I need help with undiagnosed Proctitis  

Nearly three out of four ulcerative colitis (UC) sufferers (73 percent) responding to a new nationwide survey say not feeling well has become a normal part of life. Furthermore, they describe UC as disruptive when it comes to their relationship with a spouse (64 percent), their sexual relations (75 percent) and their emotional state (82 percent).
How do you cope with colitis ? Are you struggling with the emotional effects ? Even if a problem shared isn't a problem halved it may help to discuss it with people in the same situation.
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I need help with undiagnosed Proctitis  

Post by PSuferer »

I am suffering from two different helth conditions, listed below, that cause me to have several socialy unaccetable symtoms, listed further below, I need a solution:

The first medical condition is proctitis which is having the lower rectum chronically inflamed which results in having all of the symptoms around the rectum. I have noticed that ingesting food containing sulphur, sulphur compounds or food that become sulphur in the body makes the rectum more inflamed, creates excessive foul smelling gas & burping and causes flatulence incontinence.

Two of the most effective ways of decreasing proctitis symptoms like inflammation and gas is by decreasing ingestion of anything containing or producing sulphur and by doing as little physically as possible.
NOTE: Although you will feel the symptoms decreasing it will not be enough to function under longer periods of time.

The second Medical condition is unbalanced gut flora with symptoms usually being centred around the stomach area which in my case means having chronic inflamed belly, stomach pain, excessive gas, excessive burping, stomach growling and being food sensitive towards all foods which means having diarrhea often.

The best of the two most effective ways of combating the symptoms of an unbalanced gut flora is through fecal transplant which can fully cure you and the second being through ingesting several doses of probiotic supplement throughout the day because a dose contains 20billion live culture and that only gives me about 3 symptom free hours.
NOTE: Probiotic supplements really do make you symptom free for a couple of hours and while there is a small improvement in proctitis symptoms, it doesn't really help much.

All the symtoms I am experiencing
1.Excessive gas
2.Excessive burping
3.Extremely intolerant to sulphur or any sulphur compound
4.Extreme food intolerances when all tests have come out negative for food allergies
5.Stomach growling
6.Pain in abdomen
7.Balloon belly
8.75% diarrhea and 25% normal poop
9.Sometimes pain in rectum when pooping, this happens once or twice a month
10.Sometimes little blood in toilet paper, this happens once or twice a month
11.Constant feeling of inflammation/irritation in the lower rectum
12.Constant feeling of rectum pushing as if it was trying to poop
13.Wanting to poop but unable to, feeling as if rectum can't for some reason
14.Mucus and liquid coming out of rectum, not when pooping, but when physically active
15.Flatulence incontinence (not fecal incontinence)
16.Constant sinus inflammation, extremely low sense of smell
17.Short breaths, fog minded, low energy
18.Feeling tired, weak, irritated, sleepy, dizzy, Cold

How the specialist dr behaved followed by the examine and tests he perfomed:

At the first appointment I began to tell the specialist dr all of my symptoms in detail, listed above, and how much suffering it had inflicted in my life and that I isolate myself from people because of it.
Hes response was that he virtually knew the diagnosis just from hearing my symptoms and that the treatment for it had a high success rate of suppressing symptoms to a non existing point.
Following that statement the specialist dr performed a physical examen, listed below, that focused on three things after which he said tested normal.
Lastly he told me that I needed to take some labtests, listed below, and gave me a paper slip to give the nurse at the labtests which I went and performed.

At the second appointment the specialist dr was angry over something because he was already standing in the hallway, outside his office, waiting for me with the labtest result in his hand and when I got there he quickly began telling me that I had tested negative on all tests. He followed that up by saying there was nothing wrong with me and that stress was causing all my symptoms and that was basically it because when I started asking questions he responded by saying he had an important meeting and left.

Physical examen, listed below, which he said were normal after the examen
1.Prostate cancer
2.Sphincter muscle for damage och muscle pinch strength
3.x-ray or ultrasound

Labtests, listed below, for IBD, UC, Crohn's, Clostridium difficile, food allergy, yeast infections all of which came out negative
1.IgA - anti tTG negative
2.S-IgA shown in serum
3.Food allergy negative
4.Clostridium difficile negative
5.salmonella, shigella, campylobacter and yersinia negative
6.ASCA IgA och IgG negative

My own thoughts and questions

I spent years trying to find out which disease I had that was eating my life away by searching the internet for other diseases that shared as many symptoms as possible. It was hard and I ended up believing I had a couple of diseases.That was until this year when I finally stumbled upon proctitis which I immediately saw had 100% of the symptoms.
I understood that the specialist dr had come to the same conclusion after having read about the symptoms and about which tests are used for the diagnosis. What I don't understand is why the specialist dr changed his mind after seeing the labtest results.

1.Do you think my symptoms are those of proctitis?
2.If not what do you think I have?

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Re: I need help with undiagnosed Proctitis  

Post by rogalin47 »

Sorry to hear you're not well. I thought uc or any type of inflammatory bowel disease was only confirmed via a colonoscopy and biopsies. It doesn't sound as though you have had this done. I would request a further appointment with the gastro team to discuss this further. If You're not happy with the consultant you saw last time you can request to see a different one. You're not well, your quality of life is suffering and you obviously need help and treatment sooner rather than later. Either ring the hospital or talk to your gp asap

21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

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I need help with undiagnosed Proctitis  

Post by EmileBuH »

Yes there is help out there. I consider myself very lucky. I have a great psychiatrist a great councler and my mother is awesome. Still playing with meds though.


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