Tired of being sick

[kkw]

I have had every test available in the last 2 months and they still cant decide if I have Crohns or something obstructing my small intestine. I just got through with the small camera that you swallow and it doesn't show crohns. I started out 2 months ago weighing 153lbs. now I weigh 128lbs. I look as bad as I feel. Why does it take so long to decide what is doing this to my body? I have very severe pain in my right side when I eat and gas that makes my stomach swell up like a baloon. I can hardly work a full day any more because of the pain. All I eat is rice.
My Gp put me Prednisone 40 mgs and it is making me feel even worse. When this first started the Dr said it was either Lymphoma or else Crohns. Am I the only one that is just stuck in limbo waiting for an answer???

 

[Kev]

Hey, kkw. Welcome to the forum. sorry to hear about your troubles. I hope they resolve the pain soon, and EVENTUALLY make a 'correct' diagnosis. I say this as I am still waiting on a definitive diagnosis. I won't scare you with how long I have been waiting.. Let's just say that I wish they'd been right the 1st time, and that my bowel resection had cured me. On a very positive note, the fact that you've had a pill cam give your ileum a clean bill of health on the inside is VERY good news. Have you had a colonoscopy? What about a laproscopic exam of the area? Why did your GP put you on prednisone? Do you have a GI? Not being able to eat is a real pain, been there, done that, have t-shirt. I would suggest you try liquid diets and diet supplements, and also crack whip at your doc(s). Aside from pain and gas, any other classic symptoms of note? The other biggies not on your list are diarrhea, constipation, nausea & bleeding. If it makes you feel any better, you are not alone, and are always welcome here..

 

[hanaa al baydany]

welcome to our family forum. I realy sorry that u did feel lightly better. But when u have started the prednisone,if u have crohn's,u should feel better.And bcouse u did'nt that means it 'snt crohn's or there is something is associated with other thing.
for yr diet try to eat protein and b4 u feel full eat rice.
feel free to ask,and let me know any news.
wich u all the best,welcome to our family.

 

[kkw]

I have bleeding in my stools and in my urine. I switch from diarreah to constipated for a week. I dont have much nausea any more. My GP put me on Prednisone because of my c-scan showed a lot of thickening (I believe 1 cm) in the small intestine and he thinks this may help this. I have a GI but this has not helped. Its like a great big guessing game. By the way, I had this happen to me back in 2002 and I lost weight,couldn't eat anything without throwing up,diarreah,cramping,(basically the same stuff) & I was sick for about 3 months, lost about 30 lbs. and they took my gall bladder out. After about a month I got better. Then this happens now.

 

[hanaa al baydany]

I realy sorry to hear that.But i realy do'nt know exactly. i hope u fell better very sson.
Plz keep inform us . take care.

 

[Kev]

Hey again kkw.. Have you asked your GP if he's any notion as to why the CT scan showed thickening, but the pill cam appeared to contradict it? Is it possible the CT results are from the Gall bladder surgery? Possibly scarring or post op adhesions? did they ever confirm what was wrong with the gall bladder? could it have been caused by crohns? is your GP copying your test results to your GI, N vice versa? If you've got two doctors working on it, you know the old saying 'two heads are better than one'. But sometimes, 2 dr's take competitive stances, and contradict each other rather than complement. Blood in stool AND in urine definitely indicates something worth pursuing... As for switching between diarhea and constipation, that's pretty typical of IBD. It's like just when you think it will never end, it does, and you wind up praying it'll start again. I've experienced both, big 'd' is more of a nuisance, personally I've found that the big 'c' is much more of a pain. Just my humble opinion on that.
anyway, keep posting, keep pursuing the root cause, and all of the best, ok?

 

[kkw]

Hey Guys,thanks for all your caring. It helps to know that I am not alone. As to your question Kev, about the 2 dr's....I think they are both stumped and neither wants to be the one to say "oops! I dont know the answer". But my GP said today it definately was something going on and to give it the rest of the week and then he was sending me to Houston to get checked by the big guys. I just cant stand this pain much longer. Thanks again for all yall's help.

