Newbie...My story/waiting on diagnosis

[HannahN]

Hi! I am fairly new to the whole IBD world, and have been coming to this forum a lot over the past few days. I thought I would post my story and see if anybody can offer any advice/tips, so here goes:

My name is Hannah, I am 23 years old, happily (recently) married- our 1 year anniversary is June 25th- and have been dealing with stomach issues since October 2011. I thought at first that I just had a stomach bug or something when I noticed low grade fever and diarrhea. 2 weeks of it turned into 3 months, and I knew something wasn't right. So, after moving to a different state after we were married, I began the process of trying to find a doctor. Finally found one, and she thought it was gallbladder related. Had it checked, was working almost 100%. January of this year, I was referred to a GI. By this time, my days were almost completely spent at home, unable to go anywhere or do anything. Grocery shopping had to be timed just right or cut short due to getting sick, and severe pain. I had a terrible time with that doctor(uugh!). Normal colonoscopy, normal countless things of bloodwork, every single other test came back normal. She called me one day, told me she *thought* it was IBS, that I should NOT be having fever (as if I could control that) and gave me Bentyl. I had bad side effects from that and stopped taking it- and it NEVER changed any of my problems.

Finally, in March of this year, I heard from family about a doctor at Vanderbilt who had helped someone's son tremendously. So after a few more tests with my GP, she referred me to this specialist. AND she is FABULOUS!:ysmile: My first visit with her, she immediately noticed my fever. Ordered an endoscopy, several other tests and bloodwork. THIS time, my blood work showed inflammation and an increase in autoimmune levels(? I'm not sure how to put that) I am waiting for biopsy results and a few other tests, but I am hoping and praying SOMETHING shows up. She told me if everything else comes back normal that she will refer me to a rheumatologist because it is definitely some kind of autoimmune issue. If it isn't UC or Crohn's, I'm curious as to what type of autoimmune issue it IS. Anyone else have a doctor tell them this?

During all this, my husband and I are in the process of moving (again) because he got a new job. We dated 3 years long distance, and after being married almost a year, are kind of back to long distance-marriage for a while. He is graduting this August, working for a company 2 hours and another time zone away, so I see him on weekends right now. Sadly, our plan for me to work while he finished school didnt work out when I got sick a couple months after our honeymoon. So he has been working and classes. Needless to say our 1st year of marriage has been a difficult one. I feel so bad that I haven't been able to do much, which adds to the already depressed mood I'm in from being so sick. My husband has been so sweet through all this, but I know it's been hard on him. We are both strong Christians and have relied on God, faith and prayer to help us through. Some days, however, I wake up hoping this is all a bad dream.


Any advice????? Thanks in advance!!!!!

 

[EthanPSU]

Hey Hannah, welcome to the forums. I know it seems like it sucks at times and especially in your situation. First off, on your personal side, I know how hard a long distance relationship is, I did one for about a year and it sucked, I can only imagine how it is if your married.

On the crohns side tho, When your biopsy results and other things come back, hopefully this new doctor will be able to diagnose you properly.

Have you mention crohns or IBD to her? If not you should so she can look at that more in depth. I'm not really health or body savy, don't know much about other autoimmune issues or diseases. But again, hopefully a correct diagnose will come back soon.

 

[Trysha]

Hello Hannah
Welcome to the forum.
It is really good to hear that you have a good GI and it appears you are beginning to get somewhere with the investigations..
It sounds as if there might be Crohns or UC in the near future .With a good GI this will be brought under control sooner than later.
Do let us know how you get on, please keep us posted.
Feel better soon
Hugs and best wishes
Trysha

 

[HannahN]

Thank you Ethan & Trysha! After checking my gallbladder, all 3 doctors have said they suspected Crohn's. My Vandy GI is almost 100% sure thats what it is.

When it all first started, I lost about 10 pounds in a week and a half. After being so sick for 6 months, I put myself on an elimination diet and was able to determine some trigger foods (most meats, any raw veggies esp. lettuce, anything spicy or high in fat) and started to eat more carbs. Because of that, I've started gaining weight. I rarely have much of an appetite, and most days food doesn't even taste right/good, but I know if I don't eat I will have little if any energy.

