Hi im new here!

[Peanuttt]

Ok so im gonna apologize in advance for how long this is... Its been a difficult road to say the least!!:sign0085:

My "experience" started in Sept 2011 when I took a trip to the ER for profuse amounts of blood both in my stool & in the toilet which was accompanied by excruciatung pain in my left lower abdomen. Was given a CT scan w/ contrast which showed severe inflammation in the sigmoid colon. The ER doc said usually in someone my age (23 at the time) it indicates infection so I was given Cipro & Flagyl and was referred to a GI.

3 days later, I saw the GI who recommended an emergency colonoscopy for the next day at 6am since in those 3 days I lost 10lbs from frequent D. He took 8 biopsies during the procedure which came back negative & ruled out CD, UC,& cancer, yet told me that "hes seen people die from the level of inflammation" I had. Probably should of been Red Flag #1. He chalked it up to postinfectious IBS, gave me some Bentyl & called it a day... The pain in my left side never went away & by Oct I had lost in excess of 25lbs. After calling him numerous times about the pain, he recommended another ER visit. Had another CTscan w/ contrast that showed inflammation & thickening of the sigmoid colon. Once afain it was chalked up to infection & I was put back on Cipro & Flagyl for another 14 days... Back to the GI who refused to do anything to help my pain & stuck w/ the infection & IBS diagnosis even though my stool test came back negative for infection & parasites...no matter how many times I complained about pain he refused to look any further than am IBS diagnosis..

By this time, I was out of work for 2 months due to my symptoms & had lost even more weight. A friend of mine recommended I go for a 2nd opinion at the UPENN Infectious Disease department... it wound up being the best thing I did for myself. The doctor I saw actually took the time to listen to every symptom I was having...the nightsweats, the knee pain, skinrashes, 10 BMs/day, & pain. Based on my symptoms alone, he said he was 90% $ure I had CD. He sent me for an ASCA IgA/pANCA blood antibody test, which came back with elevated levels of the antibody for CD... He then referred me to a GI at UPENN & set up my appt for me. He told me to "call him when he was proven right."

Started seeing my new GI who did another colonoscopy, a barium upper GI follow through, a videocapsule endoscopy, a gastric carcinoid tumor workup, & another ASCA IgA/pANCA blood test. Everything came back normal until the blood antibody test, which came back SEVERELY elevated for CD. Was given Nucynta ER for around the clock pain relief and have been staying away from my many food triggers with NO let up in symptoms as well as a few new ones like waking up at night for a BM, and eye pain. I wound up in the ER again in Jan for pain & rectal bleeding. When my GI called me a few days after, he called it "your Crohns" but I have not been OFICIALLY diagnpsed bc there is no apparent damage other than inflammation that he can find & no ulcers besides the ones that show up in my nose & mouth.

Its now Feb & I am still suffering... My bloodtests for Addisons Disease as well as other autoimmune diseases came back negative. Is tgis something that happens to a lot of us? Has anyone else ever heard of "no damage no diagnosis?" Are there any other tests or trial meds I should be pushing for? Sometimes I just want to give up. I also suffer from panic disorder & have been on med for years for that but im sure it wont help my condition.

Also another question- since June 2011 I have averaged 6 to 8 BMs a day & have fissures & the whole 9 yards... For about the past week I have been extremely nauseated, unable to eat, distended in the abdomen & completely unable to make a BM without the help of laxatives. Should I bring this up to my GI & is it something I should be worried about?

Thanks in advance for ur help!! I am at wits end!!

 

[LJoy]

Peanutt, I'm new as of today and not sure what to say except it feels important to let you know that I read your note, and while I have no answers, I hope you are able to find support here.

 

[Cat-a-Tonic]

Hi Peanuttt, I see you already found the Undiagnosed Club and I responded to your post there, but I wanted to welcome you here too. My goodness, your story is not terribly different from mine! I even had Addison's testing myself (negative, of course). And it sounds like you have most if not all of the red flag symptoms for IBD (Crohn's/colitis) - weight loss, getting up in the night to poo, blood, night sweats - all of these are NOT part of IBS but they can definitely be part of IBD. I'm glad you found a doctor who seems to be taking you seriously and it sounds like you're on the right path to a diagnosis. As for the "no damage, no diagnosis", that's pretty much where I'm at too! I've been ill for over 2 years now, and they haven't even found inflammation much less scarring or ulcers in me. But my symptoms "fit" IBD, and more importantly, I respond well to IBD meds but don't respond to things like IBS meds. So my "official" diagnosis right now on paper is "chronic non-specific enteritis" although both my GI and GP have said it's IBD, they just don't know for sure which one.

