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Ulcerative Colitis
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Posted 9/10/2015 2:43 PM (GMT 0)
Hey Everyone,

New here.. I apologize if I shouldn't have posted this here.

Let me start out by saying that my dad and brother both suffer from Ulcerative Colitis.

For as long as I can remember, I am always bloated (stomach hard as a rock as soon as I eat or drink anything) and I have troubles having a bowel movement. I will have the urge that I need to go, but I sit down and strain horribly. I have tried to cure this by changing up my diet, eliminating things that I thought was causing the bloating/constipation. I had no success and I eat healthy to begin with.

The last few months I have really been straining to eliminate and I haven't even been able to with the help of flax seed, miralax, laxatives, get regular tea, you name it, I've tried it. I noticed that when I would have a BM that it was coated with mucus (TMI sorry) and sometimes blood. Sometimes I would try to have a BM and nothing would come out besides mucus.

I consulted with my doctor and she told me I had chronic constipation but ordered me a colonoscopy due to my brother and dad having colon issues. I had a colonoscopy on Tuesday and the wrote on my paper Hemorrhoids and Proctitis. I was pretty out of it this day so I don't remember anything they said. I called and spoke to the doctor yesterday and they said they found ulcers and they sent in to biopsy.

What are the chances that I most likely have Ulcerative Colitis. Is constipation an early symptom of UC?
Posted 9/10/2015 2:48 PM (GMT 0)
Sorry to tell you but yes you have more than a chance of having UC turn
Posted 9/10/2015 4:32 PM (GMT 0)
It's not looking good right now. More than likely you have IBD, but it could be either UC or Crohns. Constipation is not usually a normal part of it but it can happen, particularly if you have IBS in addition to IBD. This is a very real possibility. You should throw logic out the window and don't assume anything because just eating "healthy" can sometimes make us worse instead of better. My system can handle burgers and fries much better than fruits, veggies, and fiber.
Posted 9/10/2015 4:41 PM (GMT 0)
If it's Proctitis then it's an infection, a short course of antibiotics, or an anti-inflammatory suppository like canasa will clear it up and you won't have to worry about it again.

If it's Ulcerative Proctitis (the least severe type of ulcerative colitis) then you have a chronic, lifelong illness that requires medications for life.

Wait and see what the biopsies say.

Bowel issues go to one extreme or the other: constipation or diarrhea.
Posted 9/10/2015 4:47 PM (GMT 0)
iPoop- if it is indeed Ulcerative Proctitis, does the severity ever increase?

Sorry for all the questions!
Posted 9/10/2015 4:49 PM (GMT 0)
Thank you for the responses! I guess I am new to all of this, obviously, so IBD is Inflammatory Bowel Disease. Can this just be a general diagnosis and that's what I could possibly have or does it usually breakdown into something else, such as UC or Crohns? I have to wait 7 to 10 business days for the results to come back, but I am a worry wart and would like to know answers! ugh.

The doctor recommended that I take Phillips Colon Health probiotic and eat a high fiber diet right now. I have also considered looking into going gluten free to see if that helps with the bloating.
Posted 9/10/2015 5:11 PM (GMT 0)
I have moderate UC, and my main symptom is constipation (almost never have diarrhea). From my understanding, constipation as a symptom of UC is more rare than diarrhea, but not unheard of.
Posted 9/10/2015 5:41 PM (GMT 0)
if you are upping your fiber make sure you increase the amount of fluids drastically as eating more fiber and not increasing water can actually make you more constipated. if you have procititis you should be given medications to treat it regarless of it its UC or another cause.
if its caused by an infection obviously anti-microbials will be needed
has your doctor discussed using rectal route mesalamine medications?

some tips to avoid bloating:
1. chew food thoroughly, if it is not chewed well than the bacteria in your gut finishes off digestion and they produce a gas which causes bloating
2. dont talk when you eat, it can intrduce more air into GI tract
3. avoid drinking with a straw- for the reason listed in number 2
4. avoid gum- it both introduces more air into your GI tract and some of the sweetners used in gum can cause bloating
5. avoid carbonated beverages - because its adding more air into your GI tract
good luck
Posted 9/10/2015 5:59 PM (GMT 0)

lpoehlei said...
iPoop- if it is indeed Ulcerative Proctitis, does the severity ever increase?

Sorry for all the questions!

If ulcerative colitis is initially limited to the rectum (ulcerative proctitis) at the time of diagnosis, fewer than 30% of individuals will go on to develop more extensive disease (Rowe).

