Colonic Crohn's

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*Phoebe*
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Date Joined Sep 2005
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   Posted 8/11/2009 6:49 PM (GMT -7)   
Hi everyone, I had my appointment with the specialist yesterday and I finally found out what type of crohn's I have. Turns out I have Colonic Crohn's, affecting the colon. My specialist is a professor involved with a lot of leading Crohn's research, and he said while there are advantages and disadvantages to each different kind of crohn's, if he had to choose, he would rather have small bowel or small bowel/ileum combination crohn's.
While colonic crohn's means I am less likely to have a re-section, apparently this form that I have is much more aggressive and harder to treat. My specialist is currently undertaking a study of over 800 crohn's patients, of which I am one, and he said that of these 800, around 40-45% have small bowel crohn's, 40-45% have small bowel/illeum crohn's, and only 15-17% have colonic crohn's like me. It was hard news to take because it makes my diagnosis kind of glum, but I was just wondering if anyone else on the forum has Colonic crohn's (not involving small bowel or ileum)..... I have a lot of peri-anal disease which i think is a common symptom of colonic crohn's. I also have lots of bowel symptoms and run to the toilet A LOT with lots of ugency, and I have had bleeding. I am grateful for my doctor for giving me a frank explanation of the situation, but it was kind of hard news to take.

On the positive side, I finally qualified for remicade and will get my first infusion in a few weeks. He is looking to switch me to humira after around 8 months of Remi, to make it easier for me so i can administrate it myself.

I hope u are all doing well - anyone else out there with exclusively colonic crohn's?

PS86 smurf

Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/11/2009 7:29 PM (GMT -7)   
Do you mean Crohn's colitis? That's what I have it stays to the large intestine. I had a total proctocolectomy and I have been off all medicines since my surgery.
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/11/2009 7:38 PM (GMT -7)   
Yea lots of us have Crohns colitis, its been said for a long time that its less likely to get crohns colitis then say crohns in the illieum which is the most common.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 8/11/2009 10:11 PM (GMT -7)   
I also have a diagnosis of crohns/colitis but have had teminal ileum disease as well. I too have been involved in Dr Raddford Smiths studies Im pretty sure I was the one who told you about him. Unfortunately I had to have an ileostomy and rectum removed, so you are one of the lucky ones pheobe with the possibility of never needing surgery and with the drugs they have on the market I cant understand them saying u will be hard to treat on meds when they havent tried the big guns yet. I hope they go well for u and u bounce back in no time. take care and keep us posted

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/11/2009 10:42 PM (GMT -7)   
I too have crohn's colitis, it does not always stay limited to the colon, anyone with CD is at risk of their CD affecting any part of their GI tract (from mouth to anus) at any time and even more than one area at a time as well...

When I first got sick (it started on my anus with perianal crohn's skin tags, which is rare cuz CD typically starts in the small bowel area) and quickly started affecting my TI, colon and rectom along with my anus all at the same time for about 2 yrs, it has remained constant on my anus with the tags and in my colon my entire 18 yrs of having CD, it has and still does come and go in the rectom (which is common for those that have crohn's colitis).

The good news is it's (crohn's colitis) treated with the same meds used to treat ulcerative colitis...getting your colon removed when you have crohn's colitis does not put you in the clear since the CD at some point will more than likely start affecting other part(s) of your intestinal tract (unlike with UC, cuz UC is strickly limited to the colon/rectom). Of course if you're bad off enough then surgery to have you colon/rectom removed is still an option.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/11/2009 10:53 PM (GMT -7)   
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.  It is distinguished from ulcerative colitis in two ways. First, there are often areas of healthy tissue between areas of diseased tissue; ulcerative colitis is always continuous. Second, while ulcerative colitis always affects the rectum and areas of the colon beyond the rectum, Crohn's colitis can spare the rectum, appearing only in the colon.


My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/11/2009 10:54 PM (GMT -7)   
Gastroduodenal CD - Gastroduodenal Crohn's disease, which affects the stomach and the duodenum (the highest, or beginning, portion of the small intestine), is often misdiagnosed as ulcer disease. The correct diagnosis frequently is not made until various ulcer treatments have failed, or until Crohn's disease is identified farther down the gastrointestinal tract. Symptoms of gastroduodenal CD include loss of appetite, weight loss, nausea, pain in the upper middle of the abdomen, and vomiting.

Jejunoileitis - Jejunoileitis is Crohn's disease of the jejunum (the longest portion of the small intestine), which is located between the duodenum and the ileum. Symptoms include mild to intense abdominal pain and cramps after meals, diarrhea, and malnutrition caused by malabsorption of nutrients. (The majority of nutrients are absorbed in the jejunum.) Fistulas (abnormal openings in the intestinal tract) may form. These can link a diseased area of the small intestine to another area of the intestine or another organ, such as the bladder. Fistulas may increase the risk of developing infections outside of the GI tract.

Ileitis - Ileitis affects the ileum (the lowest, or last, part of the small intestine). Symptoms include diarrhea and cramping or pain in the right lower quadrant and periumbilical (around the bellybutton) area, especially after meals. Malabsorption of vitamin B12 can lead to tingling in the fingers or toes (peripheral neuropathy). Folate deficiency can hinder the development of red blood cells, putting the patient at higher risk of developing anemia. Fistulas can develop, as can inflammatory masses.

Ileocolitis - Ileocolitis is the most common type of Crohn's disease. It affects the ileum (the lowest part of the small intestine) and the colon (the large intestine). Often, the diseased area of the colon is continuous with the diseased ileum, and therefore involves the ileocecal valve between the ileum and the colon. In some cases, however, areas of the colon not contiguous with the ileum are involved. Symptoms of ileocolitis are essentially the same as those present in ileitis. Weight loss is also common.

