Chrohn's Colitis anyone ?

[Miss Rose]

I have Crohn's Colitis - crohn's in the large bowel.

I was just wondering who else out there has it there? Do you have it anywhere else ? Is is a good place to have it? What is specific about having crohn's in this area? Symptoms, pain, drugs. I am only recently diagnosed so trying to find out as much as possible about how my disease is likely to progress.

Please share your experiences. I thought it might helpful for all of us large bowel sufferers to get to know each other a little better - not that I don't want to get to know everyone else too ! It's just that this disease seems so diverse that if I can try to narrow it down to the actual affected bowel part a little better it might help me understand it and how it is likely to affect me a little more.

 

[pb4]

I have crohn's colitis too, I also have perianal crohn's skin tags (having anal issues are more common when CD is affecting your colon, the skin tags, fistulas, fissures, luckily I've never had a fistula but fissures were horrible and thankfully I haven't had those in ages, so the good news is, what's common symptoms to have with crohn's colitis is not written in stone, it varies from person to person, just that those symptoms are more common with CD affecting the colon.

Other symptoms that are also more common with crohn's colitis is excess mucous and bleeding and often our rectoms can get involved when having crohn's colitis as well (this is referred to as proctitis).

It's hard for anyone to guess how your disease may progress though since you could be mild or moderate or severe or bounce from anyone of those catagories.

Symptoms of rectal involvement (proctitis) often include the feeling of incomplete evacuation (called tenesmus), if you happen to experiance that then you'll need rectal meds to treat it....as far as meds used for crohn's colitis, they are the same as used for ulcerative colitis, usually Asacol, imuran and I'm sure there's others just drawing a blank on them right now (sorry).

When I first got sick my CD actually started with the perianal crohn's skin tags (which is very odd/rare since it typically starts in the terminal ileum) then it moved internally affecting my rectom, colon, TI as well as my anus all at the same time...that's what's bad about having CD, it can affect any part of the GI tract from mouth to anus and more than one area at a time.

I'll post some more info regarding the extraintestinal manifestations that are common as well....Here's a good link...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1925026/

I hope you find this helpful

 

[pb4]

I thought I'd post this for you as well, it's the 5 subtypes of CD, that way should CD happen to appear somewhere else for you then you'll have a bit of a heads-up on it.

The five types of Crohn's disease with their symptoms are:

Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.

Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.

Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.

Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.

Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.

And this link also discusses the 5 subtypes of CD with a little more info....

http://www.ehealthmd.com/library/crohnsdisease/CD_types.html

 

[Peaches]

I have also been diagnosed with Crohn's colitis, but I believe my ileum may also have involvement now as well. I have had 6 inches of my descending colon removed 13 years ago - my only surgery so far. I have had one fissure, but thankfully, no fistulas. My disease has shown up in different places at scope time through out the years. I have also had ulcers on my tongue for years that no one could explain - but that went away soon after starting Remicade - and have not come back. So - I am sure they are Crohn's related as well.

 

[fenway1971]

I'm part of the Crohn's Colitis club too.

According to colonoscopies and pill cam studies, I'm inflamed throughout the entire large intestine but not in the small intestine. The inflammation is non-continuous (hence CD and not UC) and I have microgranulomas (also a sign of CD). in 2008, i was told inflammation was "severe" and in 2009 it was down to "mild-moderate". this was before 6-mp. next colonscopy is in feb and we'll see if i've improved. i feel great, so hope it is.

Drugs: started on Colazal and Asacol but later discovered my body rejects them - it actually makes my symptoms worse. then took pred and now on 50mg of 6-mp. currently not flaring. yay!

Side effects: i've been told i have a skin tag...then again, i've never had occasion to look down there myself. LOL. i get periodic kidney stones which is a side effect.

Symptoms: for me, i've never seen blood in stool. when i flare, it's loose and probably there's blood but i've never seen it. i also get right side tenderness in abdomen.

Surgeries: knock on wood I've been able to avoid it.

Management: for me it's all about managing stress and diet. keep those in check and my symptoms are in check.

 

[Cookie]

Put me down as a member of the Crohn's Colitis club too! It is funny to read these and see just how different everybod'y symptoms are. For instance, my main problem is with rectovaginal fistulas, fissures and skin tags...my rectum is in horrible shape. On the other hand, although I had very bad D prior to my initial diagnosis, once I got that cleared up, I haven't had too much problems since (occasional, but not any long term weight loss or anything like that). That was 6 years ago. I do not have a ton of bleeding...what i do see i believe to be from fissures as it is bright red and mostly when I wipe. I do get globs and globs of mucous, however.