Part of that rests on your head though, medication noncompliance is a big reason for disease progression. Basically people stopping their prescription maintenance medications when they feel good, and it spreads because of it.
Posted 9/10/2015 6:07 PM (GMT 0)
In my mind Ulcerative Colitis effects the whole colon, even if it is diagnosed as just Ulcerative Proctitus. It often starts out in the Proctitus area and "spreads" upward when it "spreads". I actually hate the word spreads because, as I said before, UC effects the whole colon to some degree but it may be microscopic in some areas with no visible signs because it tends to start in the weakest (Proctitus) area first before "spreading". UC proctitus is basically a term used to describe what area is visibly effected.

I have seen many post here who were diagnosed with UP and treated in that area only with rectals, only to discover later on that it has "spread" farther up. Don't jump the gun on diagnosis but if it is UC Proctitus I highly recommend not only treating it with the rectals in that area but to also use oral mesalamines, which treat farther up. UC is a disease where you have to treat proactively instead of reactively. If you treat it in the proctitus area only and then it "spreads" farther up the damage has already been done, making it much harder to treat. You want to keep the disease at bay farther up by treating it ahead of time instead of waiting for it to get worse and then treating because once damage has been done it can take a long time to heal and sometimes it never heals. What treatments do your father and brother do and what is their condition?
Posted 9/10/2015 7:26 PM (GMT 0)

garylouisville said...
In my mind Ulcerative Colitis effects the whole colon, even if it is diagnosed as just Ulcerative Proctitus. It often starts out in the Proctitus area and "spreads" upward when it "spreads". I actually hate the word spreads because, as I said before, UC effects the whole colon to some degree but it may be microscopic in some areas with no visible signs because it tends to start in the weakest (Proctitus) area first before "spreading". UC proctitus is basically a term used to describe what area is visibly effected.

I have seen many post here who were diagnosed with UP and treated in that area only with rectals, only to discover later on that it has "spread" farther up. Don't jump the gun on diagnosis but if it is UC Proctitus I highly recommend not only treating it with the rectals in that area but to also use oral mesalamines, which treat farther up. UC is a disease where you have to treat proactively instead of reactively. If you treat it in the proctitus area only and then it "spreads" farther up the damage has already been done, making it much harder to treat. You want to keep the disease at bay farther up by treating it ahead of time instead of waiting for it to get worse and then treating because once damage has been done it can take a long time to heal and sometimes it never heals. What treatments do your father and brother do and what is their condition?

That all makes sense!! My brother has to take a Humira shot once every two weeks and my dad is Humira and Mecaptupurine but has previously been on Asacol and enemas. My dad was hospitalized last year due to a really bad flare up and my brother was very sick about 2 years ago due to a flare up and then with his weakened immune system ended up getting pneumonia and was not able to fight it off so he was hospitalized as well.
Posted 9/10/2015 9:26 PM (GMT 0)
All of you should get pneumonia shots as well as shingles.
Posted 9/10/2015 9:59 PM (GMT 0)

garylouiseville said...
In my mind Ulcerative Colitis effects the whole colon, even if it is diagnosed as just Ulcerative Proctitus.

It doesn't work anything like what you are saying. UP is not pancolitis by another name. By that reasoning I could argue I have Crohn's of the entire small bowel: it just hasn't materialised yet.
Posted 9/10/2015 10:16 PM (GMT 0)

NiceCupOfTea said...

garylouiseville said...
In my mind Ulcerative Colitis effects the whole colon, even if it is diagnosed as just Ulcerative Proctitus.

It doesn't work anything like what you are saying. UP is not pancolitis by another name. By that reasoning I could argue I have Crohn's of the entire small bowel: it just hasn't materialised yet.




So could maybe someone else jump in here with some proof either way ? I think a lot of people here would like to know the truth, not just opinions.

Myself, I would tend to agree with the second poster.

