Why am I not getting better?!

[cca2013]

My insurance from my job FINALLY kicked in, so I'm back at Kaiser now. Today I had a colonoscopy with my new gastro and things went smoothly. Afterwards he informs me that he doesn't believe I've ever had a stricture and he believes they (county hospital) just had a hard time getting pass the sigmoid (?). He wants me to continue on 30 mg of prednisone (yuck!) until he gets my lab work back (he ordered the prometheus test) and he's actually thinking of having me stop remicade and not even try humira! :eek2: He explained to me that they haven't been on the market for too long and no one really knows the long term effects. This is a bit scary because remicade really was the only thing that worked for me...

But I'm even more confused after my appt. There was no blockage nor stricture...and I've been taking pred for almost a month...

I'm not in remission though and prednisone isn't helping me to gain weight! Of course the ugly moon face is back though so I'm feeling very ugly. Imagine a tiny body and huge round head, with fat cheeks. Ugh.

I just don't understand why I'm not getting better and why I'm not gaining weight. I've been out the hospital for months!

To be honest, I'm sick and tired of people making comments about my weight! "You're soooo tiny!" "Get some meat on your bones!" "I'm glad I'm not THAT small!" :ymad: Leave me the heck alone!

 

[CrohnsChicago]

I'm sorry you have to go through all of this. From the sounds of it though your doctor is doing a good deal of testing to help you get answers including the prometheus test. I hope your results can shed a little more light on your situation.

Having IBD is definitely an annoying thing to live with and other people's comments don't always help.

With regards to you gaining weight, what does your diet look like? I would look to healthy, fatty foods such as avocados, salmon, peanut butter/almond butter and try to incorporate those into your meals. Just a few ideas to start off with. And if it continues discuss with your doctor the weight loss and alternative ways to combat it, if at all possible.

 

[valleysangel92]

Hello I'm sorry you aren't feeling any better

Has your doctor mentioned what it is they would like to replace the remicade with? If they haven't I would suggest finding out what their plan is pretty soon so that you know what's going on, it can be very disheartening when we don't know what is going to happen next.

People can be so unkind, it's sad how little people seem to care about how they make others feel. Have you spoken to your doctor about maybe starting supplemental nutrition such as ensure? Some people also find smoothies a good source of easy calories.
You may want to consider talking to a dietitian as well as they can help you to work out a plan to get some healthy calories into your diet that won't be too hard on your intestines.

 

[cca2013]

Thanks you two for responding! :ghug:

CrohnsChicago: So far he does seem like an excellent doc! I think I'm just frustrated because I've been in a flare forever it seems like. And tbh, my diet isn't the greatest...I do love salmon and I eat it often, but I mostly eat crappy fast food. :shifty: I know, I know. But I would think eating crap all day would help me gain weight...it hasn't though!

valleysangel92: So far he's only mentioned keeping me on pred and he gave me some enemas (starts with an "m"...I forget the name). But I'm sure he will go more into detail with me when all the results come back. And yes, people are really cruel! It's funny, and I hope I don't sound terrible...but sometimes I wonder 'wow...I wonder how you would feel if I talked about how "fat" you are?!" But, I'm not a mean person...I could never be so rude to anyone...but when you are thin, everyone feels they can tease and mock you. I don't understand. And I do drink drink ensures everyday...I actually also purchased a whey protein weight gainer...hopefully that helps some as well! And good idea! I don't know why I've never though about speaking to a dietitian! Thanks! :smile:

 

[CrohnsChicago]

If you go the dietitian route, make sure you find one that has knowledge of digestive disorders.

Dietitians can be helpful to many, but most of their skills are aimed towards people getting healthy that don't deal with symptoms that we do. And there are not many out there that knows how to help folks with situations like us because our symptoms vary too much from person to person. It is possible that they can make recommendations that you can't have at all or somtimes make you feel worse or simply suggest things that you may already be aware of. Do your research if you go this route. If you are in remission they can be a great resource. If you are flaring you should be more cautious when using them.

