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Ulcerative Colitis
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Posted 2/18/2015 11:51 AM (GMT 0)
So last June after colonoscopy I was diagnosed with mild Proctitis, the only symptom I had was bleeding with each bowel movement. I was perscribed Pentasa suppositores
Then I started having left side pain and some joint pain. There were times I was also having right side pain. The pains were dull burning type pain. I also get cramping in the middle, which is more like tiny needles sticking in you kind of pain. I also have tenesmus and constipation on and off and as soon as I stop taking pentasa within a day or two the muscus and bleeding starts.

At the end of Jan. I had another colonoscopy. This showed severe Proctitis and severe spasms throughout the whole colon.

This morning I eventually got to see the doctor for the first time, that did both my colonscopies and that deals with this stuff here. He is a general surgeon and colorectal surgeon. We don't have a GI in our hospital.

He told me that the Proctitis is no big deal and what I have is IBS, he said that is the cause of the pain! He said its stress related.
He said my pain only got worse because I was stressing about it.
He said it was diet related and named veg I should eat.

Now I have VERY little stress in my life, years ago I did have stress so I know the difference! As for diet related, I eat very few veg, no greens anyway! My diet is mainly bread, meat, potatoes, carrots etc. I do like salads, but rarely eat them. My husband told him that I though red wine wasn't helping, the doctor said no, it wouldn't do anything.
He said I don't get enough sleep and this causes it too.
He recommended i relax more, have a massage and if im still have pain that I could be referred to a psychologist!

I'm just so upset, is this all in my head?? I'm also cross with myself for not quizzing him more and just smiling as if I agree.

Could he be right?
I wondered was it the Proctits causing the problems and the side pain plus IBS on top of it causing the needle like pain. I'm just so confused. I didn't even mention the pain that comes and goes in my hands, elbows and knees incase that's in my head too. 😢

Post Edited (Gency) : 2/18/2015 4:54:43 AM (GMT-7)

Posted 2/18/2015 12:35 PM (GMT 0)
Personally I think you have gotten really bad care. What country are you in? Do you have any options for seeing real GI's? UC effects the whole colon, even if it is only currently visible in the proctitus area. You need to treat the whole colon by continued use of both rectal meds and oral meds, which should never be completely discontinued, ever. Personally, I think the IBS they diagnosed you with is a load of crap. They saw themselves that you had spasms throughout the entire colon. The oral meds you should be taking are mesalamines and antispasmodics, along with the rectal meds to treat your observable proctitus. I hate to say it but you're screwed if you have to depend on these backwoods docs that seem to know nothing about GI stuff and don't even have a GI on staff.
Posted 2/18/2015 1:20 PM (GMT 0)
it does sound like there is IBS. spasms are very IBS. while stress/mind related, it has very real physical symptoms (including pain) that can be treated. but also, procitis is not to be dismissed.

if chronic and severe it is a form of UC. oral 5-asa makes sense since you respond well to canasa.

it would be important to know the exact findings of biopsies taken during scoping. if the crypt cells in the mucosa are elongated and distorted it is UP or UC.

if your gut microbes have gotten out of wack, you could be experiencing some food sensitivities. try to find out if you are sensitive to dairy or gluten (at least for now).

keep reading and learning. try to get a real GI consultation. but if you can get oral 5-asa, may not be much more to do unless things get worse.
Posted 2/18/2015 1:41 PM (GMT 0)
Get a second opinion, it's ok to do that. Good luck.
Posted 2/18/2015 2:34 PM (GMT 0)
Thank you all for your replies, honestly this is the first time throughout all this ive felt so alone and confused.
I live in Ireland in Cavan, a backward county, im orginally from Dublin the Capital were the GI's are.
My own GP as said she'd refer me to a GI in Dublin but now I don't know what to do.
This Doctor is Indian and he did a biopiosy during the colonoscopy which must have shown clear. He said he needed to give me 3 times to normal medication to do the scope that's how he knows it is IBS.
He said that the IBS probably caused the Proctitis. But ignored the fact that my symptoms started out with just bleeding, then the muscus and then pain followed.

He perscribed me more Pentasa, Movical (for constipation, which I only sometime get, so why take that now when I'm not constipated?)
Colpermin (for IBS) which are both over the counter meds, I didn't need him to prescribe me them! And Prothiaden 25mg, he said higher 75mg is usually perscribed to people with depression but the 25mg will help relax my colon from spasms, he gave me a 6 week course. He also told me to go on a glutton free diet.

So I guess I'll follow these instruction for the six weeks and see how I go. And if I don't feel better demand to be referred to a proper GI... what do yous think?

