remission is overrated

[Essieluv]

I have recently been told that my Crohn's is in remission. I am glad, however I find this to be very disheartening, as I feel worse now than when I was flaring. Apparently my symptoms are from IBS now, but I find it hard to believe that IBS can make me feel this sick, exhausted, and weak.

Is this as good as it gets? If this is remission, I think it is over-rated. I'm feeling very discourage and frustrated, as no doctors are willing to help me because my Crohn's is in remission and I just have "IBS". Will it get any better?:confused2:

 

[Grumbletum]

I'm sorry to hear this. On what basis have they decided you are in remission? They told me I was after three Infliximab infusions because I had a clear colonoscopy. I also had a clear colonoscopy just before my surgery, during which they found inflammation they hadn't been expecting.
Trust your instincts. Perhaps a second opinion is in order.

 

[Essieluv]

I've had two colonoscopies, a small bowel follow through, a pill cam endoscopy, an endoscopy, a ct enterography study, millions of tubes of blood work, a few MRI's and stool tests. I really don't feel like I am in remission, and have a hard time believing my doctors. The problem is that three GI's have told me this, and I just don't know what to do. My gut is telling me that something is going on with my Crohn's, but nothing is showing up. I just have a bad feeling about being told I am in remission and being neglected by docs. I feel like big problems are going to come from this a little down the line. Very frustrating, but I don't know what to do at this point. I am only twenty, I need to have a better quality of life. This is overwhelming me so much.

 

[Cat-a-Tonic]

Essieluv, I'm in a similar situation. I was in remission for about 2 years, then about a year ago I fell out of remission. I started passing blood and having a lot of bad days. My GI ran some tests and nothing showed up, and it was his inclination to believe that I'm still in remission and that "IBS" is causing my current symptoms (he said the bleeding is caused by internal hemorrhoids). I don't think that's the case, I don't think it's IBS, I think I've been in a flare. It's been going on for about a year now and I just had a GI appointment last month. I spent over 30 mins in his office, crying and telling him that I'm not okay and that I need something to get the flare under control. He kept suggesting things like IBS meds or antidepressants and I told him no, that's not good enough. He finally relented and put me back on Entocort, but I really had to fight for it.

Unfortunately, it sounds like you're going to have to fight for some proper treatment too. It will be hard, but you can do it. I would start by writing down everything, what symptoms you're having and how severe they are and how long they've been going on for. In my experience, IBD can sometimes hide really well on test results but at the same time cause some pretty hideous symptoms. I would also write down what you'd like to propose as a plan of action for getting your flare under control - what medication you'd like to try or what your thoughts are (stem cell treatment? Surgery? Medical trial?). I went to my GI prepared to beg for Entocort as that's what got me into remission last time, and it took a lot of begging and arguing my case (I should be a lawyer at this point), but I got it and I'm starting to feel better now that I've been back on it for a few weeks. Anyway, my point is, have a plan and stick to your guns and fight for yourself - you know it's not IBS causing your symptoms, so don't let them write you off as having IBS. Good luck and hang in there!

 

[shamrock15]

Well, remission certainly isn't over-rated - I am going into year three after over two decades without let up. I had bleeding that stumped my GI, even with the pill cam (saw lots of scars, but nothing active). You may never feel completely normal again (I fight fatigue constantly), but that bleeding did finally disappear. I told my new GI - I canned my old one because as a "crohn's expert" he apparently knew my bowels better than I did - that remicade took care of about 80% of what I saw as symptoms, and he put me on imuran (azathioprine) to take care of the rest. Took a few months, and a few changes in sleep and eating habits, but remission finally took hold.

 

[highlandsrock]

I'm in remission, or at least I was, but I'm not so sure now as haven't been feeling too good over the last few days.

We all suffer from Crohn's in our own particular way and I believe it's the same for the way our bodies behave in "remission". I wrote down some thoughts here.

http://www.crohnoid.com/2014/02/cure-vs-remission-thoughts-from-crohns.html

Would be interested to hear other sufferers thinking in the matter

 

[DustyKat]

Just my musings but I often wonder if those that suffer with ongoing symptoms, such as yours Essieluv, and where remission appears to have achieved are actually experiencing something like Chronic Fatigue Syndrome (CFS).

CFS may have many causes such as stress, following acute infection and so on. IBD certainly has an infective component and lord knows it is stressful, both physically and psychologically. The symptoms are many and varied but I do recall that IBS like symptoms are not an uncommon presentation with CFS.

I’m not suggesting you have CFS, it normally wouldn’t be a consideration unless it was present for at least 6 months, but rather it may be something to throw into the ring in your search for answers.

Where is your Crohn’s located?

If it is small bowel have you had serum levels done for B12, Iron Stores, Folate, Vit D, Magnesium and Zinc?

Good luck hun and I hope you soon have answers and relief.

Dusty. xxx

 

[Essieluv]

He kept suggesting things like IBS meds or antidepressants

I have been on numerous IBS meds with very minimal/no relief. IBS diets didn't do a thing, either. I am sick, and I want to feel better. Normally, I trust my doctors, but on this I just feel that they are not seeing the whole picture. My symptoms feel like Crohn's symptoms, and I have fevers almost daily. Fevers are not a symptom of IBS, but my doctors just shrug it off. I wish my GI would give me a taper of Pred or Entocort just to see if it helps, but I'm not sure how to request this without sounding like an idiot...

 

[Essieluv]

Just my musings but I often wonder if those that suffer with ongoing symptoms, such as yours Essieluv, and where remission appears to have achieved are actually experiencing something like Chronic Fatigue Syndrome (CFS).

Where is your Crohn’s located?

If it is small bowel have you had serum levels done for B12, Iron Stores, Folate, Vit D, Magnesium and Zinc?

Dusty. xxx

I will be asking my GI about this being a possibility for me, thanks. I have come across a lot of CFS/ME patients lately that have similar symptoms as IBS.

My Crohn's has been all over the place. I've had it in my esophagus, peri-anal, small bowel, and stomach. I was just recently tested for iron, B12, Vit D, and Mag. While the iron and B12 were a tiny bit low, everything else was fair. I do take Vit D supplements (50,000 iu once a week) and Mag tablets, though.

 

[Maya142]

Fever can be a symptom of arthritis Essieluv. My daughters often have fevers when they are flaring. That said, pred would definitely help your joints and if it helped your stomach issues... well then you would have something concrete to show your doctors! Could you ask your rheumatologist?
What meds are you on currently?

 

[Essieluv]

I am on Pentasa, Amitriptylene, Zonisamide, Ranitidine, Levsin, Zofran, Phenergan, and occasional colace tablets. I tried sulfasalazine last week, but broke out in hives all over my legs.

 

[Nancye50]

The 50000iu VitD you're on is probably D2, Essieluv. Many people don't absorb D2. I didn't. I take D3 drops but haven't had a recheck to see if that brought my levels up. Might be a small piece to your puzzle.

 

[hbrekkaas]

I have recently been told that my Crohn's is in remission. I am glad, however I find this to be very disheartening, as I feel worse now than when I was flaring. Apparently my symptoms are from IBS now, but I find it hard to believe that IBS can make me feel this sick, exhausted, and weak.

Is this as good as it gets? If this is remission, I think it is over-rated. I'm feeling very discourage and frustrated, as no doctors are willing to help me because my Crohn's is in remission and I just have "IBS". Will it get any better?:confused2:

I was going to ask the exact same question. remission sucks. Every test comes back normal, but there's still a ton of symptoms to deal with.