The past 9 months have been a nightmare, I can't imagine the awfulness some of you go through for years before finally finding a doctor to really help. I have been through dehydration and such awful fatigue that I could barely get from the couch to the bathroom that was in the next room. This is my 2nd GI. And she has already been amazing!
To those of you who are undiagnosed and still searching for help, keep looking! There ARE doctors who can and want to help you!

 

[David]

Hi Hannah and welcome! I'm so glad you found an excellent GI who you are comfortable with. That can make such a huge difference. If you're game, I'm sure others would appreciate you adding her to our doctor directory (see my signature).

We also have an undiagnosed club you may want to check out.

Please keep us updated as to how you're doing and let us know if there's anything we can help with.

Best of luck to you!

 

[tots]

Hannah-
Welcome to the grp.
Although I am sorry your sick and even need the forum but, you have found a
great group.
When I was originaly diagnosed all my BXs, blood work were negative. I was
diagnosed through an upper GI. The barium was gross but, it led to my DX.
Good luck I hope you get help soon!

Lauren

 

[Angrybird]

Hi Hannah and welcome to the forum :bigwave: Really pleased that you are now seeing a GI that you are happy with, that can make such a difference when you are going through the diffcult time of trying to find out what is going on. I hope you can be getting some definitive answers soon - pls keep us updared on how you get on.

AB
xx

 

[HR_85]

Hi Hannah,

Welcome to this site, I recently joined too. Ive been in that place where I am awaiting biopsy results. My advise would be really careful what you eat and stick to an alkaline diet, free of salt and spices. Its tough to know the severity without knowing what the diagnosis is. I found Manuka honey to be a great asset, and probiotic yoghurt.

H x

 

[HannahN]

Thanks everyone for the encouragement and advice! This may sound bad, but sometimes, it's difficult to get people who have good health to understand just how bad you really feel. It's wonderful to have support from people who are in the same place you are!

I got my results back last week and was a little bit devastated to learn that everything came back normal as far as the biopsy and other tests, but I had some not so good blood tests come back: they showed highly elevated inflammation SOMEWHERE, and positive for ANA, with a titer of 1:160. Because of this, my GI is sending me to a rheumatologist. Needless to say, I burst into tears when the nurse called me with the results. I was SO hoping for help and an answer!!!! Has anyone else had test results like this????? From what research I've done, it seems like it may be lupus instead of crohn's. :confused2: I don't get to see the rheumatologist until July 25

Do those blood results show up with crohn's too? I have read that they are 97% common in lupus patients. Anyone have any similar situations???? I feel so lost!!!!

 

[David]

Hi Hannah,

People here do occasionally have increased ANA. Heck, my ANA was elevated.

I can understand your feeling lost and wish you didn't have to wait until July 25th. They can't get you in sooner with someone?

 

[HannahN]

Not real sure of where to post this, so I'm going to add it to my story.

I've tried my 3rd different antibiotic which produced no improvements. My rheumatologist said she wasn't sure why the GI referred me to her, and saw no reason for her to really see me. (So I wasted a 3 hour drive to see her for 20 minutes, and told to go back to the GI). I am also trying a probiotic and Levsin. No help from Levsin either. I've only taken the probiotic a few days. Even though I am really careful about what I eat, there are days that it doesn't matter. I have so many symptoms of Crohn's that I've been told don't occur in IBS, but as of now, my GI "thinks" I may have post-infectious IBS. Here is my number one question: Is there any certain thing that just absolutely 100% qualifies you as having crohns and not ibs? I have fever, can't eat much, blood signs of inflammation, blood when I use the bathroom, extreme fatigue, sharp pains, nocturnal episodes of diarrhea. ANY advice?????

 

[HannahN]

Also,has anyone ever had deep ridges in their nails? I have them on most of them suddenly but one nail has them more prominently.

 

[Avw]

I noticed you said you have nocturnal episodes of diarrhea... I'm not sure if this is true or not, but I have heard that one of the main differences between IBS and Crohn's/UC is that (supposedly) IBS will not wake you up with diarrhea in the middle of the night, but Crohn's or UC will. I read this on the forum somewhere... have no idea if it is actually true or not. Someone with better facts than I will probably come along shortly and let you know though.