Thanks.
Posted 9/10/2015 10:49 PM (GMT 0)
I'm just trying to save those who are diagnosed with UC Proctitus who do not use oral mesalamines and find out later that it has "spread" and now they have to try and heal an already damaged colon after the fact. Just as you want to take oral mesalamines to stay in remission from whatever type of UC you were diagnosed with, you want to be proactive and stop it from "spreading" in the first place by taking oral mesalamines for UC Proctitus to prevent it from "spreading" farther up. UC is not really an infectious disease, therefore the "infection" cannot "spread". Your immune system attacks the weakest parts of the colon and continues attacking the weakest parts of the colon unless you beat it back with meds, hopefully before it "spreads". There are posts galore on this site from patient after patient after patient where they treated UC Proctitus with rectal meds only, discovering later on that it had "spread". Crohns is actually a little different because it's nature is "patchy" and can be patchy through the whole digestive tract.
Posted 9/10/2015 11:00 PM (GMT 0)
If a colon doesn't show any visible or microscopic evidence of inflammation, then there is no colitis there and no GI will give a colitis diagnosis: it isn't rocket science. Whether somebody with proctitis takes oral mesalazine prophylactically in case they develop colitis in the future is another issue, but you're conflating it with having an ulcerative colitis diagnosis. Which is wrong. You cannot diagnose somebody based on what they *might* get in the future, you can only diagnose them with what they have now.

Also, I'd like to know what you mean by the "weakest" part of the colon. You know more than IBD researchers if you know that much.

Post Edited (NiceCupOfTea) : 9/10/2015 5:05:39 PM (GMT-6)

Posted 9/10/2015 11:05 PM (GMT 0)
Doctor called and diagnosed me with Ulcerative Proctitis. Prescribed me Canasa suppositories to take for 90 days and see him in 14 weeks. Feeling kind of lost, emotional, all of the above. Any suggestions? Is it normal for me to have to wait 14 weeks?
Posted 9/10/2015 11:08 PM (GMT 0)

lpoehlei said...
Doctor called and diagnosed me with Ulcerative Proctitis. Prescribed me Canasa suppositories to take for 90 days and see him in 14 weeks. Feeling kind of lost, emotional, all of the above. Any suggestions? Is it normal for me to have to wait 14 weeks?

That's 3-4 months. Yeah, fairly normal. But if your symptoms worsen before then, don't be afraid to phone up your doctor to let them know: they should get you in earlier if that's the case.
Posted 9/10/2015 11:14 PM (GMT 0)

garylouisville said...
I'm just trying to save those who are diagnosed with UC Proctitus who do not use oral mesalamines and find out later that it has "spread" and now they have to try and heal an already damaged colon after the fact. Just as you want to take oral mesalamines to stay in remission from whatever type of UC you were diagnosed with, you want to be proactive and stop it from "spreading" in the first place by taking oral mesalamines for UC Proctitus to prevent it from "spreading" farther up. UC is not really an infectious disease, therefore the "infection" cannot "spread". Your immune system attacks the weakest parts of the colon and continues attacking the weakest parts of the colon unless you beat it back with meds, hopefully before it "spreads". There are posts galore on this site from patient after patient after patient where they treated UC Proctitus with rectal meds only, discovering later on that it had "spread". Crohns is actually a little different because it's nature is "patchy" and can be patchy through the whole digestive tract.



So is there proof that this sort of proactive treatment does indeed prevent the spread of Ulcerative Proctitis to effect the rest of the Colon ? I would think if indeed there was enough evidence that it does, then doctors would be remiss if they did Not prescribe oral medication for all cases of Ulcerative Proctitus.

Would this procative treatment also protect against Cancer in the future ?
Posted 9/10/2015 11:14 PM (GMT 0)
I just feel lost.. is there a diet change? What do the suppositories do? How can I feel better? Etc
Posted 9/10/2015 11:50 PM (GMT 0)
Ulcerative proctitis has only a 30 percent chance of spreading, low risk. Taking oral meslamine seems like a waste to me.

Suppositories deliver medication directly to your trouble-spot, your rectum.
Posted 9/10/2015 11:51 PM (GMT 0)
ushippedyourpants: In a way, yes, there is evidence that taking oral mesalamines can prevent ulcerative colitis. It's actually common sense. For example, let's say that a person has left sided or pancolitis or whatever. Let's also say that that person is one of the lucky ones and goes into a clinical remission by just taking oral mesalamines. Clinical remission would mean that there is no visible sign of colon inflammation in the colon anymore. Do the doctors tell you to stop taking the oral mesalamine? No. Just the opposite. They may back it down to a maintenance dose from a full dose but they still want you to take it forever, even if you have no visible colon inflammation. Why? Because they know that by taking it even with no visible inflammation that it will hopefully help keep the patient's UC at bay and prevent further flaring. The same holds true if you take oral mesalamines when you are just diagnosed with UC Proctitus. It can help UC from "spreading" farther up.

