Is this true?

Hi, it's me again but I have been posting a lot lately in my quest of figuring out what's wrong with my GIT. The GP has told me a piece of information and I don't know whether it is right or wrong. Last year, I started suffering from rectal pain associated with D as usual and tenesmus. I saw two surgeons at the time: one said the cause is my anal fissures as usual and the other did a proctoscope and told me it's proctitis. My GI favored the second diagnosis and prescribed me steroid enemas and then after a month he prescribed me pentasa enema. The enemas made my symptoms subside. I asked him at that time whether this was something new or related to my intestines and he replied that it was related to my intestines. However, my intestines kept hurting me, so I asked him to perform a scope but he refused.

As a result, I sought two second opinions. The first told me that I had UC and asked me to continue my meds. The second doc performed an enteroscope of the intestines and a sigmoidoscopy of the colon. After the scope, he told me that he found red spots in the rectum but he does not consider these to be proctitis. However, the biopsy results showed that these are chronic proctitis.

I kept suffering from rectal pain and swelling until my original doc performed a colonoscopy early this month. The biopsy results did not mention any proctitis whatsoever and he referred my rectal pain to hemorrhoids. Of course, the pain is not getting any better and I decided to leave it untreated as I can't insert anything inside the rectum.

Lately, I was discussing the results with the GP and she told me that I do not have proctitis. She even explained that chronic proctitis is caused by constant use of enemas and when one is off enemas for more than a month, this inflammation disappears. Is this true? Whenever I browse the net in search for proctitis, it yields the same results. Proctitis is inflammation of the lining of the rectum. There are four causes of proctitis: sexual infections, radiation, chemotherapy and IBD, whether UC or CD. The first three do not apply to me at the time being as I'm not sexually active and am not under any of the two therapies mentioned. So, I either have it because of UC or CD.

In addition, she old me that once I get off Entocort, all the tenesmus and rectal pain will disappear. I have had this rectal pain many months before I started Entocort. There are some sites that mention that Entocort worsens Crohn's. I can't believe it as how is it a med particularly for Crohn's and worsens it!!

I'm just wondering what's the correct answer. I just need to understand. I won't be upset if you tell me that enemas cause it.
Thank you for reading.
Your replies are highly appreciated.

It's no wonder you're confused...I hate when "Professionals" are clueless and their explanations end up confusing patients rather than helping them understand their disease better.

First and foremost, you have CD, CD can affect any part of the GI tract from mouth to anus (UC is limited to the colon/rectum).

When proctitis arises in eithr CD or UC then rectal meds are necessary and no, they do not cause proctitis by using them, nor is it true that that constant use of enemas/rectal meds can cause proctitis (unless she's referring to fleet enemas being used constantly, then yes, that possibly could cause proctitis issues for IBD patients).

You can most definitely have proctitis as well as hemmies and even fissures all at the same time....proctitis, hemmies and fissures can come and go as well.

Rectal meds aid with tenesmus, tenesmus is typicaly the result of having proctitis, therefore using rectal meds aids with both tenesmus and proctitis.

Just because you clear your proctitis and tenesmus up doesn't mean it will clear up the CD affecting other parts of your intestines, the rectal meds only reach througout the rectum for the most part, so if your CD is also affecting your colon (which is often the case if it's affecting your rectum, but not necessarily always) then you need oral meds that target (release) into your colon as well.


I hope this helps.

    Yeah, welcome to the joy that is the treatment of CD. The standards are confusion, pain, and docs not taking time to explain stuff. Oh, and meds with adverse side effects.

    I was initially dxed with UC/Proctitis but the "upgraded" to crohn's. I've been in the fissure boat before. Other than kidneystones, I regared them as the worst aspect of a miserable disease..

    I hope you keep feeling better, but don't expect your docs to ACTUALLY know more than you about your illness. You will have to be aggressive in getting facts & treatments. Become an advocate for your own care.

        Sincerely,

              Matthew

Matthew and Keepingfaith, thank you very much.
@ Matthew. You are def right I should fight my own battle. I already do this with my GI and he becomes upset. I learnt lately to sugar-coat any critique I want to tell him but in vain. I can't get the name of my diagnosis. At the beginning, it was just inflammation, after that indeterminate colitis and now +/- Crohn's. I was never told what side effects to expect and when I got hypertension because of pred, I was told "expected". Really, I feel I'm under the mercy of docs.
@ Keepingfaith. Well,actually, my CTs always miss any inflammation, I don't know why. Besides, I hate the procedure itself and the prep, Ugh!
I wish I could take steroids suppositories all the time, too. They are a blessing.
Take care!

I too suffered from tenesmus and reacted to sulfa component drugs even though the doctors have opted a few times for me to try them again..Your CD seems to have followed the same road mine did with the Gastritis & Duo component with the tenesmus/intestinal portion--flagyl/ cipro antibiotic combos & donnotol was given to me to treat this component..I was not treated with Endocort because my doctor did not believe this would work and went straight to predisone..
Cindy

Cindywcrohnes and InSoFla, thank you very much.
@ Cindy. I started to suspect whether my stomach and duodenum are Crohn's too or not? The biopsy never mentioned Crohn's. I can't believe it's a coincidence that I have inflammation in mouth, esophagus, stomach, duodenum, intestines and colon? May be. Who knows?
@ InSoFla. I tried probiotics before and then were really harmful. The other two options, I don't have enough info about them. I have first to browse the net and then ask my doc.
Take care!

When my CD was really active, I had a real problem every EGD showed inflammation with a bleeding lining in my lower stomach into the duo..It was not cancer or h-pylori..Gastro-Duo inflammation can be part of CD..Inflammation can be from the sinus to the anus..I think the gastro-duo stuff is only relative to 20% of CD patients...I was given all kinds of meds but I battled inflammation till I was put on predisone to shut the stuff off..I have never had fistulas and other manifistations some other CD suffers can have...I had joint pain, headaches,mouth sores, gall & kidney stones w/ repeated UTIs..It shows extra-manifistations of CD in my med records from that horrid flare period..

Cindy