I really hope you can get some answers soon and get on the road to feeling better.

 

[dannysmom]

I also read that nocturnal diarrhea and bleeding is NOT IBS. Sorry you still have no answers or help ... I totally understand as my son is undiagnosed too. Did the rheumi take any additional blood tests? We've been to a rheumi after a slighty elevated ANA, like you, and he ran a bunch of other blood work .. al negative tho. Do you have joint pain too?

 

[lola99]

Maybe you need to get a second/third opinion. I started getting sick in 06 and first i was told it was ibs/spastic colon,etc. I finally got bad off enough to be properly diagnosed in 2011. I had a egd/colonoscopy,crp blood test,small bowel series xray. My scope came back positve for crohns with the "bumpy" looking colon walls in my ileum. I never really had bad diarrhea but i know alot of "crohnies" doo. I had no other symptoms except terrible cramps and a blockage that sent me to the hospital. My crp was just slightly elevated.

I started getting sick while my husband and i were still dating and have been sick off and on for are entire marriage(7 years). I have been at my worst the past year and half and just started a new med. But we have prevailed and love each other just as much as in the beginning. Crohns is really depressing and with any autoimmune disease its really hard to accept. I cried none stop for months and i still cry when i have to be reminded of it (doctor visits/flares). Its natural hang in there.

 

[HannahN]

Thank you all for your support! Things have been even more difficult this week as I suddenly caught a cold and have been dealing with that and the usual sickness....and my birthday was yesterday it was a rough day.

@Dannysmom: They did extra bloodwork before I even got there (I don't really know how that happened. I guess they went ahead when I had a positive ANA.) and it was all negative. I'm sorry to hear about your son; seems like we're about in the same boat! Anything you know of that has helped/made things worse? I know I do much better when I just don't eat at all, but that means severe fatigue! It's a vicious cycle!

@Avw and lola99: I've also read countless times that nocturnal diarrhea does not occur in IBS. I've had so many tests, I can't believe they haven't found SOMETHING. Is it possible for crowns or UC to be invisible or in a place that can't be seen with medical devices/tests/scans???? I was kind of doing a little better for a little while, I think (but that was mainly from eating the same few "safe" foods over and over or not eating at all), and then it all came back suddenly.

it's been a rough week.

 

[tots]

IBS does not bleed or wake you up. It does not respond to
Prednisone. You do not experience weight loss or a fever.

The medical community needs to get it together there are
to many people that experience a horrible road to a dx.


Lauren

 

[NewRoad]

Hi Hanna, I just joined this site yesterday, I've been feeling poorly for quite some time, kept gettiing a UTI diagnosis until I was in so much pain I went to the ER. They said it was enteritis and sent me to a gastroenterologist. Over the past two weeks I've endured many, many tests and finally go a diagnosis of Crohns. I am on two antibiotics, (Cipro and Flagyl), prednisone and Pentasa. These meds finally calmed down the inflamation and pain. I go back to the doc next Monday to get a final say on all this and how to treat it. It's a tough road for me, who has been so healthy all my life. (I am 53).

Hang in there, you will find the foods that will make your gut happy with trial and error. I'm finding that several light meals a day works MUCH better than a big meal. I'm lucky, if you can call it that, in that I am the fourth person in my family to contract this poopy disease, so I have lots of support and info I can lean on. This site seems to be very informative and supportive, check in often, I do, and I was never a "chat" person either.

Best of luck to you.

 

[ginnyrdhap]

Hi,

I just posted my story today after a fews weeks of pouring over a lot of the posts in this amazing forum. I just read through your story and the tests you've been through in the past few months. I know how frustrating it is to be told that things are NORMAL, when you know something is terribly wrong. It's becoming a bad word for me.

Just wondering if you had the capsule camera test? Some call it the "pill cam".
My GI said that if UGI and colonoscopy were inconclusive that he wants me to do the capsule. The camera you swallow takes pix all the way down your GI tract. Seems like a good idea to see places that other tests can't get to.

Good luck to you!

