Advice on next step

[Marx]

Hi everyone,

I'm a 22 year old student and a crohnie! I was diagnosed officially about a year and a half ago, but I'm pretty sure I've bad this since around 17. I was initially put on budesonide and aza and that relatively did the trick up until September of this year where I suffered a huge flare up which still hasn't calmed down. I'm now on prednisolone and antibiotics but am suffering everyday with pains in my stomach and lower back. All I eat is low residue plain food and am losing weight. I'm okayish one day and bad the next. I can't go on like this. I keep seeing my GI consultant but he just takes countless blood tests and tells me to complete my course of pred. (Which obviously isn't working after 2 weeks)

What shall I do next?

I'm seriously considering surgery just so I can live life again even if its for a short while. I hate waking up feeling sick and worried about what I'm gonna eat. Also, I badly wanna gain weight, I'm so skinny and that makes me very unconfident and paranoid.

This is also affecting my studies big time!

My crohns is in the ileum and its about 15cm they reckon.

 

[SarahBear]

Hello! Welcome to the forum.

I'm sorry to hear you're not feeling well. Are you still taking the Aza? Has your doctor mentioned adding or switching to anything else? Have you considered speaking with a new doctor? It doesn't sound like you're communicating well with this one.

If you can get the same results without surgery, you're probably better off that way. It sounds as if a change in medications might be necessary for that to happen, though. Has the pred helped at all? Changed anything? Are you having any side effects?

I'm sorry to hear it's effecting your studies - I'm dealing with that too. It can be difficult!

 

[Marx]

Thank you!!!

Yes I'm still on the aza 100mg (which I completely forgot to take the last 2 days lol)
Not my consultant but when I met with one of the doctors on his team he flirted with the idea of infliximab or possible surgery. Although when I saw my consultant after, he didn't mention those and just said to finish my course of pred tapering off 5mg every week. But after 2 weeks I should have seen an improvement. If anything, the Budesonide worked decent for about a year until I had the last flare up and they took me off it and switched to pred.

How easy is it to change doctors? Would that mean doing the various tests all over again?

I really don't want to do surgery but if it will mean I get my life back, I'm willing to do anything right now. My university is going to go down the drain, I broke up with my girlfriend, I'm always grumpy and can't even plan my day cos my stomach has its own plans. And I've totally lost confidence with all the weight loss.

I don't think I'm having any side effects on the pred, not that I've noticed anyway.

Thanks for your kind words! It's SO nice to have someone understand what I'm going through. Most people just make me feel as if I'm over exaggerating.

 

[SarahBear]

Our healthcare systems are different, so I'm not entirely sure what you would need to go through to see a new doctor. It's unlikely you would need to redo any tests - your medical records should be sent to the new doctor. Could you request to see the other doctor you met with before? You might need to call their office and ask.

Can you take medical leave from university? We can do that here, if our doctor agrees. We lose all the work we put into the semester, but the negative grades no longer count against us. The semester is basically just erased. If not, it still might help you to take some time off if at all possible. Stress often aggravates stomach problems, so eliminating as much of it as you can until you're regularly feeling well again could help. I understand that this isn't always an option, though.

What symptoms are you having with this flare?

You're certainly welcome.

 

[KayleighMeek]

Hello
Sorry you are having such a horrible time and it's not right that the steroids are taking so long and that the GI is not doing anything else. Usually steroids should start making a difference within a few days. I agree with Sarah you should deffinatley ask to see another dr maybe you could phone to speak to one of the nurses and tell them about your concerns and say that you would like to see a different GI.
I reall hope they can find something to help you soon

 

[Marx]

Hmm yeah I'll look into that. Probably a good idea to see another doc.

I'm not quite sure about university either, I have an appointment tomorrow with the disability learning team at my uni, so I'll discuss all my options with them then. Hopefully good news. Yes you're right, stress just kills me off, and it doesn't help that I'm studying law.

Right now isn't as bad as a few weeks ago but now I get pains in my lower stomach and back every time I eat, my stomach is constantly bloated and I feel weak.

 

[SarahBear]

Let us know how your appointment tomorrow goes! Hopefully they'll give you some good advice! There are others here who could probably benefit from what you learn, as well.

Have you had your vitamin levels checked? Do you feel tired as well as weak? How severe are the stomach pains?

