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First flare up and feeling down - hi :)

Hi,

After a few days of reading through posts on these forums, I have decided to introduce myself. I am here because I need the support from those who understand what I am going through (and also to vent :shifty-t:).

Background:
pains began six months ago. Diagnosed two months ago, via colonoscopy and CT, the day after my 22nd birthday. I have an abscess (lower-right), bleeding, perforation, infection, and swollen everything.
A week in hospital, 5 weeks on a most revolting diet of “Alitraq” (anyone use this?), with the goal of avoiding surgery. After five weeks, things seemed to improve greatly. But sometime after the doctor said, “okey, another two weeks of Alitraq, at least,” I broke down, switched into a half-liquid, half-low-residue diet. Immediately got worse. Now doctor says it is time for surgery.

Present day:
Do I have surgery? “We need to do everything in our power to avoid surgery.”
Okey, so how do I avoid surgery? “Go back on Alitraq.”
But how can I bring myself to restart this diet again? After five weeks on Alitraq the problem still wasn’t fixed.
Any other options? "Maybe."

I feel that I am in a lose-lose-lose situation.

I’m still learning what is considered a “basic flare up” or a “serious flare up”, so I don’t know where my situation lands on the scale of things…I just think that this “initiation” to Crohn’s-colitis has been...extra sucky.

On the whole I feel crummy. Barely eating. Don't know who to talk to. This food situation is driving me nuts. I don’t know how to deal with this ‘no healthy food’ situation. I have always been super healthy – salads, fruits, veggies…more than anything right now I could go for a tomato or an apple or a peach. (And it doesn’t help when some people care to point out: “crazy, isn’t it, that you have this disease…considering how health-conscious you are.” Well, great. Just great.)

I suppose just that I am typing this means that I am feeling a bit better (given that I've barely left my bed in a week), so that's a start :ysmile: I'm just frustrated. I'm supposed to be on a massive world travel trip right now. Instead I'm making daily rounds to doctors and when I get home I just want to sleep.

Thoughts? Thanks for reading. I think that was super mopey :eek:
 
Although I've never heard of alitraq it seem to be a formula similar to some others that have been prescribed for exclusive enteral nutrition or EEN. That is one first line treatment for CD so are steroids. Usually the GI starts the patient on a maintenance med as well such as an immunosuppressant like Imuran, 6mp or methotrexate or he prescribes a biologic like remicade or humira.

Some patents decide to do the formula by ng to avoid drinking it. My son would insert his ng tube each night take all the formula in while he slept then remove it the next morning before he started his day.

If you are uncomfortable with this GI then a second opinion might be an option. Sometimes when severe damage is involved surgery is needed. Make a list of your concerns for lack of options and treatments and have your GI address them.
 
Hi and welcome :welcome:

I'm sorry you're here but it's a good place to be if you have Crohn's. I think it's fair to say that your initiation has been extra sucky...although there are many ways that this disease can suck as many of us here have learned. But it's certainly not easy to be thrown in at the deep end when you're only getting to grips with what this disease means.

Do you know any details of the kind of surgery your doctor is proposing? Has your abscess gone?

If you haven't tried any meds (other than the Alitraq) then most doctors would consider that you still have a number of options to try before going to surgery (unless it's an emergency situation).

Biologics like Remicade and Humira work relatively quickly (timescale of a few weeks, sometimes less) whereas immunomodulators like azathioprine, 6mp and methotrexate take roughly three months to get to therapeutic levels.

EEN (drinking a formula like Alitraq exclusively) can start to work on inflammation in as little as a week, although the duration you need to be on an exclusive liquid diet is thought to be between 6 and 8 weeks. It is possible that you needed to be on EEN longer or that you relapsed immediately when you stopped but if you can't bear Alitraq there are other formulas that you may find more palatable (I quite like Modulen and Fortisip, though I don't know if those are available where you are) and as Clash suggested there is the possibility of having it via NG tube so you don't taste it.

Steroids also work quickly to get inflammation under control for a lot of patients and if you don't want to continue with EEN that may be another option for you. As Clash said though most patients need a maintenance treatment to stop them flaring again once the first line treatment has got them into remission.

Btw you're definitely welcome to vent on the forum. We all understand the need to do that! It does sound like you need some more answers from your GI and/or a consult with another doctor. Good luck!
 
Location
USA
Welcome!

I was also diagnosed a few months ago just before I turned 22. It sucks for sure. I'm on Humira and a prednisone taper right now, and feeling a lot better than I was. I'm not in remission yet, but I think I'm on my way, and I hope to be soon.

Personally, I would push for steroids if possible (unless you still have an infection), but that's just me. I would also try to find out WHY your doctor thinks surgery is a better option than other things like a biologic. Is it because of the abscess? I suspect it's because you have an abscess/infection, but if that's the case, I'm surprised they aren't pushing to get rid of that.

I definitely think you need to push your doctor for more answers, and as others have said, possibly get another opinion. It's important with this disease to be your own advocate.
 
Hi,
It's tough having to fight the medical system when you're so sick. So, I wonder if you have enough support. I am fortunate to have a caring spouse who went through everything with me, wrote down notes at doctor's appointments, bought me an iced latte I could drink through a straw when I had to lay on my stomach on the drive home after surgery. I think it can be hard for family and friends because they are so worried about you and probably as bewildered you are. So, I hope you have a 'champion' (or a team of champions) by your side. is there a Crohns/Colitis Chapter where you live?
 
Thank you for such helpful responses! I am so glad I decided to post :smile:

I should clarify a few things (my bad!):

I am on medications - was on prednisone (40mg and gradually lowered to 0) and pentasa, and now on imuran and antibiotics. We have been holding off on biologics due to fear of another disease reawakening (which has complicated matters) :eek2: .

I'll definitely look into other liquids, though I'd rather just go with tube feeding if it is possible/a good idea. I never imagined that I could prefer tube feeding to...eating. Nutty!

In this last week or two, when I immediately relapsed after stopping the liquid stuff I think I just had one of those "just do surgery and get it over with" moments (AKA a "I give up on life. I don't care what you do to me" moment). But surgery obviously has short and long term effects - I need to (and will) sit down and just do some more research/and ask my doctors (who have been amazing, I should also clarify that - it's only this last appointment that left me so frustrated and confused) more questions.

Thanks all :ghug:
 
Phoenixing, you can search you tube to see my insertion. We actually watched one of a nine year old show how she inserts her each night. It took a lot of the "unknown" away for my son.
 
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