 

[HannahN]

@tots- I am almost certain I don't have ibs...and I too think I (along with so many others) are on a crazy road to a hopeful/true diagnosis. I guess they have to have "physical" evidence of something before they will for sure diagnose you with something.

NewRoad- Welcome! I am so sorry you have been on this journey too Thank you for your words of encouragement! I hope they can find some medicine to help get you back to more of the healthy life you're used to Let me know!

ginnyrdhap- It is definitely, as you know too, it is incredibly frustrating. I've been at this for just at a year now and had little to no improvements. I have doctors who "just know" it's crohn's, but find nothing when they look for it, so I keep getting medicines that don't help thrown at me. It's never been suggested to me of anyone trying the pill cam-sounds really interesting! Let me know how it goes and if they find anything!!!


I emailed my GI on Sunday to let her know the antibiotic and Levsin she presecribed hadn't changed; the antibiotic was for 10 days and I was told to try the Levsin for about a month. So I tried it for almost 2 months. No change. I also now have what I am guessing are Beau's lines? I told her about that too. She responded with "I'm not sure what to make of that. There are no signs of anemia. Do you want a dermatologist referral? Have you been back to your PCP?"
ok, from what I have read, beau's lines are the result of a sever illness or injury. I've had no injury, so it must be from illness. Could ibs cause Beau's lines?
Where I live now, it is impossible to see a good doctor without having to wait 3 to 4 months. I'm just not sure what else to do now and it sounds like my GI doesn't either. Feeling a little hopeless today....

 

[foodlady]

I'm so sorry. I am in a similar boat and have been hanging onto this forum for help, advise and encouragement for months now. I would make an appointment for whatever you can get, see if they will put you on a wait list for canceled appointments even. I had been trying to get through to a doctor's office for a new consult for a while and by some miracle scored an appointment within a week. I see a new GI tomorrow. There's hope!

 

[ginnyrdhap]

Hi HannahN,
I'm surprised the your GI hasn't suggested the pill cam yet. The movie that is created from the camera that goes through your GI tract is 3-4 hrs long and is time consuming for the doctor to watch. Maybe some docs are not thrilled about doing the test because they have to find time to watch the movie. It might be worth calling your Gi and requesting. Also, have you been tested for SIBO (Small Intestinal Bacterial Overgrowth). There are many conditions that can create this problem, IBS and Crohn's just to name two of them. I have had it twice and was treated each time with an antibiotic called Xifaxan. It stays in the small intestine and does not get systemic. It helped me with the acute symptoms. The underling cause still needs to be diagnosed and treated, but it can provide some temporary relief to some people. A hydrogen breath test is what you need to take to confirm the SIBO.

The Beau's lines sound to have many possible causes, but Crohn's is definitely one of them.

I had my UGI/SBFT xray study today. It wasn't TOO bad, but not fun either. The radiologist needs to review the pix later today, but he said that everything seemed normal. Oh, that darn "N" word again. Well, I'll check it off my list as another test completed and more things ruled out. My colonoscopy is not until the 26th, and will only do pill cam after that if nothing is found. But I will definitely let everyone know the results.

Take care and keep searching!

 

[NewRoad]

Hannah, thanks for checking in, may you find answers soon also. I got a call from the GI today, reminding me to come in Monday and to tell me the small bowel follow through also indicated Crohns. I had a bit of a rough day today, emotionally, but I have the greatest sister in the world and she cheered me up. I'll know more Monday what the final word is and HOPEFULLY get a treatment plan! Take good care, chin up, and keep checking in! NewRoad.

 

[chrizzy]

Hello everyone. I do not have Crohn's, but I am a supporter. I worked with a young lady, then 19, who was diagnosed with Crohn’s. She was the sweetest girl, but was always sick. She saw several doctors before being diagnosed. It is unfortunate because she missed so much work they fired her. I hadn’t thought much about it since then, but a friend told me about this charity half marathon for Crohn's and Colitis. The group I am running with is Team Challenge and they are running n behalf of the Crohn’s & Colitis Foundation, which I did not know existed.