I have had two surgeries to repair a rectovaginal fistula. I had another within a year of the first surgery. The second surgery was in October and it's looking like I am in the process of developing another fistula already. They really are hard to control. Many people respond to Remicade for fistulas, but it did not work for me. The good news is that not everybody gets them.

As far as meds, I was initially given Asacol, which worked to control my constant D. I have also tried Remicade and Imuran for the fistula repair...neither gave me positive results. Because I have persistent fistula problems, I practically have lived on Cipro and Flagyl because I get abscesses branching off of the fistula. That's about the extent of it all.

BTW, thanks for starting this thread. I have often wondered how different people are affected by different types of Crohn's, but never thought to ask. I hope others post their experiences as well.

 

[Magpie]

I have Crohn's colitis as well - another different experience to add to the club...

I have moderate inflammation in my caecum (first part of the colon) and mild inflammation in my rectum. My main symptoms are bloating, diarrhoea with mucus and bleeding - I've had 3 big bleeds this year and a number of smaller ones. Two of these bleeds have been bad enough to land me in accident & emergency needing blood transfusions. Because the blood is very dark red, at first the consultants thought it might be from the small intestine or stomach, but bleeding from the first part of the colon can be dark as well. I am often anaemic because of the blood loss, so often tired. And I often feel dizzy / light headed - this could be due to the anaemia and /or low blood pressure and / or blond hair!

Drugs - I'm on Budenoside (steriod) to dampen down the latest flare-up, Azathioprine (immunosuppressant) and Asacol (anti-inflammatory). Shake me and I rattle... The Aza was hard to tolerate at first (made me feel very nauseous), but the combination of drugs seems to be working as I haven't had diarrhoea or bleeding for almost a month now.. woo hoo!

Same as fenway - managing stress and diet is really important - I'm on a dairy-free diet and try to avoid processed foods as much as possible - I can definitely tell the difference when I eat well or badly.

 

[Binxybop]

I am recently diagnosed with crohns colitis.

Started off IBS diagnosis then I started passing lots of blood and mucus and following a sigmoidoscopy and biopsy I was confirmed having crohns colitis.

I get pretty bad constipation when I get very bloated and unable to go to the toilet for 3 days or so which can then be followed the next day with 5-8 trips to the toilet with varying stool consistencies!

I don't really know what my triggers are yet as I am still finding my feet with it all (definitely can't handle chorizo anymore and I LOVED that so much!) . I have lost a little weight but not a great deal like some people can. I tend to get very fatigued and light headed.

I am taking Prednisone and Pentasa at the moment and I sometimes get very sore, split and stingy bum-hole (maybe TMI sorry I find Sudocrem best way to deal with the soreness).

I also get very bad gut cramps underneath the ribs, down both sides (more severe stabby pain lower right of my bellybutton) and also aching in my back. Wherever the pain is I find my skin very hot to the touch.

I think I may have more issues than just the Crohns in my large colon and thankfully my doctor has ordered a barium x-ray to check out my small intestine too.

Sorry i'm still a bit in the early stages of diagnosis to offer more info, but hope it helps show you how very different everyone's symptoms are.

x

p.s. if you can handle them and the dont give you the squits... bananas are a wonder fruit, I eat at least 2 a day now and they really fill you up

 

[Cookie]

I also get very bad gut cramps underneath the ribs, down both sides (more severe stabby pain lower right of my bellybutton) and also aching in my back. Wherever the pain is I find my skin very hot to the touch.

I get this too! Usually when I am bloated. The hot thing is kind of weird. It was very bad last night. My stools have been really thin and my BMs small and infrequent, leading me to believe that I am inflamed/ partially obstructed. I was kind of thinking that I have gas and it is unable to escape. When I lay down my tummy makes the craziest noises. Then I am less bloated in the AM. Is this your experience too?

 

[Binxybop]

I get this too! Usually when I am bloated. The hot thing is kind of weird. It was very bad last night. My stools have been really thin and my BMs small and infrequent, leading me to believe that I am inflamed/ partially obstructed. I was kind of thinking that I have gas and it is unable to escape. When I lay down my tummy makes the craziest noises. Then I am less bloated in the AM. Is this your experience too?

