Crohn's flare up confusion and misery...

[crohnieMB]

This is my first time posting on here. To spare you all the drama and make an incredibly long, novel sized story short, I will just say that I got "sick" in May of 2010 with awful pains that to this day never let up. I went to countless doctors and had numerous tests run all to say: "you're constipated" "it's in your head" "nothings wrong with you" "anxiety" Which yes, I have dealt with anxiety my entire life and due to this unexplained pain in my lower right side that changed intensity and position constantly from dull and achy to sharp and stabbing all within a matter of minutes, only intensified it. I developed severe anxiety and ended up with a panic disorder that I'm still working on controlling with counseling today. Over the summer after a serious bout of pain and a spiked fever my GI wanted me to go into the hospital for scopes which resulted in none of than my Crohn's diagnosis. She also said I had IBS-C along with that which would explain why I don't get diarrhea at all except during sometimes. It's been almost four years of this absolute misery and while for a short while I get to feeling "better" the terrible pain never ceases to go away. I went to the doctor last week and my numbers and tests were fine and now this week and weekend I'm an absolute mess. I haven't been able to eat hardly anything for days not because I can't hold it down, but just because the thought makes me sick to my stomach. I managed to eat a bit more than usual yesterday, but today I'm back to I ate some toast and that's it for the whole day. I'm not even hungry. I've lost at least five to six pounds. This isn't normal for me and has my anxiety way up again. My pain level is through the roof. I've taken every medicine I've been given to ease up on pain and it isn't. I've also been on my heating pad like crazy. I'm at a loss because I don't know what is wrong. For the past four years I've been convinced it's my appendix even though it's been cleared hundreds of times, but I'm still stuck on that. I also don't know if this is just a weird flare up or what. I'm absolutely miserable, especially since I had to head back to my university today and I just want to be back at home where I can cry freely to my parents. Waiting to hear back from the doctor about what to do, but I feel so utterly alone and awful that this was my last resort to get some form of answer/feel better.

Apologies that this ended up being a lot longer than I expected. Kudos to you if you actually took the time to listen to a poor, sick kid cry about her problems and pains because no one else will listen.

 

[Sarah50]

Hi, welcome to the forum and sorry you're in so much pain! I have had the same kind of pain in the same place as you - lower right abdomen. I had it before being diagnosed with crohn's, starting last October... diagnosed with Crohn's in November. Doc put me on Asacol and a low residue diet and within 5-6 weeks, ALL of my symptoms went away, including that pain in the lower right abdomen. I'm SURE if I didn't go on the low residue diet, I would still have that pain! Are you on any kind of diet or have you eliminated any food that might be bothering you? This, to me, is very important, besides taking the recommended medication.

Just recently, I have had mega stress from an unsure job situation and that pain in the lower right abdomen has come back (past 2 weeks). So I have been drinking more fluids and eating less solids when that happens - like protein drinks for breakfast, milkshake for lunch, mac 'n cheese for dinner or just fluids... and it has helped but took me until today for the pain to subside.

I have crohn's in the ileum terminal part of the small intestine and was told that that is exactly where that pain is coming from - lower right abdomen. So maybe yours is in the same area? I don't know, just guessing.

If you haven't, maybe try mostly liquid diet and very soft food from low residue diet and see if the pain might go away. The dietician explained that a low residue diet is very easy on the intestines - very easy to digest and that when you're flaring or in pain, that's when you need to give your intestines a rest. Best of luck!! I know how awful it is to live with that horrible pain, day after day after day!!

 

[crohnieMB]

Mine is located in the same spot which is why I've confused it for my appendix, I suppose. I've been trying to figure out what foods "trigger" me, but have had no luck. For the longest time NOTHING bothered me and after my scopes I feel like everything does. To me it feels like food doesn't cause it, it's just a constant pain which is why I haven't been able to figure out which ones do. If that makes any sense. Being at college is the worst because I end up trying to find foods like that, but they literally have nothing crohn's worthy. As of right now with this awful no appetite feeling though I just do not have any idea as to what I need to do for it. Or if this is normal for crohn's patients.

