How were you diagnosed with Crohn's?

Digestive health
1

I'm sure you've answered it a million times on here, but I wanted to know: How long you've suffered with symptoms before actually telling a doctor?

Did you ever seek out a second opinion if necessary? Did you find it beneficial?

How long have you had Crohn's?

What method was used in your final diagnosis of Crohn's - as in when did they finally see it and tell you that's what it actually was?(colonoscopy, x-ray, ct scan, etc)

Were you ever incorrectly diagnosed with another disease before Crohn's? If yes, what was it?

Any other input you have would be useful. I find myself looking and looking everywhere online for answers, but I know that will only lead to more confusion. I'm in the middle of trying to find the answer as to what is going on with me, with my GI. I've had a colonoscopy done last September that showed Diverticulitis and a benign growth. Had recurrent symptoms, including blood in stool, so she had me try antibiotics again thinking it was Diverticulitis again. That seemed to make the symptoms subside for about 3-4 weeks. They came back again, and I decided to just do a liquid diet, and try to fix it on my own so I wouldn't keep taking antibiotics. I expressed this concern to my doctor, and she agreed she didn't want to keep doing that as well. So she ordered a CT Scan, which came up clear and an x-ray of my upper GI(small bowel series) that was done yesterday. She said during my recent appointment with her that my symptoms sounded like UC, and that it could have been in remission when I had my colonoscopy done. I know I'm posting here in the Crohn's discussion, but according to her she's trying to rule out both of them. I was hoping someone else's story might provide some insight. I don't know what it is, but I'd like to start getting better. 

Thanks

 

2

Took about five years, every investigation possible and was diagnosed with depression in the end!!!! Until I was rushed into hospital after two weeks bed bound with severe sickness and diarrhoea. Another two weeks in hospital undergoing all tests again, colonoscopy, barium meal, enema, cat scan, blood tests etc..... I was literally starving to death, ridiculous temperature......had to have an emergency laparotomy and that's when Crohn's was finally diagnosed!!! NIGHTMARES time of my life. That was nearly thirty years ago.

My Crohn's has always hung out in the terminal ileum, notoriously difficult to diagnose.....even nowadays apparently.

I have no terminal ileum left now after 4 surgeries over the years. I'm currently on HUMIRA which seems to be helping. Desperate to avoid further surgery.

I really hope you get to a diagnosis soon. Have they checked for inflammation with a Calprotectin test?? CRP in blood tests don't always tell the whole story when it comes to inflammation. Mine never have which has caused massive problems with diagnosis. Get the Calprotectin test done if you haven't already. Another test they can be reluctant to do is a SMALL BOWEL BARIUM ENEMA..... This is a very different procedure to a barium enema!! But it gets to that difficult area at the end of the small bowel.

Hope this helps

Just ask if you need to know anything else

Good luck

Hannah

3

Hi, I am siorry to hear that they are taking so long to diagnose you. This seems, unfortunately, to be quite common.  I have had crohns myself for 52yrs..When I was diagnosed I was very ill and they suspected that I had appendictis so I went into hospital to have it removed.  it was during this operation that I was found to be also suffering from crohns. I have to say that at that time I had never heard of this complaint. So although I dont like using the word fortunate in this cases it allowed them to diagnose me quickily. So an explority operation could be one way of establishing what it is.  I cannot believe that with all of the scans available they stiil cannot detect this problem.  There is now a new technique available for checking your gastric tract  that is more effective and that is by swallowing a capsule which has a camera inside of it, this way the whole tract is photographed so that no area are missed.  I attend my local crohn  & colitis society meeting every month and there are at least couple members who have undergone this latets inovation. It might be an idea to mention this option to your doctor

4

Well, my GI did a series of blood tests prior to my colonoscopy last year, but nothing turned up. She checked for H.Pylori, and all the usual suspects. I'm sure a part of it was to see if I was healthy enough to go under anesthesia. As for the barium enema... YIKES,... and also, I did just do the barium(small bowel series) but I drank it. A doctor(not my usual GI - it was the doctor on staff supervising x-rays, probably taking notes to pass along to my regular GI) A part of it was him watching me drinking it, then they took pictures. Then they waited for me to digest it and take more pictures. I'm not sure what the difference is, but hopefully she can get something from them. I don't feel good about her seeing anything since the CT scan from 2 weeks ago didn't show anything. Also, thank you so much for sharing. I really appreciate it. 

Did you have pain in the area of your abdomen where your terminal ileum is located? Most of my pain is my upper left. I get pain all over my abdomen when I'm digesting food, but particularly in that spot. Which is why my GI feels that UC could be the culprit, but she wanted to double check for Crohn's as well. 

5

It's ok. I guess it's just one of those things that's easy to miss, but it definitely gets expensive after a while. I did see a show(forget what it's called now) but it was a comparison of the medical system in the states versus other countries. One of the comparisons was the cost of colonoscopies in the states versus.... I think it was S.Korea? Anyways, for the same price of a colonoscopy performed in the states, you could travel to another country, stay in a resort, and take the pill you were just referring to which is basically a camera. Then you eventually pass it through your system. I don't know if that's something that is offered around where I am. I think if this carries on the way it is right now, then I will have to explore some other options. I'm partially to blame for waiting so long before I told a doctor about my problems. 

6

Hello,

 I was diagnosed with crohn's in 1963 now 53 years ago by an exploratory. My GI took a small bowel follow through and barium enemas and still couldn't find what was going on. As a young girl I always complained of my stomach hurting and going to the bathroom alot with pain. When my Doctor couldn't find anything wrong that's when he sent me to see a GI. During the exploratory the surgeon found the terminal ileum was where the crohn's was so it was taken out, lots of infection, took out cecum and part of ascending colon. Also appendix taken out.Have had four surgeries and all ileum. Last one March 2015 and then in August of same year had ct scan and found more inflammation and a narrowing. Lots of adhesions which comes with any surgery but this one is very painful pulling and tightening. I am on Azathioprine now for 10 months and it is working well for me no inflammation I am still leary of certain foods, corn, nuts, seeds, anything high in fiber so I pick my food carefully. Hope you get diagnosed real soon for crohn's is a life long road.

7

I'm sorry you had to go through all of that. That sounds like a very long and painful road. I have had symptoms going back about 8 years. The first time it happened I lost a lot of weight. Thank you for sharing your story. I'll post updates of what the doctor finds, if anything. Best of luck, and I hope you continue down a healthy path of remission. 

8

Hi there, hoping u get aanswers pretty soon.

I was diagnosed around November/ December 2008. I had my 2nd child via c - section in 2007 and shorly after the paons started. My Gp was insistent that it was relatedto the surgery and pkaced me on pain killeres. AAfterabout a month the symptoms wworsened and I began to loose

weigh , lethargy. I sa the Gp again who then reffered me to the gynaecologist after about 3 months. The gynarcologist saw nothing and was discgarged.

At a point I thougt it wad all in my head.the pson got worse and i couldn't look aftet my family. The whole of my maternity leave was spent in agony. So few weeks b4 I resumed wor , i went back tp my Gp requedting if she could refer me to the gastro team. Subsequent to this i had a small bowel study, gastroscopy amd colonoscopy b4 finally getting a diagnosis.

I started with pentasa, followed by metacapturine amd methothrexate injection. Sone minimal effect, others made the symptoms worse. Stopped medication for a year to have another cjild. Started back on infliximab but stopped 3 mobths ago as i had terrible backsin. About yo be started on Humira but surgery is in the pipeline as I have some strictures.

ItsThe Fitz, Gp's can easily fob you off byt perseverance & determinationis the name of the game.

Good luck

me petit.

9

Hi

My official diagnosis came 15years after my first symptoms. Just last week in fact.

When I was 22 I started out with a lot of pain in the stomach every time I ate, lots of acid and Intermittent diarrhoea and constipation. I lost about 2 stone (28lbs) due to only being able to stomach rice crispies with milk once or twice a day. Daily life was basically get up get my then 3yr old daughter to nursery then home to lay and cry on the sofa. My gp told me it was IBS and that I had to just get on with it. No tests.

A year on and my appendix ruptured so I had to have emergency surgery, which resulted in another emergency surgery 24hoirs later when it was realised my bowel had been perforated. They did a right hemicollectomy, and we hoped that was the end of it. Unfortunately the resection never healed. I had to stay in hospital for 13 weeks while my surgeon made me nil by mouth for 10 weeks as he said the bowel would heal itself if allowed to heal with no food or drink irritating it. 😤 I also developed fisrltulas to my abdomen.

The bowel that had been removed was tested and was apparently like lace and pathology said it was consistent with crohn's. Surgeon said I was too fat for it to be crohn's. I was very overweight even having lost the 2 stone. I went on to lose another 3 stone (42lbs) in hospital.

Anyhow I had to have another resection performed by a different surgeon and had a foot of small bowel removed too. This worked. And I was allowed home shortly after. Only going back a few months later for a fistulectomy.

For the last 13 years I've suffered watery poos up to 13 times a day but mostly only 6 a day. When I have to go I have to go right then! I just put it down to having less bowel for it to be absorbed and gp said most likely ibs. (New gp I switched practices)

A few months ago I went to see a new gp in the practice with really bad pains in my hands and wrists. He did bloods and it was found I had very low vitamin d levels. (Although I've since been told the pain in hands is a big indicator you can be having a crohn's flare up) I mentioned the diarrhea in passing and he insisted I be referred to a specialist as it wasn't normal. I said its normal for me though and I just learned to cope with it. But I went anyway, not really expecting them to fund anything .

Had mri, then colonoscopy last week. The Mri showed thickening of the bowel in the terminal ileum and small bowel. The colonoscopy confirmed this, along with ulcers. The stricture meant the camera couldn't go into the small bowel so they've put me on crohn's meds to reduce the inflammation before having another colonoscopy in a few months with a balloon to dilate the stricture hopefully.

I'm both relieved in a way to have answers after all these years but so so angry that even though the pathology showed crohn's one Dr can decide it isn't and just send me on my way. . The same surgeon (general surgeon) did my mums varicose veins years later and he actually said to my mum "I wouldn't have thought you were her mum as you're so slim!) He's sadly retired now as I would have like to come across him for an apology.

Hope you get some answers soon and you can Start on some appropriate treatment.

10

I'm so sad and to be honest, so angry hearing your story. Fifteen years of having to manage this disease without any medical support is nothing short of appalling. My wait was over five years and awful, but I didn't have children ( I was advised not to by my GP!!). How dare they tell you that you're too fat to have Crohn's or make comparisons to your mums weight. This flippant throw away remark took you away from a diagnosis when all the evidence was before them and quite probably seriously impacted on your quality of life. I hope at the very least you make an official complaint about the doctor involved, retired or not, you deserve an apology. Not only because he was very wrong about the Crohn's but because he discriminated against you due to your weight.

I hope you're getting all the love and support you need now and thank you for sharing your story. It's amazing how different each and everyone of us comes to our diagnosis. And it's completely amazing that the medical profession get away with some of their behaviour.

Good luck for the future

Hannah

11

Hi, I was  ill for a while didn't know it. Then, I started too lose weight and loss of appetite and running to the toilet 20 or 30 times after I did eat. I went to the doctor and she said it was due too heavy periods. So, she took bloods. Then, the phone went was rushed up too ward 15. They did some tests and found out I was anmenic and had crohns. I ended up having a emerancey operation 8 years ago. I have permanet ilestomy. I have crohns flare up now and on infusion treatments.

12

Thank you Hannah X I have a great family and friends. Lots of support.

I've actually been lucky I believe as I've not suffered terribly over the years, not in comparison to a lot of people with crohn's.

13

Wow, I can't imagine going through all that and having a baby. You are an amazingly strong woman. My follow up with my GI is next wednesday. I will post an update from her. Thank you so much for sharing your story.

14

Amen Hannah! Minelli, I'm so sorry you went through all of that. I'm starting to realize how sad a lot of these stories associated with diagnoses really are. Your strength to persevere through such difficult times inspires me to stay strong and keep moving forward. Thank you for sharing.

15

Thank you for sharing. I wish you good health.

16

Hi, thanks good health to you too.

17

I've had symptoms since 2008 when I had my first colonoscopy and I was told I did NOT have crohn's. Then in July of 2014, I was finally officially diagosed with another colonoscopy. Since then, I've seen a gastroenterologist and he's tried multiple medications. He finally started me on infusions of remicade, every 8 weeks. During these 8 weeks, I still have flare ups and take prednisone intermittently for them. This last time I'm on my third flare up since my last infusion so my dr started me on Methotrexate...which scares me. I've only had one dose, 20 mg every Friday and I go for an infusion tomorrow and then every 6 weeks instead of 8. I feel like he's tried everything and is just dealing with my flares as they come without really making an effort to stop them from happening, so YES I am going to another city for a second opinion on Thursday this week.

​Hope everything works out for you!

18

Mine is in my terminal ileum as well and almost and surgery for appendecitis mistakingly. Thank God they figured it out! I'm on infusions of remicade every 6 weeks along with Methotrexate once a week (20 mg) and prednisone (40-60 mg) when flare ups occur, which now is three times between infusions. I'm getting so tired of hurting all the time and being uncomfortable.