As for your last questions - it sounds like you're having some symptoms that are new to you. I always call my doctor ASAP if I get a new or worsening symptom. It might be nothing, but it could be serious and you don't want to mess around. I know it's the weekend, but your doctor's office might have an off-hours answering service and/or could page an on-call doctor for you. If it gets really bad, if you have awful abdo pains or start vomiting or get a fever, anything like that, please go to the ER right away. It's possible you have something like a blockage or partial blockage, that could explain why you can't eat and can't go and are so nauseated. I hope it's not that, but better safe than sorry! At any rate, call your doctor and see if you can leave a message or have someone paged. Hang in there and please keep us posted with how you're doing. Feel better soon and I hope you can get a 100% diagnosis instead of 90%!

 

[bozzylozzy]

hi peanutt, welcome to the forum! im so sorry about the hassle you've had trying to get to the bottom of your bowel issues (no pun intended haha)
i too, last sept'11 (also aged 23 at the time) ended up in hospital with severe LRQ pain. and had a CT scan - they could see inflammation, and could feel a large mass of inflammation in my stomach. ive always had IBS with urgent diarrheoa all my life.. i spent 11 days in hospital on IV steroids and antibiotics. the docs said they too were 90% sure i had CD. ended up in hospital again one month later, but they ended up doing exploratory surgery and found my appendix in a mess with LOADS of scar tissue.

HOWEVER... that was last october and im still having problems. i recently had my 1st colonoscopy, and waiting for biopsy results. my blood tests show borderline inflammation levels whilst im in no pain right now.. i too have had joint pain and ulcers in my nose.. plus skin issues too..

i hate to go on about my problems,, but it makes me feel better to vent about it, and just thought it may help you to know that many of us are going through similar problems.

what is the next plan of action for your doctor?? and i would definitely tell him about your more recent problems with having to use laxatives

 

[Peanuttt]

Thank u all for sharing ur stories & support I will be calling the GI first thing in the morning tomorrow!! Trying to stay calm as my stress tends to make everything much worse (as many of you also know). To answer about my doctors plan of action-- he wants to redo the ASCA IgA/pANCA ttest again & has mentioned a possible Prednosone trial... Is this a good idea? I have never used this med before & ive heard mixed reactions to it... Any input is appreciated!!

 

[bozzylozzy]

i was on pred for about 3months in total. it worked for me and greatly reduced my inflammation. (im new to all of this) but from what ive read, prednisolone is not a long term treatment. due to its side effects and long term use can cause thinning of the bones i think. i dont think doctors would give you it unless it was completely necessary.

i ended up with massive mood swings and found it difficult to go to sleep. it can mask symptoms too, i had knee pain before i started it, which disappeared when on pred - but came back even worse when i'd finished tapering off it..

please keep us updated :heart:

 

[Cat-a-Tonic]

A trial of prednisone was what got my doctors to take me more seriously. (It works for IBD but not IBS.) I was only on 10 mg per day for 5 days, which is a really low dose and a really short time. They just wanted to see if it worked for me or not. And, it worked wonderfully! Those were the best 5 days. My symptoms disappeared and I had so much energy and felt like superwoman! After the 5 days, though, my symptoms came right back with a vengeance.

So, my personal experience is that it's beneficial to at least try pred for a little while and see if it helps or not. But be prepared for worse symptoms upon stopping pred. It sounds like BozzyLozzy's experience was very similar to mine!

 

[Angrybird]

Hello Peanutt and welcome to the forum. I am really sorry that you are having such a harsh time with things The prednisone should really sort the inflammation out and as already mentioned if you really improved on this then it is an indicator for the doc that you don't have IBS and hopefully they will start you on a treatment plan more suited to IBD. There are potential side effects but we are all different so you may not get some of them. I do hope things improve soon for you, please keep us updated on how you get on.

 

[Peanuttt]

Angrybird- whatt are some of the bad side effects to be aware of, if you dont mind me asking? I really have no experience with Prednisone at all so I am looking for the good & bad of it. Any help is appreciated!!

 

[Angrybird]

Hiya, I would say the most common side effects I know are increased appetite/weight gain (not a bad thing if your symptoms have caused a big weight loss), bloating around the face and neck, acne, mood swings, problems with sleep and the big nasty of the effect it can have on your bones. Long term use at high dosages can greatly increase the risk of osteoporosis. That is why you should always be on a calcium supplement when on this drug as if helps to keep your bone density where it should be.

This med is annoying in the fact that it works very well, very quickly for most people but it can have these side effects. The key is to be on it for as short a time as possible and get onto a more suitable long term treatment.

 

[Peanuttt]

Thank you for telling me! Definitely a lot to consider & think about. I think im so desperate for a diagnosis that I am willing to try anything LOL!! But I glad you weighed in on tgis as I would lile to make a smart and informed decision before I put myself into a situation that could possibly make me feel worse than I already do, so thank you!

