. My only complaint is I get a but dehydrated with the prep and that makes my heart race. In my last colonoscopy though, they couldn't give me any benzos because one of the doctor's thought I was allergic, so they only gave me one half of the sedation. Boy was that uncomfortable!

Scans have been harder for me, and I sometimes need to get premedication before taking the dye (no problem with the dye used for MRIs though).

This is definitely not an easy disease, and it is made worse by the fact that many of the screenings they use also contribute to our discomfort and anxiety. I hope things get better for you.

I am happy at the moment taking the steroids I have been put on to try until they can determine the best kind of medication I need.

Everyone on here suffers with the same illness, everyone deals with things differently, and all medications work different on every person, no one can state that they will all work the same! Because if that was the case then they would not still be researching new medicines to control this disease!

Some may only suffer with crohns and other may have many other health problems as well so everything will be different.

Yes I admit I'm young and not all that clued up, but since being diagnosed I have done a lot of research, yes my diet may not help but being a 20 year old that lived of take away, smoked, went out drinking basically doing what a normal teenager of today does I think I have done well to quit smoking, cook proper meals, I don't go out and get "hammered" I try my absolute hardest to help myself! And even though it might not be much I am proud of myself to get that far! As many would say "**** it" and not care about consequences!!

Thank you to all that have been giving me advice and trying to help! But if one wants to judge then that is upto you, good luck with controlling your disease but please remember everyone is not the same we are all different!

They have only prescribed me budesonide as quick form of relief as recently I have been suffering with sickness, going to the toilet a lot and loss of appetite, the original plan was to have this MRI then possibly try me on azithioprine or surgery depending on the amount on inflammation! He put me on budesonide as it would work quicker and might relieve some of my symptoms it isn't a long term thing. He said that budesonide aren't as strong as pred, and because of my reactions and other health issues bud shouldn't be as bad on me, I am still awaiting an appointment for this MRI to then determine the best form of treatment.

& sorry the previous post was most certainly not aimed at you! I am very grateful for your advice and help x

Gastro? But he's the specialist for crohns in the gastro department

Thank you, I'm taking 3 for 28 days then 2 for 28 days then 1 for 28 days & by then they should have determined what course of treatment is the best for me but as I'm a tricky patient I think it's hard for them really lol :) there's always gotta be 1 (that's me) haa!

But I gotta give it to them they really do try with me

I used to live in Brighton and that hospital just chucked me tramadol and sent me home without trying to find out, then I moved upto barnsley and within a year they found out at first they thought ibs then tested me for celiac then because of all my admissions one final doctor was adamant it was crohns then tested me and he was right

So they have been good to me