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Salofalk does not help with the cramping and the burning sensation please help

Posted , 4 users are following.

1990sophia
1990sophia

Hi everyone , 

I’m writing to everyone here ...

 Very briefly..;

I have been diagnosed with mild proctitis in March then with chronic colitis in May 2018.

My life since February 2018 is HELL.

I have been experiencing stabbing sharp pain on my left side ( lower abdomen ) . As a female just like everyone out there would think that is something related to my uterus... I have seen many gynaecologist and nothing ... finally I decided to have a laparoscopic surgery just to ‘ rule out’ the possibility of having Endimetriosis.. 

Now I’m still in so much pain and the gynaecologist confirmed that there is nothing abnormal in my uterus so I’m  back to the gastroenterologist...

Since April I have this. Running sensation in my vagina ( I’m assuming is because of the inflammation) 

My faceal cp was 560 in April and I had a sigmoidoscopy then a colonoscopy privately ...

Now I can not spend anymore money on private health care and the medicine I have been given ( salofalk , asacol stopped the bleeding but I’m in pain still! I have been taking painkillers since January 2018 and I never had a ingle day without NSDAs etc .

I really don’t like these drugs and I am also aware of the side effects. 

I am going to see a specialist soon but I just want to be pain free.

Is there anyone who is experiencing this stabbing pain on the left side and the burning sensation?! What could you do ?

I feel hopeless , I have been mistreated and misdiagnosed many times .

I just want te pain to go away ... 

Thank you for all your support !

0 likes, 10 replies

10 Replies

  • armelle67759
    armelle67759 1990sophia

    Posted

    Hi Sophia,

    i too suffers from proctitis and UC after years of constipation which I was told was IBS. 

    I don’t suffer diarrhoea nor pain, just exhaustion and occasional rectal bleeding. I take Pentasa and salofalk enemas at night. 

    Di you mean you take SNAIDS? I was told by my gastro that it was unsuitable for UC. Do you not have an IBD nurse you can phone? You can’t stay like this. 

    Sorry I cant be any more help.

    there is a Crohn and colitis website with a number. They were very helpful. 

    • 1990sophia
      1990sophia armelle67759

      Posted

      Dear Armelle, 

      Thank you very much for your email.

      Well 

      I have been diagnosed in the U.K. in March .. they said is just a mild proctitis .. ‘ nothing to worry ‘ about then In. My country they said that I have a chronic colitis ( biopsy results)

      I am using salofalk foam ... 

      I’m really worried will go to London this week to see a. Private doctor ... I’m bleeding again if I’m not using the medicine for more than two days .. also the pain is not as bad as it was but the burning sensation is terrible ! 

      Yes only NSDAs helps and I know I shouldn’t take them ! 

      I’m really sad ! 

      What do you think about pentasa

      ;( 

    • armelle67759
      armelle67759 1990sophia

      Posted

      Dear Sophia,

      i take 4 tablets a day 4000mg), i suppository and 2 squirts of salofalk foam enema. So it is a high dose I believe. It is not perfect as I bleed occasionally but I am always tired.

      i see an herbalist too. The tincture she gives me seem to help.

      i have tried all sorts of diets to no avail.

      good luck.

    • 1990sophia
      1990sophia armelle67759

      Posted

      Dear Armelle you take 4000mg of what ??- Jesus?!! 

      Well I prefer the enema ... but you shouldn’t use more than one a day ? 

      Thank you 

    • armelle67759
      armelle67759 1990sophia

      Posted

      It’s mesalazine, just a different name for it and yes I am on the correct dose.
  • michelle34409
    michelle34409 1990sophia

    Posted

    hi I too have proctitis . I originally started with symptoms of blood and mucus with bm . I was originally given asacol suppositories which did nothing . I was then put on Pentasa enemas which cleared everything for a month then I had the mother of all flares with constant watery bloody stools and severe pain which led me to taking an 8 week course of steroids which cleared everything up within 2 days . I'm now on maintenance meds . i take salofalk granules in the morning and salofalk suppositories at night which seems to be keeping everything at bay . maybe see if you can take oral meds

    • 1990sophia
      1990sophia michelle34409

      Posted

      Dear Michelle, 

      May I ask you if you had a chronic abdo pain then a burning sensation around your vagina area?’ 

      Also did you have steroid enemas or steroids orally ?

      Sorry to ask you these questions ..

      Best wishes 

      Thank you 

    • michelle34409
      michelle34409 1990sophia

      Posted

      I do occasionally get a burning sensation but more in the pelvic area rather than my vagina .

      I used steroid enemas but they made things worse so reluctantly went on oral steroids .

    • 1990sophia
      1990sophia michelle34409

      Posted

      Dear Michelle , 

      Thank you for getting back to me.

      Oh yes- I mean I have joint pain as well I had extremely painful periods - on Monday I had to call the ambulance again .. 

      So on Thursday I had the surgery and now is 100 percent sure is my colitis .. or proctitis or however you call it ... is the inflammation that causes it .

      I’m very sorry to hear your story but I guess for us is even harder as we ‘ have pelvic’ so we have to rule out the possibility of having endo as I have been told many times that my proctitis should not cause this pain !! ....

      So been mistreated ... 

      so I had the pain first then the burning sensation .... so the mot elain you have the more burning sensation you will have because of the inflammation..... I’m not medically trained but I have been misdiagnosed many times and I have done a lot of research and most importantly I fight ! - as I wanna get healthy!- 

      Although I don’t have diarrhoea but I had a very stressful job ( teaching ) so I had that ‘ flare up ‘ thing I was in so much pain in April May June  Jesus ...

  • pamela21537
    pamela21537 1990sophia

    Posted

    I feel so sorry for your pain level. You may want to explore CBD oil. There are some studies that it is helping with multiple issues, including ulcerative colitis. Some use it for bladder and vaginal issues. You can take it under the tongue, rectally, or vaginally. Talk to your doctor and see if they think it is a viable option. Hope you are feeling better soon...

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