There doesn't seem to be a trend to when I get bloated as I get bloated at nights and more recently also the mornings. I guess I always feel a little bloated. I find that when I do lie down to go to bed I pass a lot of wind (and yep, its usually stinky ). I get the grumbles, squeaks and puuurrrfffs rumbling around the insides, i get pain with them too, but I think that must be the inflammation I have going on at the moment

I haven't really had the skinny poop, but definitely the small beads of poop usually mingled with some kind of mucus. Nice.

oo:

 

[Miss Rose]

I just realised I did not post my symptoms so here goes.

Before the pred and pentasa which I started two weeks ago and which have been like magic so far, I have been in what I now know to be a flare since May.

I had loose poop, lots of mucus, bloating after eating and lots of pain - mainly during the evening. Because crohn's had crept up on me slowly it is only now I am feeling better that I realised just how sick I had got. I did not lose any weight and was still eating ok - mouth/head had not made the conection between eating and pain (I just like food to much). Exhausted all of the time. Pain mainly in LRH quadrant and across my tummy/middle area. My colonoscopy pics look horrendous with loads of blood and goo ! (sorry TMI - its just that they were so shocking!).

I've not seen my consultant yet nor had any further tests/reports other than the one handed to me on the day of my colonoscopy. I wonder if I have crohn's anywhere else - have any of you guys been offered any other tests to see if you have it higher up ? - my terminal illium was clear (looked it anyway - awaiting biopsy result).

I sometimes get pain when drinking hot drinks and wonder if this is crohn's or just acid. I also get pain soon after eating which seems a bit quick if just my colon is affected. Any opinions ?

 

[Peaches]

I get this too! Usually when I am bloated. The hot thing is kind of weird. It was very bad last night. My stools have been really thin and my BMs small and infrequent, leading me to believe that I am inflamed/ partially obstructed. I was kind of thinking that I have gas and it is unable to escape. When I lay down my tummy makes the craziest noises. Then I am less bloated in the AM. Is this your experience too?

Binxy and Shady - this is me *exactly* - has been for years. The *heat* thing is exactly how I explain to my doctor that it feels. The skin is sensitive to the touch and feels hot and if I hover my hand over that area I can actually feel heat radiate off of it that is different than other areas! I always thought I was a weirdo with that symptom, so I'm glad you both posted it. For me, when this happens I am fully aware that I have active inflammation in that area - it is always in the area where my worst disease was - and where my resection was 13 years ago. I also get the bloated thing at night and look preggers - and then in the morning - it is like the fart fairy came and took it all away :O) Weirdest thing ever.....

Miss Rose - sometimes when you eat or drink- and I find especially if it is warm or hot things - it can get your gastrocolic reflex going - which makes your guts move. Maybe this is what is happening with you?

 

[Miss Rose]

Thanks Peaches - I've not heard of a gastrocolic reflex before but I just googled it and it seems to make sense - theres a link to IBS too which is what I was told I had before CD (and me the fool believed them).

I alwaysgo to bed with the bloated preggers belly and when I was flaring I knew I was full of gas but could not fart it out - no matter what. I still don't know where all that bloat goes to but it really is all gone in the morning.

Do you think the fart fairy is related to the tooth fairy - and just what does she do with all that toxic gas ?

 

[Peaches]

Well - they could be related, but she sure doesn't leave money under my pillow :O) I have often wondered if I'm laying there just passing gas (hubby says he never notices -but then again - he's snoring so loud how could he LOL!) - or if your body just reabsorbs it- I hope not - cuz that would probably mean leaky gut syndrome and I don't want that either! Who knows - I'm just glad it is gone in the morning and wish there was a button I could push to make it go away immediately! I'm sitting here right now and look 6 months preggers - so aggrevating! And all I've had to eat all day is 2 Ensures and an english muffin with some PB&J on it. Not huge gas producing food to me......

 

[fenway1971]

Just caught up on this thread. I get that burn also. My skin is then warm to the touch. And, I'm constantly bloated despite futile attempts at doing ab exercises.

 

[Binxybop]

I wanted to add something to this, maybe get a bit of advice from fellow crohns colitis sufferers...

For the past 2-3 days I have been having very achy sides and back with the very hot skin. I also notice some very painful, I guess a tenderness, just around the back/side of my ribs which is very painful if pressed (only lightly). This pain is on both sides. (This is all after a very bad painful experience about 3 days ago when I was in screaming pain for 20 - 30 mins at the front right of abdomen between ribs and belly button. Still not sure what that was, but glad it is over!)