 

[valleysangel92]

I think the enemas youre referring to May be mesalamine , these are the gentler drugs used to treat IBD and sometimes they are used as a first step before trying harsher medications with more side effects.

I totally get what youre saying, I really don't know why some people think it's ok to say that stuff like that, I find it best to think of it like this, those that matter will do their best to understand your illness and why you are underweight and they will try to support you... If they don't, then they just don't matter.

I do agree with CrohnsChicago, it does need to be a dietitian that has experience with digestive disorders, which are a little tricky to come by sometimes but if you can find a good one then they may be able to give you that bit of extra support you need

Edit - you could try doing a calorie diary, to see how many calories you are actually getting in a day, we did these as part of my college course and many people were suprised that they werent having as many as they thought, so this could be happening for you to. You can find the calorie information for most foods on the packaging and online, just write down what you're eating and how many calories it is and then add it up at the end of the day, you could do this just for a few days or for a few weeks.

 

[UnXmas]

I understand the inability to gain weight. The thing is that most of the weight-gain people experience from prednisone is a result of pred increasing their appetite and so them eating more - the prednisone doesn't cause weight gain on its own (other than a slight amount if water is retained), it's the extra eating that causes it. I never experienced that particular side effect to any great degree, so I didn't gain weight on it. Is it making you feel hunger and eat more?

If you're eating an excess of calories and really not gaining, you probably need to see a doctor about the possibility you're not absorbing everything properly. I think it's worthwhile to work out the average number of calories you consume in a typical day. You might find that you're not actually eating as much as you think, especially if symptoms are making you feel unwell - if eating makes you feel sick or uncomfortable due to Crohn's symptoms, you may feel like you're eating a lot when you're actually not eating so much. If this is the case then it's a different scenario to one in which you truly are getting in plenty of calories and yet failing to gain due to malabsorbtion. So determining which is the case for you is probably a good place to start.

 

[Hope345]

CCA

We just took our daughter off of Remicade too. No more biologicals for her. it is actually unusual to find a GI who feels that way.
We hate prednisone but it helped the first time. If it is in your lower colon, the cortifoam has actually worked the best for our daughter. It is topical and does not cause any of the side effects (at least not for her). Our daughter, 15 is suppose to start the mesalamine enemas as well. She actually has tried a lot of the powerful drugs but this new GI wants to go back to the topical mesalamine as well as keep taking the oral ones.

We are willing to try it, because in her case in may be just what works. I think it depends on where the inflammation is. Let us know how they work for you. When she starts it, we were going to do just about half the bottle for as long as possible. They say you have to work up to it. Use extra towels.

Moving towards a healthy diet is a great idea. Our 15 year is finally making better choices for her diet. example: eggs and toast for breakfast. healthy ham or tuna sandwich for lunch, and steak for dinner. she is anemic right now so we have to push some red meat. some can not tolerate such a diet, but it is exactly what she needs. Fresh fruit (no skins) and vegetables are important too. But proceed with caution. Everyone is different. Juicing is always a good option for fruits and veggies.

let us know what the dietician says.
best to you

 

[cca2013]

Thank you all so much! I really appreciate the advice and support! :ghug:

I had my first enema last night...i know it's too early to tell if it's working or not. However, today I've been going to the bathroom more frequently with loose stools...not sure if it's the enema or the colonoscopy. In fact ever since the colonoscopy, my flare feels a bit worse. Hope that makes sense.

I do feel like my appetite has increased since being on pred...I eat a ton, I think...maybe I'm really absorbing nutrients. This is something I will def bring up to my gastro the next time I see him!

valleysangel92: that's actually a great idea! I'm off to google how to keep a calorie chart!

Hope345: Is there a reason you took your daughter off remicade. It's funny, I've always felt it was a great drug and it wasn't until he mentioned possible long term effects, that I started thinking, maybe it really is too strong of a drug for me. Nonetheless, I'm willing to try the milder drugs...I just want things to work so I can get back to remission.

I will def keep you all updated! Thanks again! :ghug: