New member, undiagnosed, my story advice please.

Hi everyone I'm Jade, I was wondering if anyone could help and advice please,
It's all stated 2 years ago, I had intentionally lost weight and due to eating more fiber I began having urgent bowel movements but at the time though nothing of it, and just got on with it. Then 13th August 2016 I was admitted in hospital with a perinal abscess. I had emergency surgery to remove it. It then took until end of October to heal because of two infection and 3 weeks of antibiotics to help. Then from end of October I began having diarrhoea every bowel moment with agonising tummy pain and mucus. The pain is so bad i could climb the walls. When this happens I can be on the toilet anything from 2 hours up to 5. Its effecting my work and social life and my relationship as I never know when this is going to occur and avoid going out if I can. I have been going to the doctors a lot from then till now, but I was being fobbed off with all sorts. Theses same symptoms continued until early February this year. I had about 4 weeks break. During the break I went for a following up ultrasound from my op and they confirmed there was no fissure and everything had healed up nicely. After that break it occurred yet again but this time a lot worse. All the same symptoms as above accept now there's blood there aswell as mucus. And I'm also getting boil/abscess painful swelling around my bottom on my scar. There is pus coming from there on and off too. Yet again another visit to the doctor this time it was my doctor instead of locum. He requested a blood test. The test was done and the result came back, my white blood cells are high. Which I don't really understand what this means. I was told this yesterday and that I do need the camera test but the waiting list is atleast 6 months. Iv already waited 7 months from October, I can't take more not knowing what it is. I was wondering if anyone with crohns thinks my situation sounds as though it could possibly be crohns as I can't relate to anyone around me and feel lonely and isolated with it. I feel like I'm not being taken seriously and that people don't believe me at work etc. I'm also not sleeping well because of panicking I'm not going to be ready for work on time if it happens. People around me just don't understand because I can be ok one day and be so low the next.

Sorry for such a long post, all advice will go much appreciated

Jade

Welcome, Jade. I am sorry for all you are going through. Maybe you can contact your doctor's office and ask if there are any cancellation for the test then maybe they can write you in. It could be Crohns but I am not sure. Everyone's symptoms can be a little different. There are a lot of people on here can relate to what you have mentioned about feeling that no one takes you seriously. I hope that you can get a diagnosis soon. Let us know.

Hi Jade,

Welcome, I am sorry to hear of all the troubles you have been through. Yes you may have some sort of IBD, possibly crohn's. The white blood cell count is usually high due to some type of infection. I think you need to try to get in to be seen by a doctor as soon as possible. There could be further damage going on inside of you that you are unaware of. Mucus is a sign of inflammation in your bowels and something is definitely causing it. There are a lot of people here who can relate to what is happening to you. I too have had similar problems in the past. I am undiagnosed as well and have had similar surgeries to what you have described. If you like you can pm me or we can talk on this thread too.


Welcome again and best wishes,

cmack

Hi Jade,

I'm Zachary.

I was recently diagnosed myself after more than 20 years of misdiagnoses and terrible bouts of similar symptoms and I'm only 35 now. This does sound like Crohn's disease IMHO. I'm sure you've read what the internet says are the common signs of Crohn's and that's what has led you here. I've had two large perianal tags (that I thought were hemorrhoids at first) and had them removed; the recovery was terrible!! But that was almost ten years ago, long before I was diagnosed.

The pain, frequent bowel movements, diarrhea, mucus, and blood are classic inflammatory bowel disease signs and symptoms and there's a good chance you could have Crohn's disease. An abscess though, is caused by a bacterial infection, typically Streptococcus (strep) or Staphylococcus (staph) species and sometimes some of the normal bacteria that live in your intestines. You may have a recurrence of the same infection from before as evidenced by the pain, purulent discharge (pus), and the give-away is the high white blood cell count. Your white blood cells (AKA - WBCs) are the cells from your body's immune system that fight infection; the lab count will rise to particular levels given an infection. The WBC count can also rise from inflammation and steroid use (e.g., prednisone).

I would make an appointment with your doctor ASAP and request a referral for a gastroenterologist (if you don't already have one). Explain to the GI doc your symptoms and keep advocating for yourself until you get a colonoscopy. Another blood test your doctor can do to evaluate the degree of inflammation in your body is call C-reactive protein (CRP); it doesn't tell us that you have Crohn's disease, but it is a marker for how much inflammation is going on in your body.

Also, your primary doctor should prescribe you a course of antibiotics, something stronger than last time, along with referral to get the abscess drained (This sounds like a recurrence and should be treated more aggressively). There are no standard antibiotic regimens recommended in the medical literature but a combination of broad-spectrum antibiotics to cover anaerobic and gram-negative organisms is appropriate (your doctor will know what this means)to include something such as a COMBINATION of ampicillin/sulbactam AND either metronidazole OR ciprofloxacin OR clindamycin.

I have to add an important note about the antibiotics. Since you have taken them before and the issue didn't completely resolve, there may be a degree of antibiotic resistance from whatever is causing this abscess so a more broad-spectrum of antibiotics is warranted. Also, it is very important that you finish the entire regimen of whatever your primary doctor prescribes you; you must also take them as scheduled. If you develop a fever or vomiting that doesn't subside, go to the emergency room right away!

I wish you the best and I hope that things get better for you. If you have any further questions or need any recommendations, feel free to message me.

Z