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear about the ongoing troubles you are having. I agree about perhaps trying to contact the hospital - either a IBD nurse or does yours have a helpline? To at least discuss the symptoms you are still having. It does seem that either the Aza dose needs to be raised or a new med tried. Whilst tempting I would only advise surgery if you have tried all other meds to no avail or you have physical evidence inside - scarring for example- that this is required as this will not garuntee you a trouble free future. It may also be worth looking into enteral nutrition, this has shown to be very helpful in calming the tum and could helps towards getting some weight back on.

AB
xx

 

[Marx]

Yeah defo will post the advice they give me! :ysmile:

Yeah I have an iron deficiency but they haven't given me anything for that atm. Also I used to take vitamin d tablets but that was like 6 months ago. Everything else is fine I think/hope.

Yeah in fact i do. I feel very fatigued and weak. The pains vary depending on what I've had to eat. But they normally come and go and last for about 5 minutes. Sorry to paint a graphic image but the pain is often relieved when I pass wind. But my stomach is so bloated I feel like I've got Exxon mobiles gas reserves in my stomach.

 

[Marx]

Thanks for all the support and advice guys! I will speak to my IBD nurse and tell her my concerns. I think I may need a new doc

 

[SarahBear]

They didn't suggest an iron supplement or a multivitamin? It might be a good idea to ask what needs to be done to right your vitamin levels at your next appointment. That can help a lot with the tired, weak feeling.

That isn't graphic at all! Keep in mind, we all deal with similar issues - you'd have a hard time painting a graphic image around here. Have you tried to keep track of and avoid what makes your stomach hurt worse? As Angrybird suggested, enteral nutrition might help a lot.

 

[Marx]

Haha! And there was me thinking I'd be grossing everybody out.

No they didn't suggest any vitamins. Literally all I'm on at the moment is pred, aza and ciproflaxicin. I also take paracetamol to help with the pain. But I'll bring it up at my next appointment.

I haven't kept a record or anything but every time I've had fried food, spicy food, coffee, popcorn, nuts, anything with skin pretty much I've always paid the price. So I stay we'll clear of them although I do get very bad cravings. Mmmmm...:heart: lol

I'll have a look at that enteral nutrition. Also, I keep begging them for some ensure but they always give a few and then cut me off. They help a lot with my weight.

 

[AckMac]

Welcome! You're in the right place!

Do you know if the disease in your ileum has caused narrowing or is it just inflammation?

 

[SarahBear]

Those foods are fairly common trigger foods. I made the mistake of drinking a coffee yesterday. It might help with the cravings to allow yourself just a little bit - a few drinks or a few bites.

Is Ensure by prescription or something?! You can't go buy them in the grocery store?

 

[Marx]

Hi AckMac. Thank you!

Yes I have a slight narrowing, and its pretty inflamed right now.

 

[Marx]

I think that would help too Sarah. Once I get inflammation levels under control I shall sneak a bit here and there.

Yeah the ensures are prescription only as far as I know. You can't buy them in supermarkets or anything. I could be wrong.

 

[KayleighMeek]

I don't think you can buy ensure in the shops but there is one called complain which is a powder you mix up with water or milk and it helps give you some nutrients when you aren't able to eat. So if the dr's won't prescribe any you could always give those a try and they sell them in most supermarkets in the supplement aisle

 

[Marx]

Thank you Kayleigh. I'll jot it down on my mums shopping list.

 

[AckMac]

My understanding is its good to get that inflammation down before surgery if possible. It usually leads to longer remission times. I could be wrong though so doublecheck me.

 

[Marx]

Thanks for the advice. I will double check. so everyone seems to agree that surgery only as a last resort? Doesn't it give you your life back?

 

[Angrybird]

It depends how bad things are before the op and what type of surgery you have to have and remember surgery is not a cure for crohn's. Also the op itself leaves scarring behind so you are then more likely to need further surgery at some point (my doc told me within the next 5yrs but I plan to go longer than that). I had a stricture removed last year and within 3 months was experiencing one of the worst flares I have ever had and was back on the steroids so I could eat my xmas dinner without throwing up. The tum is now settled but I am back on the meds. If you look at our treatment section you will see there are a fair few other meds to try to get your tum settled, the docs will not usually offer surgery as an option unless they deem is medically necesssary, if your narrowing is down to inflammation and not scar tissue they should want to try other meds first.