Reading some of the stories, I couldn’t help but think how many doctors you visited, how many good and bad days you have, what type of support you have, why no cure has been found, and how many organizations support this cause. I never knew what was involved with having Crohn’s but I am learning a lot from Team Challenge and the people in this forum. You all have very different stories, sad but so inspirational. My heart, thoughts, and prayers go out to you as you take on this disease. I will continue to read and learn more while I prepare to be a supporter and help raise money for Crohn’s. and complete my first half marathon. (Pray I don’t fall out!)

If there is anyone you would like me to run for or you would like me to run for you, please let know. If you want more information on Team Challenge, the Foundation, or you want to keep track of how much money I’m raising connect with me on Facebok-Christina Wade

I hope to chat with some of you and learn from you.

Thanks for listening to one of your many supporters.

 

[dannysmom]

@Dannysmom: They did extra bloodwork before I even got there (I don't really know how that happened. I guess they went ahead when I had a positive ANA.) and it was all negative. I'm sorry to hear about your son; seems like we're about in the same boat! Anything you know of that has helped/made things worse? I know I do much better when I just don't eat at all, but that means severe fatigue! It's a vicious cycle!

There are very few things that seemed to have helped. Grilled chicken and carrots are his safest foods. Bads foods for him are high fat meats (pork, some beef) and simply eating a large meal. He does much better with smaller meals. Prednisone made things much worse ... he also ate so much while on it. His D got much worse after trying vancomycin for 2 months. He slept on the bathroom floor for a few months. Things are slowly improving. After 2.5 years of being sick, with fatigue the worst symptom, he started to force himself to exercise every day as he realized he was getting physically very weak. I can't help but think the exercise has helped as he is ~75% better than where he was last year. Have you considered trying LDN? Danny tried it bu only for one month and you need to give it about 3 months. We plan to try that again.

 

[chrizzy]

I noticed you said you have nocturnal episodes of diarrhea... I'm not sure if this is true or not, but I have heard that one of the main differences between IBS and Crohn's/UC is that (supposedly) IBS will not wake you up with diarrhea in the middle of the night, but Crohn's or UC will. I read this on the forum somewhere... have no idea if it is actually true or not. Someone with better facts than I will probably come along shortly and let you know though.

I really hope you can get some answers soon and get on the road to feeling better.

Can you tell me how the stem treatment will help?

 

[HannahN]

From the ones waiting to hear back from doctors, how did it go? Have you all learned anything?

Last week I was really sick with D, no matter what I ate. This week, Ive lost my appetite and had sever nausea, just like it was when this all began. Nothing sounds or tastes good anymore unless it's really really salty or sweet. And now I start the process of trying to find a new primary care doctor who can refer me to a specialist, but I'm not sure what kind: internal, a 3rd GI, infectious disease specialist? I need someone who will be willing to try me on a medicine other than ibs meds and antibiotics. Anyone had any luck with a doctor other than a GI?

 

[NewRoad]

Hello HannahN, I heard from my Doctor Monday, most of the tests are back and I got a 'title' of Severe Crohns of the Small Intestine. The Pantessa isn't working, they are thinking about Humira. I am happy with my GI Doctor, after a whole summer of seeing other doctors and being mis-diagnosed. I was on two antibiotics for 10 days, Flagyl and Cipro, just to clear up the infection. I'm now on Prednisone and Pantessa, for now, until the doc and I decide on Humira or something else...

I've found that many small meals works a lot better than a big meal, take that anti-D med, immodium works for me. I don't know a lot about Crohns yet but I do know it's an auto-immune disease, not an infectious disease. A competent GI doc is probably the best path to follow. Are you near Nashville? Vanderbuilt has some really good doctors.

Keep posting, you and I seem to be at about the same place diagnostics wise, we'll help eachother out! BIG hug, chin up, remission is in our future!

 

[HannahN]

Haven't posted in a while; the holidays and a death in my husband's family have kept us busy for a while. After 5 months of trying to find a general physician, I found one who I am HOPING and PRAYING will be the answer to all this craziness of stomach etc problems. I've seen some of my blood results and for a 2nd time, my SED rate has been high. My vitamin D was also really low, which I've read can cause some stomach issues but not the low grade fever and a few other things. She is suspicious of an allergy so I have to have allergy testing now,the lupus/autoimmune possibility is back and I'm being tested for it again, she's suggested seeing am infectious disease specialist (2nd doctor to suggest this) and she does NOT think it's just ibs!!!! FINALLY, a doctor who isn't throwing me away (yet haha)!!!!