I have been going to the bathroom "normal" for me except for when going for a wee... which has become very odd, needing to go at around 4am, 6am and then again at 8am. I have never had this before, can crohns inflammation press on the bladder?

I am on Pred and Pentasa at the moment and eating and drinking fairly normally too.

Has anyone had the tenderness with the aching or even the going the bathroom for a wee thing?

I would maybe like to see my doctor about the tenderness as it is new, but I don't want to seem like I am over-reacting to what could be the general Crohn's inflammation tenderness...

 

[Peaches]

Binxy - what level of pred are you on? I find that sometimes pred makes me have to go pee more often than normal (and drink more too).

As for your pain that you are describing - it sounds familiar to what I can get when I have active inflammation in my gut. Mine has always been in my colon - and that type of pain (under the ribs) tends to correlate when I have inflammation in my transverse colon. Not saying this is what you are having - but maybe? If you have recently tapered down on the pred to a much lower dose - I might give the doc a call just to make sure they don't want you to bump back up for a bit since you had that incident. Hopefully it will pass - fingers crossed!

 

[pb4]

Binxy, I personally would go to the doc, the things you're describing shouldn't be ignored and don't worry about the doc thinking you're over-reacting, when you have a disease like CD it's better to be safe than sorry.

 

[BWS1982]

Just caught up on this thread. I get that burn also. My skin is then warm to the touch. And, I'm constantly bloated despite futile attempts at doing ab exercises.

Ab exercises will condition and work the abdominal muscles underneath, but bloating can be from water retention (subcutaneous, often from pred or sodium) or it could be visceral fat (fancy name for mid section fat)...Your elite P90x routine should take care of the fat, and if it's sodium, well, that will come in time with modulation. No worries, you started your fitness resolution for New Years months ahead of the rest of society, Fenway.

 

[suschex]

I know this is an old chain of posts but would love to find others with Crohn's Colitis! Anyone else out there now?

 

[mama21princess]

I was just told today that I have Crohn's Colitis. Last May, I was diagnosed with ulcerative colitis. I have been on Lialda since then, but I have a lot of abdominal pain and cramping. So, I had another colonoscopy in November, and saw my gastro today for follow-up from that. He told me that now the inflammation goes deeper into the lining of my colon. My worst symptom is the abdominal pain. I also have quite a bit of joint pain. My BMs are often painful, but I haven't had diarrhea in a while.

 

[suschex]

I was just told today that I have Crohn's Colitis. Last May, I was diagnosed with ulcerative colitis. I have been on Lialda since then, but I have a lot of abdominal pain and cramping. So, I had another colonoscopy in November, and saw my gastro today for follow-up from that. He told me that now the inflammation goes deeper into the lining of my colon. My worst symptom is the abdominal pain. I also have quite a bit of joint pain. My BMs are often painful, but I haven't had diarrhea in a while.

Sorry you are still hurting/struggling but glad they seem to have found you the correct diagnosis! Are they going to change your treatment?

 

[mama21princess]

Thanks. He is doubling my dose of Lialda for the next couple of months. Then if that doesn't help, I will have to start 6mp.

 

[norcalcrohnie]

I have Crohn's Colitis as well with the inflammation in my colon. The last colonoscopy at the end of December still showed it still being moderate to severe but my intestines looked good according to my GI

 

[JeanB]

I know this thread was a while ago but I'm just wondering if anyone is still out there!

I was diagnosed a few weeks ago officially with crohns colitis. I'm struggling with 3 rectal fistulas that are created painful parianal abscesses which have gone down quite a bit since they put me on antibiotics.

I start Remicade this week I'm just wondering if anyone with a fistula problem has tried this drug and has positive results. I havent had any surgeries... yet

I'm 22 and have only been experiencing these symptoms for a year its nice to know other people know how it feels

 

[Debflwr]

Hi I'm new to the group I have had Crohn's for 8 years and on Nov 2 had my surgery. My Crohn's was by the ileum. Recovery has been rough been home 2 weeks still have some pain and major discomfort. Surgery was keyhole except by the navel and to make a larger incision due to the fact my intestines were hard as a rock. Only lost 12 inches but still uncomfortable everyday feels like more muscle ache than anything but still not able to do anything. I walk around throughout the day high helps. But how long until your back to normal

 

[ronroush7]

I have crohn's colitis too, I also have perianal crohn's skin tags (having anal issues are more common when CD is affecting your colon, the skin tags, fistulas, fissures, luckily I've never had a fistula but fissures were horrible and thankfully I haven't had those in ages, so the good news is, what's common symptoms to have with crohn's colitis is not written in stone, it varies from person to person, just that those symptoms are more common with CD affecting the colon.

