Crohns & anorexia

[PiratePrincess]

Hey, I'm new here. I have a few concerns, that just don't add up. I'm 40 and have a history of anorexia before being diagnosed with Crohns. I did really great for many years and had just recently went to the gym, to loose a few pounds I'd gained from hypothyroidism. I met my weight goal, no less like in the past and plans of toning up poor muscle tissue and bony prominices. To be fit and well. Suddenly I started to have another flare, probably one of the worst in the last ten years, with a thrombosis the size of a quarter, it was excruciating and bled nonstop. I had to use sitzbath bc I wasn't allowed to wipe of course. I was taking azufasalazine, entercort, metro gel, prednisone and other prn for nausea, pain, etc. The D was never ending, along with spasms, pain always been one inch or more to right of navel, in stomach and with gastroenteritis always it seems. Back in 1997 they passed it as IBS, but then ended up being admitted bc the bentyl back then, has my rolled over in a ball. The pain was worse than anything ever experienced. So after being through test after test, and stopping the Bentyl bc it was obviously not IBS and it made me worse.. They thought it was possible large intestine ileum, but just kept pumping meds for two weeks, before seeing my first GI instead of GP. That's when my Crohns was diagnosed via colonoscopy, bloodwork, ct scan, etc. Currently switched (5days ago, GI hoping bc in same family, but bc of its extended release it will make it to the right areas on time) Pentasa 500 mg 4x a day along with prednisone, metronidazole, phenergan prn, hydrocodone prn, vitamin D 5000 IU a day, plus they upped my thyroid bc it was also low. I also take clonazapam 1mg bid for anxiety and have most of my life. My nails stay purple, my hair is brittle and falling out and I feel like I did so well, mtng my goals without going overboard with diet. Now I've lost too much bc of D. The pentasa seems to be working so far, but hurts and burns when I go, esp when I wipe from granules. GI wants to do another colonoscopy in two weeks once I'm better. What bothers me and I still question to this day, how can my colonoscopy last year showed to be fine? Since then, still the flares continue as they do. Something isn't right. I'm scared to eat anything, bc experienced some constipation in last few days. Bmi is under, but dont want to gain over my ideal wgt with new med. Find myself checking the scales. Not bc of ano, just bc I hope to keep a normal wgt. But now when I do go, it's like two ft. Gross (sorry!) and its painful. The sharp pains near navel and never ending dull pains throughout all of stomach and intestinal tract have still remained just the same. I just feel like something isn't right and or missing in my situation. I was sent the same day I started pentasa after for for possible bowel obstruction. So hopefully I'll hear something tmrw. So nauseated till my anxiety is off the roof from worry and stress. D has slowed down, but now it's the gross example above I gave, I'm dealing with.. Plus so weak, ears popping (pentasa side effects?) Can't relax and feel horrible. Sorry for the book. Just wanted to be straight forward and not leave anything out. Any feedback would be greatly appreciated.

Thank you so much.

 

[PiratePrincess]

My username is bc we scuba dive, it's nothing offensive. Plus I didn't want to use my real name for privacy. Thanks and have a blessed day.

 

[PiratePrincess]

So dehydrated but too nauseous to drink with headache and ibd pain. I'm sincerely trying though.

 

[DJW]

Hi and welcome.
You're in a very difficult place.

It is possible to have a clear scope and flair if the activity is located in the small intestine.
Have you had an upper GI series?

For dehydration I'd suggest trying pedialyte. No prescription required and you can get it in any pharmacy. It is quickly absorbed into your system.
If you can't keep fluids in you need to go to the hospital and get checked out.

I hope you feel better soon.

 

[Lady Organic]

Hi and sorry for your troubles. a flare can come really fast within a couple of months. I had a clear scope last summer and 2 months after, I was in a moderate flare. Flares can also express themselves differently throughout the years. Hopefully this one will resolve fast. good luck. Another poster just wrote a message on this board on the subject of anorexia. It was over the weekend. You can find her here: http://www.crohnsforum.com/showthread.php?t=74095

 

[PiratePrincess]

Hi and welcome.
You're in a very difficult place.

It is possible to have a clear scope and flair if the activity is located in the small intestine.
Have you had an upper GI series?

For dehydration I'd suggest trying pedialyte. No prescription required and you can get it in any pharmacy. It is quickly absorbed into your system.
If you can't keep fluids in you need to go to the hospital and get checked out.

I hope you feel better soon.

