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Sick Again

Thank you Allieinwonder for letting me know about this part of the forum

I too am undiagnosed and struggling.
I copy and pasted what I wrote on the other forum.

Sorry for such a negative post subject, but I am so at a lost right now.

It has been over two months since my last post, my family doctor has since put me on Lomotil which has helped with the chronic diarrhea and pains. I have had a few good weeks which too say has been wonderful, I have had some up and some downs during those weeks but nothing like today.
During this time, I have had a WBC scan, an endoscopy ultrasound and a Nuclear endocrine tumor tests. So far the results from the EU and the Endocrine have came back good. No results for the WBC scan yet, and I have a CT scan scheduled for August 19.
So far from all my tests they have either came back negative or inconclusive. The only test that has ever came back with something is the Colonscopy which showed tiny ulcers of the ileum and the doctor doesn't feel that is the cause of my diarrhea symptoms because there was no signs of inflammation and the ulcers only cover a small area. He said it is not crohns at the moment it could develop in 5 to 10 years or not at all.
Yesterday and today I have had alot of gurgling and I mean alot in my intestines, I feel really gassy and have went to the bathroom 4 times in a very short period of time each time with alot. I am scared that the Lomotil is not working as well as it has before. I know I am only taking 1 a day which is fantastic as my family doctor says I've gained 8 pounds in about 10 weeks while on it, which was well needed. I go see my Gi in September after all my tests have been done.
I am truelly at a lost, I have been sick for over a year now and still we have no answer. I started seeing a phycologist and honestly without her I don't know where I'd be, she has sent letters to my physicians explaining to them my situation and they have pushed to have all my tests moved up (thus explaining why I had 3 tests in one month). I am fed up of going through tests I think I have had every tests imaginable out there to suspect crohns and yet none has came back with anything. I understand the doctor is scared to treat me with the medications because of the risks but I'm so scared it is getting worse or it will keep escalating. I know my phycologist says that " you never know it might just be IBS" but isn't IBS controllable.
I was seen by 3 Gi's which each have told me that Ulcers can appear in your colon and not be crohns for different reasons.
I'm so scared I'm going to wake up one day and its going to be all over because they didnt act sooner.

Sorry just needed to vent a little.


Super Moderator
Hi Daunting, welcome to the club. Sorry to hear you're struggling, but it is good that at least you're having some tests, and I hope one of them is able to give you some answers! Is Lomotil the only med you're on right now? I've taken Lomotil and it's very good at stopping my diarrhea (sometimes it has the reverse effect though and stops me up for a few days!), and it seems to help with the cramps too, but it didn't do anything for the nausea, fatigue, pain, etc. It sounds to me like you need more than just Lomotil! It's basically prescription strength Imodium.

I've had a lot of tests myself and all of them have come back normal. I know how frustrating it can be to go through test after test and being told everything looks fine! Don't give up, even though it's so frustrating and exhausting - you know you can't go on in pain with no answers like this, you've got to keep fighting. Best of luck with all your tests and results, and please keep us posted! Fingers crossed for you that you get some answers from all of this!
Thank you for your reply.

So far the meds I am on, are:
10mg paxil
ortho 777
Salofalk 500mg x 6
Syntroid 0.05mg
lomotil 1 per day

My gi doesnt think I have crohns but yet he has me still on Salofalk??

Lomotil was great for the first few weeks it did wonders, now I feel as if things are falling apart. Last night I took my lomotil around 830 and had excrusiating pains about 2 hours after, that slowly went away with each flatulance.
My family doctor honestly thinks I have the start of chrohns but is being exaberated by IBS-D. On my next visit I plan on asking him to change me from paxil to something else, I was doing some reading this morning and it says that paxil can make symptoms of IBS - D worse. I was prescribed Paxil 10 years ago went I stopped smoking and started having constipation issues. It did wonders. Apparently there are some new anti-depressants out there that help with diarrhea and honestly I am at that point where I will try anything. The GI has refused to try me on anything for Crohns because of the toxicity and cacinogen risks.
I know the feeling about tests coming back fine. The only tests I've had that showed anything was the colonoscopy others did not, and I've had them all. So I think that is why they keep saying its not crohns or not at this time.
What bothers me a lot is my phycologist says that she has other patients with crohns that are doing better than I am. That is scary.

thank you agian.
HI Dauting, the phycologist is a bitch for saying that, what is going on mental wise does not have any affect on you situation i am bipolar(manic depression) but only was diagnosised about 8 years ago and i have had crohn's since 1990. so as for mentally goes it's not all in you head. you body is telling you something is wrong. if i were you i would see a another phycologist who is compassionate about you doubts and feelings. she had no reason to say that about you. she is not a IBD specialist. People have different feelings and concerns and they have to be addressed properly. and she just adds to the problem thats my opinion anyway. i HOPE you feel better soon and get better results. best wishes.

Thank you for your reply.

Honestly I think I msunderstood her, she meant it by physical and not mental state. She has many patients who are doing better than me, she doesnt understand why the doctors don't want to treat me for it. My first doctor said it was Crohn's and now this guy doesnt want to believe it because none of my tests results have came back conclusive except for the biopsy of the ileum but yet it still came back non specific. The phycologist has helped me alot so far, she has mailed letters to my doctors and basically said that if things do not change fast I'm headed in a bad direction. Since her letter the doctors has pushed up my tests from 6 months till NOW. All requested tests have been done except for one the CT scan which is scheduled for August 19.

I'm so confused .. I really would like to know what is wrong with me. Why is it so hard to diagnose. My Gi said that without concrete evidence he doesnt want to treat it as such because of the potential side effects of the drugs, but isnt there any low dose drugs we can try??
HI daunting, there are low dose drugs you and try this only my suggestion you can try asacol and pentasa and diectel. anti-inflammation drugs and (dicetel anti spasmatic) they are less potient and less side effects to them. i don't know if they will do you any good. but, you can ask your doctor about them.At least that is what i am on and there are some meds for the pain instead of nsaids. maybe you can post your question on the site and see what the rest of the forum can help you out as well. best wishes.

Thank you Scott

Unfortunately he does have me on something like that, I have been on Salofalk for a little while now and don't see any change in how I feel at all.
Hi Everyone.

Had an appointment with the phycologist yesterday, she said after my Ct scan next week she will be sending a message to my Gi on how my mental state is doing and suggest that he sees me soon after the results are in. She said she is proud of me, Since I have been doing more and I'm actually getting out of the house when I feel well, but ultimately still find things really hard. She told me about a nurse that works in the hospital that was one of her patients, it took her 3 years to get diagnosed, 3 years!! Her Gi would do annual colonoscopies and one day found inflammation and told her it was crohn's. He believed it was from the start but wanted to make 100% sure before he would treat her with the big meds. She is now doing great. I hope my time will come soon.

Thanks guys for listening;