Many doctors actually do prescribe oral mesalamines in addition to rectals for UC Proctitus so it's not an idea that I just came up with. Some doctors don't and just wait for it to spread first before treating but for those patients where it does "spread" farther up, their condition worsens and once colon damage occurs it can take forever to heal and sometimes it never heals. Another thing is that there is some thought process that IBS is when inflammation damages the nerves in the colon and nerve damage never heals. So, someone with UC is then diagnosed with both UC and IBS so now you've got two problems instead of just one.

By being proactive and taking both oral mesalamines and rectal meds, the safest of the drugs for UC, you may be able to prevent UC Proctitus from "spreading" and giving you even more troubles, including possible IBS on top of UC.

I think I'm done beating my head up against a brick wall. I'm just trying to help people. If they don't want to listen then they don't want to listen but there have been many people who posted here who had UC Proctitus and did not treat with oral mesalamines and had it spread and then they are in a lot more trouble and often wind up going up the med ladder to immunesuppressants, immunemodulators, or biologics because their UC has gotten out of control because they or their doctors or both did not beat it back when they had the chance to.
Posted 9/10/2015 11:54 PM (GMT 0)
Diet changes are extremely individual with uc. What works for one may not work for another. Sometimes diet doesn't affect uc in anyway (that's the case with me).
Posted 9/11/2015 12:08 AM (GMT 0)

garylouisville said...
ushippedyourpants: In a way, yes, there is evidence that taking oral mesalamines can prevent ulcerative colitis. It's actually common sense. For example, let's say that a person has left sided or pancolitis or whatever. Let's also say that that person is one of the lucky ones and goes into a clinical remission by just taking oral mesalamines. Clinical remission would mean that there is no visible sign of colon inflammation in the colon anymore. Do the doctors tell you to stop taking the oral mesalamine? No. Just the opposite. They may back it down to a maintenance dose from a full dose but they still want you to take it forever, even if you have no visible colon inflammation. Why? Because they know that by taking it even with no visible inflammation that it will hopefully help keep the patient's UC at bay and prevent further flaring. The same holds true if you take oral mesalamines when you are just diagnosed with UC Proctitus. It can help UC from "spreading" farther up.

Many doctors actually do prescribe oral mesalamines in addition to rectals for UC Proctitus so it's not an idea that I just came up with. Some doctors don't and just wait for it to spread first before treating but for those patients where it does "spread" farther up, their condition worsens and once colon damage occurs it can take forever to heal and sometimes it never heals. Another thing is that there is some thought process that IBS is when inflammation damages the nerves in the colon and nerve damage never heals. So, someone with UC is then diagnosed with both UC and IBS so now you've got two problems instead of just one.

By being proactive and taking both oral mesalamines and rectal meds, the safest of the drugs for UC, you may be able to prevent UC Proctitus from "spreading" and giving you even more troubles, including possible IBS on top of UC.

I think I'm done beating my head up against a brick wall. I'm just trying to help people. If they don't want to listen then they don't want to listen but there have been many people who posted here who had UC Proctitus and did not treat with oral mesalamines and had it spread and then they are in a lot more trouble and often wind up going up the med ladder to immunesuppressants, immunemodulators, or biologics because their UC has gotten out of control because they or their doctors or both did not beat it back when they had the chance to.



I'm not sure why you seem offended. All I'm trying to do is understand.
Posted 9/11/2015 12:22 AM (GMT 0)

garylouseville said...
In a way, yes, there is evidence that taking oral mesalamines can prevent ulcerative colitis. It's actually common sense.

Common sense is not evidence; it doesn't even make it to circumstantial evidence, let alone anything stronger. Science doesn't use common sense as its guide when trying to find out how the universe works.

gary said...
For example, let's say that a person has left sided or pancolitis or whatever. Let's also say that that person is one of the lucky ones and goes into a clinical remission by just taking oral mesalamines. Clinical remission would mean that there is no visible sign of colon inflammation in the colon anymore. Do the doctors tell you to stop taking the oral mesalamine? No. Just the opposite. They may back it down to a maintenance dose from a full dose but they still want you to take it forever, even if you have no visible colon inflammation. Why? Because they know that by taking it even with no visible inflammation that it will hopefully help keep the patient's UC at bay and prevent further flaring.



That's because there's actual evidence that taking maintenance medication delays the length of time to the next flare-up.

On the other hand, there's no evidence that taking maintenance medication for an area which has never previously been inflamed prevents inflammation from subsequently appearing in that area. It might do. There's just no evidence that it does.
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