What gets me though is how he can just brush aside severe Proctits as nothing and put more emphasis on IBS. Has anyone here got both, or heard of anyone being told they had both?
Posted 2/18/2015 2:42 PM (GMT 0)
Lots of people have both but I personally believe they are all just different parts of the same overall root cause. I don't know how much of a pain it is for you to see a real GI now but I wouldn't wait six weeks if it were me. Doctors often have their own opinions on things but that doesn't mean they're right. It just means they have their own opinions. Sometimes those opinions are either wrong or fly in the face of facts.
Posted 2/18/2015 2:43 PM (GMT 0)
hey dublin girl - welcome turn

ya, it really sounds like you need to go see the GI - your current doc ........ well .......i dunno !

hang in there !
Posted 2/18/2015 2:45 PM (GMT 0)
I'm not a doctor (obviously) but I am someone who has dealt with a lot of stress, and I can tell you that you would not believe the impact it can have on you physically - even if you don't feel particularly emotionally overwhelmed, it can go on behind the scenes. I'm not at all saying that this is definitely the case, because like I said I'm not a professional and there is still a big chance that your situation is unrelated. But the thing is there isn't really any harm in making some lifestyle changes anyway, even if it doesn't help at least you tried and you can rule it out? There are loads of things you can try to combat stress like gentle exercise, counselling, trying to cut out things that cause you consternation? It might be worth googling some proactive things you can do to reduce any background distress you might be feeling.

It may be worth looking in to anyway, but above all, try not to get really caught up in it. If its stress its stress and that's fine, and if not you will get another kind of treatment that will help. It's okay if it is stress, we all get like that sometimes and we can suffer physically because of it. Your doctor isn't accusing you of anything bad and you shouldn't feel like you are nuts or like you caused your own situation. These kinds of symptoms can be scary and confusing I know, but the main thing is to try to accept that you will get some kind of resolution eventually. There will be an end point and you will feel better, but in the meantime focus on whether or not you can make any positive changes to try to help - it definitely wont hurt :)
Posted 2/18/2015 3:28 PM (GMT 0)
Great post from Greyblazer, lots of good advice.
Posted 2/18/2015 3:40 PM (GMT 0)
Hi Gency your story sounds similar to mine. I have also been o here frequently complaining of left sided mild cramping pain. I have been told that I am currently in remission with my colitis after them performing two lots of blood tests and stool samples and neither show any inflammation but the pain persists. I, like you, have been brushed off by my GI doc who insists that the pain is IBS, stress related and related to my anxiety. he has also made the comment that "it is all in my head". That really annoyed me as I think I know that I have a very real pain everyday. Can I ask, does your pain happen more after a BM? Mine starts about 20 minutes after a BM and then persists a good few hours afterwards slowly subsiding in the late afternoon. My GI insists that the pain is nothing to do with my colitis as he has put a lot of faith in the stool tests which show no active inflammation at present. I disagree and think it is to do with my colitis as the pain is on the left side only where my colitis is located.

I have today been to see my GP and have demanded that they or my GI get to the bottom of this or I shall be complaining to the GMC (General Medical Council) about their lack of care. So he said that he will be writing to my GI to get some answers and assured me that I would not be left to suffer with no answers. He also said that he did not think it was IBS related but more IBD related. It may be that I am having colon spasms like you that may show up on a colonoscopy. My GI is refusing to carry out a colonoscopy at present because he says that the test results do not warrant it. I had my last colonoscopy in June, but that was when I was flaring.

There are some days when the pain is worse than others and I do find that if I keep busy, it is not as noticeable.

I am going to start running again when the weather picks up and so if it is spasming, which I suspect it is, then it may ease the discomfort.

Can I ask what vegetables/foods did your GI recommend you eat/not eat?
Posted 2/18/2015 3:42 PM (GMT 0)
He said he needed to give me 3 times to normal medication to do the scope that's how he knows it is IBS.

Are you a red-head? Asking because it is a scientific fact that "gingers" need more pain meds than any other group, and has nothing to do with having IBS (except that you may need higher dose of pain meds to calm your gut spasms). If this doctor does not know this, working in a country filled with red-heads, he is showing his ignorance.

You need a better doctor, mostly because he is not acting in a way that allows you to get information from him and become a full partner in your condition.

Do you have IBS? Probably, it is a diagnosis they give if they cannot see inflammation. If you have proctitis then you definitely have IBD (different than IBS, different meds. IBD, which is UC or proctitis or Crohn's, shows up in your colonoscopy as well as biopsies). IBS is not visible but since you report cramping and pain then IBS is likely.

I have Irish genes in me (strawberry blonde) and Ireland is the world-wide center of IBD so there should be some good doctors who have seen this often, a mix of IBS and IBD (I have both but couldn't tell the difference until 12 years later).

Some doctors suck at their job. They may be good at one part but suck with talking to patients or explaining things clearly.

Good luck.

edit to add:
Doctor said :He said that the IBS probably caused the Proctitis.
Not true. I've never read anywhere that IBS (Irritable Bowel Syndrome) causes proctitis or any other kind of IBD (Inflammatory Bowel Disease). Really…get a better doctor.

Post Edited (imagardener2) : 2/18/2015 8:45:10 AM (GMT-7)

Posted 2/18/2015 4:57 PM (GMT 0)
Lol juststud at Dublin Girl, I do miss home, especially when it comes to the backward country ways.

Garylouisville, I do think I need a second opinion, even if another doctor agrees with him, I'm sure they'll be more helpful and less close minded as this guy seems to be.

GreyBlazer, I'm 99% sure I'm not stressed lol, if I was I'd at least know that was the reason.
I've had many stresses in the past, especially with Ireland gone through a recession and even back then I never had health problems. I've a good marriage, ups and downs like most marriages but my husband has been very supportive (except for today, when he now believes all of this is now diet related) Ive 3 good kids and I only work 2 evenings a week for 2 hours a night, teaching English to foreign Nationals which I enjoy doing. Ive no money worries as such or big dramas happening in my life, so any stress I would have is very minimal. Now though I am stressing wondering if I do stress lol

Happychick sorry to hear you are going to this too.
My pains can happen willy nilly, I was watching the Notebook the other night all snuggled up with the family, then out of the blue, bam right side pain.
My left side pain seems to be there nearly all the time niggling at me although sometimes if I strain too hard having a BM I will get left side pain and it will linger for a while after and subside. My pain isn't very bad, I can live with it but I still want to know exactly what is causing it.
Happychick I don't understand if you've already been diagnose with left side colitis why your GI is insisting that the left side pain is unrelated! Don't mind me asking, what country do you live in?

Imagardener2, no im not a red head, I've sallow skin and dark hair, not your typical irish looking gal.
Yes I do have Proctits, that last scope 3 weeks ago showed severe Proctits, but apparently according to the doctor any pain, even rectal pain is to do with the IBS so the Proctitis is no big deal! He prescribed me another 6 week course but I know as soon as it's over I'll start bleeding with pus like mucus again... but eh no big deal.

Yes I think as a surgeon, he way of actually explaining and putting his patients mind at rest leads a lot to be desired.
Posted 2/18/2015 5:04 PM (GMT 0)
IBS can cause procitits which is not the same as IBD. People should keep in mind that proctitis and colitis is just acute inflammation. It does not become UP or UC until the inflammation is chronic, the crypt cells are deformed, and infectious causes have been eliminated.

People with IBD can often get IBS secondary. People with IBS caanhave some acute inflammation when IBS is acting up.

In this case there could have been IBS not causing pain, then some inflammation develop, then the IBD could have gotten worse, causing pain. So the order of symptoms is not the final word.

People also just have to move on from "all in the head" - taken one way it mean the pain is imagined. This is silly when there is also visible spasms and other symptoms. Taken the proper way, it is understood the IBS has a more direct connection to stress and draws more heavily on the mind-gut connection. For IBD, stress is more of an indirect factor, and the mind-gut connection is less relevant.
Posted 2/18/2015 5:09 PM (GMT 0)
I'm living proof (along with some others as well) that you can in fact have both IBD and IBS, but I agree that you need better care than what you're receiving from this doctor that isn't even a specialist, heck even some of the actual GI's are clueless really. Since you don't have an actual GI at the hospital you go to I really think you should follow your GP's advice and let them refer you to an actual GI, then go from there. Because this doc you're seeing right now/so far, I wouldn't waste time on his opinion, he's far from qualified to treat IBDers and IBDers need a good GI. Best of luck to you!
Posted 2/18/2015 5:41 PM (GMT 0)
Thank you pb4

DBwithUC since, ive no clue as the the crypt cells, If the crypt cells aren't deformed does that mean that proctitis isn't related to IBD?
I wonder if I can get those results.

What would cause an infection, I never had one? Ive also read that Procitis can be caused by anal sex and I can rule that out! Lol

What is classed as chronic?
As I said I had no symptoms at all, and then Mar 2014 I started bleeding, then bleeding and mucus till I finally gave in in June and went to the doctor, she sent me to this guy Mr Rajpal for a colonscope, mild Proctitis was the diagnoses, no mention of spasms or IBS, he never took biopsies or bloods and I never got to speak to him. He prescribed me a 6 week course of Pentasa and refered me back to my own GP.
I have to keep going back to my GP for more Pentasa as everytime I try to stop I bleed with mucus. Then the pain started. My GP sent me for another Colonoscopy again to Mr Rajpal, that was the one of 3 weeks ago. Severe Proctitis and serveve spasms throughout the colon was his findings. Today he eventually saw me, although he didn't want to as im not a private patient but as a favour to an anesthetist friend of my husband he agreed to see me.
So that means ive had the Proctits now nearly a year, would that be classed as chronic?
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