I've never had a upper GI, just lower. Never had any upper reflux type issues. But I will definitely look into asking my GI about the clear scope. I'm very familiar with pedialyte, with having children. I didn't think of that. But it's worth a shot. Thanks so much and I truly appreciate the positive feedback.

Thank you

 

[PiratePrincess]

I have had the mouth and throat ulcers just not reflux so much. Doing the whole lidocaine rinse that you don't swallow kind of thing. But if not feeling any better soon, I'll definitely see the e.r. Thanks again

 

[PiratePrincess]

Hi and sorry for your troubles. a flare can come really fast within a couple of months. I had a clear scope last summer and 2 months after, I was in a moderate flare. Flares can also express themselves differently throughout the years. Hopefully this one will resolve fast. good luck. Another poster just wrote a message on this board on the subject of anorexia. It was over the weekend. You can find her here: http://www.crohnsforum.com/showthread.php?t=74095

Yes they sure can and you never know how bad it will be, until it happens again. I'm very thankful bc I know in this life, there are many far worse off. But it still doesn't change the fact of our ibd. I guess I'm a little down. Probably lack of good rest will help. Hopefully sooner than later. Thank you for your kind words, it means so much. I wish you all the same in good health. I will check out the link. Thank you so very much.

 

[PiratePrincess]

**a lack of good rest is what I meant. Meds have me in for a loop. *as with typos. I'm going to check the link tmrw seeing we have something in common on the ana/ano and crohns.. As for the clear scope, isn't that the same as the upper GI endoscopy? Bc my mom had that and she went through a lot. She can't burp, so it's usually a loud and lengthy sound of flatulence. Eww. But she can't help it is what it is. She's had polyps and then some. To both of you who first replied to my story, I have a question with a doc of three stars.. Why wouldn't they have checked, just in case already.. if given more answers of a possibility for a closer answer to my crohnie situation? Why bother after so many years? One would think they'd checked everything from mouth to bums.. Not that you have answers, we aren't docs. But we all can relate and learn during such as we familiarize with what if or isn't? I pray I'm making some since. Prednisone make me sick somewhat, even though eventually a little better along with the new crohn med. I hope anyway. (Other than ear popping, equilibrium off) I just always figured since from my tum and navel downwards, that a lower is all I ever needed. I loved my GI's NP the best. But at this point, not so sure. I know they're extra busy and work from many big cities and I would imagine that's a lot to consume. However I'm still the patient of many I'm sure. So no judgment upon anyone. Just excruciating pains, cotton mouth, sore and raw bottom, dehydration, weight loss, no appetite, nausea, vomiting, D & now C, tum spasms, lots of gas that's unbearable in a family household, bc when it unleashes I feel like the ugliest 40 yr old mom and grandma of one, even though everyone says considering all that is.. I look 30. Thank you people, bc on the inside I do NOT see or feel it. Enough venting.. Just can't seem to understand why the only two GI I've ever had haven't suggested such as both of your replies who basically considered the same thing. One would think over a decade++, would take notion being the Dr or even his NP.. Whom I feel more comfortable with, than he. Anyway, as usual during this flare I'm probably not making much since. But hope you can understand regardless. I'll check in the link you gave to another whom can possibly relate. Meanwhile drinking water as much as possible and hoping to feel better soon. Bc the last thing I need is to become proana again. I have my fams, children, one grandbaby and I refuse to let all I overcame cause me to faiil negatively, being unwell. Thank you both. I'll read up on the one ladies link tmrw. I would've already but with all meds recently taken I'm lucky to reply as I have.. We're a military fam. So it can cause a lot of extra stress, when one is supportive yet again busy nonstop as i try to get my vitamin d on. Easier said than done when in the middle of a horrible flare and no direct sun exposure. He is however, very supportive. My husband is my anchor other than my almost grown kiddos and my faith of the Lord. No judgment passed, speaking in ref to my beliefs. He constantly researches and even my Dr NP didn't know of th maps vaccine not yet approved. But with everything crossed it will become a cure for all of us. Once again sorry, I just needed to vent. My goal for tmrw is to connect with the link one of you sent. May e well be able to help one another as you both have already wit myself. Godspeed ibd and thank you both.

 

[kellehbeans]

Hi there,

I can totally relate the anxiety etc. as I was diagnosed with bulimia 2 years ago, but have been suffering for 18 years. If you need anybody to talk to, then I am here. I'd appreciate somebody to talk to within the eating disorders part also because I find myself struggling, so any support is great support.