My diet has now started causing me to gain weight (UGH!) because its a lot of carbs since a lot of other stuff I can't have. I feel like I've been on a roller coaster for almost 2 years (and I know so many others have dealt with it longer). I'm so ready to get better!!!

 

[David]

Thanks for the update Hannah. I'm sorry to hear about the death in your husband's family

What was your vitamin D level at and how much are you now supplementing?

 

[dannysmom]

Thanks for the update. Please let us know how your appts with ID and rheumi goes. I am glad you found a doctor that seems caring.

 

[HannahN]

Thank you @Dannysmom and @David. My vitamin D has been low in the past(about 4 years ago) but went back up after taking it for 6 months. My level was 15 this time, but I haven't been told how much to take yet. I know low vit. D levels go hand in hand with crohns and other autoimmune diseases so I'm hoping this doctor can look past not visibly finding crohns and put 2 and 2 together to come up with some sort of treatment for me.

 

[HannahN]

I am taking prescription vitamin d now; 50,000 iu 1/week for 10 weeks and then 1,000 iu once/day.

 

[David]

Sounds good Keep us updated on how your levels progress on that regimen!

 

[HannahN]

I finally received a diagnosis...well, unofficial, but at least I have a doctor who is willing to listen and help! I went to the family doctor I have gone to since I was 6 and who I went to first when all my symptoms started. From the get-go, he has said Crohns, but to find a doctor closer to where I lived. Tried that....6 doctors later and multiple blood tests with no medicine to help, I went back to him. He told me with my consistent blood results showing inflammation, positive C-reactive protein and high ANA, when they cant find the source of these results, and being in my mid 20's with my symptoms, that MOST of the time it IS Crohns and the symptoms should be treated regardless of a physical finding of it. I WANTED TO RUN ACROSS THE ROOM AND HUG HIM!!!!!! SO, I was given a steroid shot to help clear up my eczema (he also noted there is a correlation between eczema and Crohns) and said that if it WAS Crohns, the shot should help my symptoms. Guess what: I've felt better in the past week than I have in the past 2 years! Now I have to go back and be put on some type of steroid for a couple months. I am BEYOND happy that I may be getting back to normal, even though it's with the help of steroids!!!!!

 

[David]

Hi Hannah,

Do you know what kind of steroid it was they shot into your arm?

 

[dannysmom]

Thanks for the update. I am so glad your original doctor helped you and the steroids helped!!!! Great news.

 

[HannahN]

I have no idea what it was. I have to get them every couple years 2-3 times a year for my eczema. It's been almost 3 weeks since I had the shot and I've felt SO much better. I know it will wear off soon though

 

[Mattie]

Hi Hannah

I'm new to this group and have only just found your story. It must be an absolute nightmare not having a diagnosis after this length of time, and my heart goes out to you.
I noticed that someone asked early in the thread if there was a test that could rule in or rule out Crohns or UC? I would suggest you ask your specialist to perform a faecal calprotectin test. They're very simple to do and relatively inexpensive- at least in the UK. But they are the gold star in diagnosis. There's plenty about them on the web if you're keen to get more info.

Best wishes
Mattie xx

 

[HannahN]

Went to another GP last week, and was tried on methylprednisolone (gen. for prednisone) and my stomach issues actually went away! I doubt it will last very long, but I still have low grade fever. She did a lot more bloodwork, and everything came bac normal except a high sed. rate (the 4th time, I think, it's been elevated) So now, I am being sent to an infections disease specialist. Although the stereoid pack worked fabulously, she said she didn't want me to take it long-term. I showed her the dents I've had in my nails that came up shortly after all this started, and she had no ideas. Stereoids worked, shouldn't that mean something???????

 

[dannysmom]

I would think steroids working should mean something too. Maybe she will be willing to try another medication that can be used long term. I am happy it helped your stomach issues!