 

[Gabismommy]

Hello an welcome!! I just wanted to chime in on the Prednisone topic. I have been put on it as well as Asacol and am about halfway through my taper right now. Today was my feat day of just 15mg on the Prednisone. I was started at the beginning of January on 40mg a day. It took away my stomach cramping/pain, my body aches/back aches, and night sweats. I did experience the increased appetite, I swear I could eat anything in sight. I gained 15 pounds back on which they wanted because I had lost over 30. However for about a week it seems my Crohns is acting up a bit again. Slowly the cramps and back aches are coming back. Quite a few people have said it may be due to having the Prednisone dose lowered. I had quite a bit of inflammation in my stomach when my colonoscopy was performed as well. I will be seeing my GI on Friday and asking him about the taper in more detail. I felt so sick when he diagnosed me that I asked absolutely nothing. :/

I also have heard some people experience the 'moon face' as well as terrible mood swings. The bloating I have not had and the mood swings I have I think are more due to stress and not feeling well more than medicine. I have experienced quite a bit of insomnia as well but I am not certain the Prednisone is to blame. My doc has me taking prescription strength Pepcid as well to protect my tummy from the Pred. Hope that helps..

 

[Peanuttt]

Thanks for the welcome & the advice Gabismommy! I hope you can get some much needed relief again soon!! Its awful feeling sick!! Maybe this isnt the forum to ask about tgis, but... Most of my most botherrsome problems are the EIMs like pains in my knees and shoulders (besides the obvious of tummy troubles LOL)... Ive been wondering if there are any natural supplements that work. Have ypu tried anything like ginger, aloe vera, etc? And if so, was ur experience a positive one?

Hang in there!!

 

[Angrybird]

Hi Peanutt, I would check out our diet and supps sub forum as if there are natural supplememts that work for some people here then this is where I think it would get mentioned, it should also say what are definte no no's. Hope this helps!

 

[stickman7755]

Welcome to the party!! Don't be afraid to ask questions here!!!

 

[M2M]

welcome Peanutt.. ask your doctor about Entocort instead of Predisone... My daughter took Entocort from FEb of 2011 and started tapering down in late August and was off by Nov 1st. I think it has less side effects.
supplements may help.. my daughter was diagnosed last year in FEb.. and as of right now.. (knock on wood) she is off all prescription meds.
she takes Market America OPC 3 and Isotonix multivitamin. also takes Omega 3 and Boswellia.. I heard about the Boswellia on this forum... 6MP and Pentasa made her very sick

 

[Peanuttt]

Thsmanks M2M!! I have never even heard of Entocort before your post!! Are the side effects the same or less than Prednisone? And have you ever heard anything about whether Ginger is beneficial for people w digestive diseases??

I apologize for all the questions... I'm new to this and am trying to learn as much as possible so I can make the most informed decisions as possible. I have also been looking at the supplement forum but have yet to see any mention of it at all!!

 

[Gabismommy]

I have never tried supplements either but have been considering it, I'm still new to a lot of this. I feel a bit better today just so tired!! Ah!! Thank you for the well wishes and I hope things go well for you also!

 

[M2M]

Entocort is a newer drug; less side effects. My daughter never got the moon face they talk about and you still have to get weaned off of it. But her specialist said it definitely has less side effects.
if you are interested in trying to find good supplements; send me a message...
I am not a seller of the company; but can let you know how to get them.. very easy. internet based company but very reputable.
Market America is the brand of the OPC3 and the multi vitamin she takes.
these products are granular and you mix w/ a small amount of water and take them 1st thing in morning. they absorb faster and easier b/c they are in water and that is what can get to your intestines. that is where you absorb your vitamins that is why so many Crohns patients are low in the vitaimin levels. if your intestines are inflammed then they won't absorb as much.
she takes Standard Process Boswellia; that has to be taken w/ a meal to absorb the best and she takes Omega 3; which Market America sells a wonderful one.
Also Aloe is good but you have to buy quality.. and ginger tea can help upset tummies. last year when my daughter got diagnosed; my nerves went to H*** so I actually had to go on the same kind of diet that she had for a bit. Tea helped me alot and Acupuncture treatments. I can't say enough about acupuncture. I know this all sounds time consuming.. however if it can lead you out of the pain and all.. it is worth it... it is like a secure habit now; my daughter knows she has to take these supplements and take care of herself. And we no this is no guarntee.. but for now its working and we are good..
God Bless and take care Peanutt; you are not alone in this struggle

 

[stickman7755]

I highly endorse entocort over predisone. Predisone kills your joints. Entocort is a localized steroid. My Dr. didn't mention Entocort even after I mentioned all the joint problems I was having.

 

[M2M]

and you have to remember that joint problems come along with Crohn's.. its inflammation.. you have to take care of your joints and that is where the Omega 3 and the Boswellia come into play.. and the OPC3.. all have anti inflammatory agents. Entocort is much better than Predisone...
that is where this forum is helpful.. b/c you learn new things and if you don't know about it; you can't suggest it to the doctors. it helps having some knowledge