Is it Crohn`s or Colitis or Typhlitis

[ShwetaG]

Hi , I am 25 years old. Since 5 years I had acute pain starting from back and radiating towards stomach and lower abdomen ( Almost always on the left side ) History of multiple renal calculi both kidneys ( just 5-7 mm ) . Even post non existing renal calculi I experienced similar pains. underwent xrays, MRI back : clean, 320 slice whole abdomen CT Scan , diagnosis : Crohn`s disease and possible Ectopic pregnancy ( I was a virgin :-/ ) :yrolleyes: anyways the docs didnt put much emphasis on Crohn`s disease because I didnt have any clinical symptoms yeah I might have constipation from time to tiem but that would go away on its own!! took 6 months medication for pancreatisis .. Ectopic pregnancy was ruled out ofcourse..

2 years later my pain changed from back to vaginal and anal cramps for continuously 3-4 days.. When I went for tests again.. MRI suggested uterine fibroid , Deep infiltrating recto vaginal endometriosis but apart from that also some inflamation , tissue thickeneing in my ileum

:confused2:
Doctor suggested colonoscpy.. I didnt get it done because its quite a painful procedure to go through without any symptoms or pains.

Anyways I started taking meds for my fibroids, and used to get time to time Ultrasoudn to check the size and num of fibroids growing..
recently I got colonoscopy done just for satisfaction and ruling out any other possible Crohn`s disease I was diagnosed many years ago..

Although my biopsy showed negative Crohn`s but wht it gave in diagnosis left me cold and scared!!
They took 2 biopsy sample one ileocaecal biopsy :- diagnosis Chronic Active Typhlitis :yfaint:

2nd was rectosigmoid Biopsy : diagnosis Mild Chronic non specific colitis.. :yrolleyes:


I read extensively about Typhlitis which is majorly presented in cancer patients or auto immune disease patients. and has 40-50% mortality rate , no cure ...
I dont have any major diarrheara or fevers etc but such diagnosis have left me confused.. There is definitely something going wrong inside my body although its not affecting me in day to day life!!
What are the symptoms I should eb looking at. May be I dont have a regular bowel movement which I am not aware of.. may be what is normal to me isnt clinically normal!!
How to deal with this diagnosis ??
Please advice

 

[Trysha]

Have you questioned the typhlitis diagnosis with your docs? If not then it might be a good idea.
You do not mention having any cancer or cancer treatments, and this diagnosis is usually connected with the condition.
Labs are not infallible and there is room to go back and check this finding.
Perhaps you need a fresh start with a new GI----you could always get a second opinion.
Feel better soon
Hugs and best wishes
Trysha

 

[lacey2]

Hi, I finally found someone I can connect with! TYPHLITIS! An unusual word with a powerful punch~!

Yes, I believe now that such a condition exists. After approx. 50 years of pain on my lower right side, always very loose stools, bleeding from the rectum, and the pain. Gradually the pain increased. Sitting in a recliner with my knees to my chest hoping I could ease the pain.

I believe I was the main contributor to the colofac company as all the specialists would say I had an irritable bowel. Even had surgery with a suture around the anus to help control the diarrhoea! Surgery followed to repair a twist cecum, and a benign tumour on the ileum. So, fast forward, after the recliner chair situation, I decided I would and required additional help with the pain. I asked my immunologist if he could recommend a gastro who could possibly guide me thru my colofac digestion.

After meeting him, and many tests, ct's, galleon x-rays, and now the medication. MEDICATIONS! Not a lot of communication coming from this doctor, just a lot of scrips. So I copied and did a paste of all the Mayo Clinics medication for Crohn's. He responded that if I checked my medication schedule, I had gone thru those with no response. Okay, red faced, I began to ask more questions. I was now asking for a laparoscope to see if adhesions were wrapped around the bowel. Several doctors refused to do this. Now what?

So, one day as I was leaving his rooms he stated "you have typhlitis". At this point no explanation of what it was, how it worked, how it was to be treated ect. I persisted with this doctor. Now the pain continued to get worse. I was admitted to the hospital with antibiotic drip, and other medication. A nurse came into my room when I was asking for something for pain relief. She offered two panadol to start and to see how it would affect the pain. Dr arrives shortly and asked how I was doing and what they were giving me for pain. I repeated the panadol story. He calmly walked out of my room, retuning shortly. Thereafter, I could have anything for pain! I wonder why? Poor nurse.

Finally in March of this year I was put on a drug which is a chemo therapy Methoblastin, methotrexate drug 15mg's once a week. After a bit, I began to notice the pain was not as intense, and gradually no pain at all. The diarrhoea also stopped. I do have all the pain medication on hand, and do take it as soon as I get a symptom of pain, and continue to take it until the pain stops. And it does stop.

Now I might get a pain breakthrough for a couple of days perhaps once every 3 weeks. I believe this is a lot better then continuous pain.

Blood tests constantly with high white blood cell count. Then dropping down to near normal. That is why all the other gastro doctors were saying irritable bowel syndrome.

Now, here is the greatest test of all. The calprotenia test, which tests for infection in the bowel. Normal should read 50. Mine was 3000.! Ah ha! Confirmation to the specialist it was Typhlitis. Once I commenced the chemo drug, it has started to come down. But it was bouncing like a rubber ball. Approx once a month I have it tested, like down to 600, then 300, then 900 on the last one 2 weeks ago. So, that was my signal that I was due to a large pain episode. Sure enough, I'm on the pain medication, and will ride it out until the inflammation settles down.

My suggestion, take the Typhlitis seriously, it is there, unrecognized and undealt with. I hope the doctors are asking for your faeces to be tested, and I hope you ask for a copy of the reports and watch for the calprotenia levels. Your doctor can guide you thru the readings of the reports.

I'm sorry for taking up so much space on the forum but, I would like to stand on the roof top and shout out that Typhlitis is real, and doctors, please be aware it exists, and is very painful.

Chemo drug Nethoblastin, methotrexate 15mg once a week
antibiotic Norfloxacin, for 4 weeks only
flagyl was stopped

Gastro-stop in the event of diarrhoea. It is not an opiate, and can be purchased over the counter. The specialist put me onto this medication, he stated, there should be bananas in the bowel, not loose like we were accustomed to.
Best wishes