 

[Kev]

Hey kkw.. not sure of how much of a help i've been. I just asked some questions. you may want to ask your GP, GI or both, if you can get cc's of all your records, test results, charts, etc., to take with you to see the big guys in houston. it might preclude them running you thru all of the same tests all over again, or asking lots of questions you don't have the ready answer to. wouldn't hurt to ask them. they (houston drs') may want to run all these tests over again anyway... why? well, it could be they don't trust rural doctors/tests, etc., or it could be so that they could bill for these tests all over again. maybe that's just my overly pessimistic side talking. anyway, all the best. let us know how you make out. in the meantime, ask your doc for some meds for the pain and the gas... no sense suffering while they are trying to figure out the cause.

 

[cindypat]

I also wander if mine did not have something to do with having my gallbladder, removed. I had it removed in May and was told that my gallbladder was inflamed and I did fine for about 2 months and then I started hurting in my abdomen, had my appendix out and then was diagnosed with Crohn's. I really think the 2 were connected to Crohns disease the whole time.

 

[kkw]

Well, I am back. I have been to Houston to see specialists who said I had IBS. They kept putting me on these terrible meds that only numbed my pain & then finally one day at work I started with most horrible pain I had ever had. I called the Big Dr. & couldn't get through to talk to a real person. So I went to the ER in my small rural town. The Dr did another c-scan & came out & said this was either unlerative colitis or else chrons. They advised to see a GI asap! My GP sent me to a friend of his who agreed surgery was needed fast. The same day I had surgery. They cut out many strictures & also took out my appendix (inflamed also). That was 2 weeks ago, I am back at work this week & the pain is back full force again. I had read some of y'all are on LDN. Did this help at all? I am so tired of being sick. I will try almost anything to get well again.

 

[D Bergy]

LDN has kept me from my previous symptoms. Do a search on the forum as this has been discussed rather extensively in the past.

Dan

 

[Kev]

LDN has made a tremdous change in my situation.. the improvements are great. I am still not 100%, don't know if I'll ever reach that (I've had a lot of surgery). But I am so grateful that I found out about this on this forum. It is not the solution for everyone. I tried it, it gets two big thumbs up from me. Dan is experiencing good maintenance on it, and another member.. Killerzoey.. tried it. He hasn't been back to let us know how he made out, I'm guessing he is doing OK.. else I think he'd be back here looking for other meds or options.

Hard part of going LDN is getting a doc to prescribe it. Naltexone was approved for treating addiction, but it was never 'officially' approved for IBD. A study was done, with great results.. but it was only one study of a small group.
A 2nd, double blind study on a larger group is in the works. Prescribing a drug that isn't approved for a specific disease is referred to as 'off label prescribing'.
Many docs are reluctant to do it; tho it is legal AND ethical.. To convince a GI you may need to show them the study.. American Journal of Gastro-enterology.
I think it was in the late spring/early summer editions.. there's a link in here on another thread.. And there is a website of people who use it for treating a wide variety of illnesses.. http://ldn.proboards3.com/index.cgi Try looking in there for more info.. Like a list of docs who will 'long distance' prescribe it IF you can't convince your local docs to prescribe it... and a list of pharmacies who compound it... the dose is sooo low, the pills have to be custom made, which is another 'hiccup'.. and, the other big consideration is that you can't go on LDN while on immuno suppressor therapy.. they'd conflict with each other, a lose lose proposition. And LDN works slowly, so you can actually get worse before it gets better.. and it isn't guarranteed to work on everyone. success rate is in the 60% - 89% range. Better than the other meds, and no wicked side effects.

Anyway, that's a brief synopsis... I may have missed a couple of points anyone who is thinking of it SHOULD consider. search on here, maybe Google it, check out the LDN website, talk to your doctors, weigh your options. All the best, OK?