 

[Sarah50]

Mine is located in the same spot which is why I've confused it for my appendix, I suppose. I've been trying to figure out what foods "trigger" me, but have had no luck. For the longest time NOTHING bothered me and after my scopes I feel like everything does. To me it feels like food doesn't cause it, it's just a constant pain which is why I haven't been able to figure out which ones do. If that makes any sense. Being at college is the worst because I end up trying to find foods like that, but they literally have nothing crohn's worthy. As of right now with this awful no appetite feeling though I just do not have any idea as to what I need to do for it. Or if this is normal for crohn's patients.

If you haven't tried following something like the low residue diet, you won't really know for sure if certain foods are bothering you or not. The reason I KNOW food does is because after the pain went away (after following the low residue diet and taking meds for a month)... I ate something on Christmas that I KNEW I shouldn't! That night and the entire next day I had that bad pain again in my right lower abdomen! During the day of that pain, I only drank fluids and didn't feel like eating. The day after and from then on, the pain went away while I followed the low residue diet completely.

So again, I would recommend for you to at least try it for a week or so and see if it makes any difference. I'll post a link to what you can eat on the low residue diet below. It's worth a shot if it might get rid of the pain, right??? Good luck!!



What Is a Low-Residue Diet?

"A low-residue diet is a diet in which fiber and other foods that are harder for your body to digest are restricted. Fiber is made up of plant material that cannot be completely digested by the body. High-fiber foods include whole-grain breads and cereals, nuts, seeds, and raw or dried fruits.

Residue refers to undigested foods, including fiber, that make up stool. If intestinal walls are inflamed or damaged, digestion and absorption of nutrients and water may be impaired, depending on the location of disease activity.

In some people with Crohns disease, the small intestine may also become very narrowed. The idea behind a low-residue diet is to reduce the number and size of bowel movements you have each day, thereby lessening painful IBD symptoms such as cramping, diarrhea, bloating, and gas. However, it does not affect inflammation or the disease itself.

A low-residue/low-fiber diet may be recommended for short-term use during disease flare-ups, following surgery to help with recovery or for the rest of your life."


http://uvahealth.com/services/digestive-health/images-and-docs/Low_fiber_Low_residue_diet_3.pdf

 

[Sarah50]

Oh, I didn't realize you tried the low residue diet. So sorry it didn't work for you... it has worked really well for me.... and getting rid of that pain!! I know how you feel and it's awful!

One thing you haven't mentioned, are you on medication for the crohn's and if so, what are you taking?

 

[crohnieMB]

I'm on budesonide, dicyclomine, just prescribed ranitidine for acid reflux but I haven't taken it yet because of the fact that I haven't been eating. I also have hyoscyamine for pain as needed. Which is always. Sorry, I forgot to mention that!

 

[Sarah50]

I'm on budesonide, dicyclomine, just prescribed ranitidine for acid reflux but I haven't taken it yet because of the fact that I haven't been eating. I also have hyoscyamine for pain as needed. Which is always. Sorry, I forgot to mention that!

I know budesonide is used short term for flares. I looked up dicyclomine which is used for IBS. But I don't see anything for crohns which was your diagnosis. Well I'm no doctor and am still learning about crohns so maybe what you're on is appropriate for your diagnosis. Hopefully someone else will chime in.

 

[crohnieMB]

Oh wow. I always thought my GI put me on budesonide for my crohns... Since I was only diagnosed in July I really don't know that much about everything yet. I think I'm still in the denial stage because I don't want to be classified as "chronically ill." The pain is just what is too much. I don't even want to get out of bed most days.

 

[soccermom081105]

CrohnieMB.. does the hycosyamine help with pain? My GI doc has me on it and i am not getting much relief at all.. I feel like i am going to live in constant pain for the rest of my life