Other symptoms that are also more common with crohn's colitis is excess mucous and bleeding and often our rectoms can get involved when having crohn's colitis as well (this is referred to as proctitis).

It's hard for anyone to guess how your disease may progress though since you could be mild or moderate or severe or bounce from anyone of those catagories.

Symptoms of rectal involvement (proctitis) often include the feeling of incomplete evacuation (called tenesmus), if you happen to experiance that then you'll need rectal meds to treat it....as far as meds used for crohn's colitis, they are the same as used for ulcerative colitis, usually Asacol, imuran and I'm sure there's others just drawing a blank on them right now (sorry).

When I first got sick my CD actually started with the perianal crohn's skin tags (which is very odd/rare since it typically starts in the terminal ileum) then it moved internally affecting my rectom, colon, TI as well as my anus all at the same time...that's what's bad about having CD, it can affect any part of the GI tract from mouth to anus and more than one area at a time.

I'll post some more info regarding the extraintestinal manifestations that are common as well....Here's a good link...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1925026/

I hope you find this helpful

I was just told this year that my Crohn's Disease had gone into Crohn's Colitis. One of the medications I am on for this is Lialda. I have not been put on Asacol. I have the cases of not emptying myself completely.

 

[Lisa]

I know this thread was a while ago but I'm just wondering if anyone is still out there!

I was diagnosed a few weeks ago officially with crohns colitis. I'm struggling with 3 rectal fistulas that are created painful parianal abscesses which have gone down quite a bit since they put me on antibiotics.

I start Remicade this week I'm just wondering if anyone with a fistula problem has tried this drug and has positive results. I havent had any surgeries... yet

I'm 22 and have only been experiencing these symptoms for a year its nice to know other people know how it feels

Hi Jean - I started Remicade just over 10 years ago and it took care of my fistulas with results evident within a month. Please check the Remicade sub-forum for lots more stories.

 

[nitty]

Hi! I have crohn's colitis. Originally I thought I had UC as that's how my symptoms presented, but a scope changed the diagnosis as there were patches at intervals throughout the colon.

I achieved remission with a burst of prednisolone then mesalazine and azathioprine, but recently I have had to stop the Aza due to a viral problem following a flare (after trying to stop the mesalazine).

My symptoms are only rectal related and are pretty mild, but unfortunately I still need the stronger drugs to get back into remission. I'm currently being screened so I can start Humira soon. I'm quite anxious about having to take it, but I guess if it prevents things getting worse then it will be worth it.

 

[ronroush7]

Hi! I have crohn's colitis. Originally I thought I had UC as that's how my symptoms presented, but a scope changed the diagnosis as there were patches at intervals throughout the colon.

I achieved remission with a burst of prednisolone then mesalazine and azathioprine, but recently I have had to stop the Aza due to a viral problem following a flare (after trying to stop the mesalazine).

My symptoms are only rectal related and are pretty mild, but unfortunately I still need the stronger drugs to get back into remission. I'm currently being screened so I can start Humira soon. I'm quite anxious about having to take it, but I guess if it prevents things getting worse then it will be worth it.

Best wishes.

 

[Bellamoo Becky]

Anybody still out there with Crohns Colitis?
Had a flare recently with dark red bloody diarrhoea..after having 2 weeks of watery diarrhoea..this is quite a change for me..as I've had Crohns Colitis for 15 years..but never experienced these sort of symptoms.
Just before this I was changed from asacol to Pentasa..and wondered if I might have reacted to this which caused the diarrhoea.
Anyone else had this problem?
My tummy has been gurgling ever since!
On prednisolone atm coming down from 60mg to 20mg in the last 4 weeks..lowering dose 1mg at a time
Any advice or help would be great.
Oh and also have a perianal fistula aswell..my cup overfloweth!!
Much love guys
B xx

 

[ronroush7]

I have Crohns Colitis. I would call your doctor about the diarrhea since it has the dark red blood. Best to you.

 

[Bellamoo Becky]

I actually ended up in A&E as it was a Saturday!..they took all bloods and examined me ..all bloods were normal..no infection or elevated inflammation..bloody count normal.and nothing abnormal rectally.
The sent me home with the pred!
I see my consultant on the 20th..when I think another investigation could be on the cards!
Just wanted to know if anyone else has had these symptoms with Crohns Colitis?
Much love x