Crohn's Colitis (Granulomatous Colitis ) - Crohn's
colitis affects the colon. It is distinguished from ulcerative colitis in two ways. First, there are often areas of healthy tissue between areas of diseased tissue; ulcerative colitis is always continuous. Second, while ulcerative colitis always affects the rectum and areas of the colon beyond the rectum, Crohn's colitis can spare the rectum, appearing only in the colon.
 
I posted both because there is pertinant info in each  :)


My bum is broken....there's a big crack down the middle of it! LOL :)


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/12/2009 2:22 AM (GMT -7)   
Thanks so much for all of the info guys. The thought of surgery to remove it scares the hell out of me. My Crohn's has gone largely untreated since I was diagnosed 4 years ago. I am hoping the new meds mean I will live a surgery-free life (i've only had surgeries for abscess/fistula). I have responded well to pred in the past so i hope that getting things under control will mean i dont have to have the surgery?? Is it common with us crohn's colitis chronnies?

For those who have had proctocolectomy, how long did you have crohn's before you had surgery? Did you not respond to the other meds?

thanks

PS86

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/12/2009 2:27 AM (GMT -7)   
phoebe, to paraphrase jesus, please try not to worry about tomorrow and what ifs. today has enough troubles of its own.

i always worry when i see threads like this on the forum - i'm a rare & unusual case of cd, i must be really sick & really a serious case & may have a poor prognosis - and am not convinced it is helpful. we can't see the future, and neither can docs.

all the best,

ivy (ecuse brevity - sore hands)
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 8/12/2009 3:59 AM (GMT -7)   
Pheobe! Ivy is right we cant and docs cant see in the future, and with all due respect your not the worst case, you are lucky that u respond well to prednisone. What defines the worst case? In our own way we have all had it tough with this disease, thats the nature of it and all diseases for that matter. I didnt think they had even mentioned surgery for you. Please dont misunderstand me Im not having a go at you Im just hoping to help you see the positives that you have and believe me you do have a few. I used to think my life was over and like many went through hell but now I need to start focusing on positives, I however still have my down times. Answer to your question I was diagnosed with crohns 21 years ago and 5 years ago was called crohns/colitis I had to have my first crohns surgery 10 years ago so I went for 11 years not needing it and the meds kept it under control and in the past years have undergone a right hemicolectomy, then this year alone I had an ileostomy and then 4 months after that surgery I had a proctocolectomy. I consider myself lucky to be alive. Keep your chin up and think positive, I know its easier said than done and at times I need to take a leaf out of my own book but the more miserable you are the worse the disease seems to be. take care ((((((hugs))))))

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/12/2009 4:26 AM (GMT -7)   
Actually theres another big difference I'd like to add to pb4, Crohns disease affects every layer of the disesased portion of the bowel, where as UC only affects the first layer, the mucosal layer. To me thats quite different, and this is how they usually tell whether its CD or UC when doing colonoscopies.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/12/2009 4:34 AM (GMT -7)   
ps. It is possible that your doc is trying to encourage you to have realistic expectations about the Rem. I think you are setting yourself up for a huge disappointment by expecting it to be the solution to all your problems and to save you from further medical troubles in the future. You have a chronic, life-long disease, Phoebe. Reading this forum should be enough to demonstrate that a lot of people still have issues and side effects and fatigue and other difficulties even while on the high powered anti-TNF medications.

Yes, you might be one of the lucky few who get to live a completely symptom-free life for a while, but please remember that Infliximab is *not* a cure, and that there is a possibility that it will not work for you, or that you may react to it and be unable to take it ever again, and / or may stop working after a few doses. I think it will be safer for you, mentally and emotionally, if you do not expect too much of this drug... and then you can be pleasantly surprised if it does help.

I don't say this to make you miserable, Phoebe. I'm just trying to spare you some pain if you end up reacting to it, and / or you don't respond to treatment. As I said, I suspect your doctor is trying to make you realise this too. You have a type of disease that is difficult to treat, he says, therefore it may be safer for you not to expect miraculous rresults.

Kindly,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 8/12/2009 3:57 PM (GMT -7)   
Hi guys

Ivy, I totally understand what you’re saying, the drugs might not work for me, but at the moment it is my only way of looking ‘on the bright side’ because everything seems to be falling into a heap. But as andorable says (and I am so grateful for it, A.) – my case could be a lot worse. I mean a lot of people with crohn’s have surgery as soon as they’re diagnosed, and that wasn’t the case with me, so maybe things aren’t as severe as I see them as being. And they haven’t mentioned surgery for me – I think it was just hard hearing that my disease is a harder one to treat, but I have such strong faith that I am with the best possible team of doctors now so I am in the right hands and that is so comforting to me. I think its just a matter of taking it one step at a time to get through this period and find out whether the drugs do work for me….. but my dr who is very experienced in this whole arena believes that I should respond well – not that I WILL, but that I should, and at least that’s something….. I just have to keep my hopes alive that this will clear my disease and give my poor colon a rest!

Perhaps my crohn’s is not as aggressive as I’ve previously believed, it’s just that it’s a more aggressive form – but that also makes me eligible for these meds so that’s a positive thing. Dr Radford-Smith treats a lot of patients on TNF therapy and believes I will respond well, so I have to go with his professional opinion. He did mention the fact that people build up resistance to the TNF after a while, and that it is a matter of time before that happens.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/12/2009 4:01 PM (GMT -7)   
Phoebes, you have a lot of options besides the anti-TNFs and surgery that you and your docs haven't even *begun* to explore yet. I think you have a lot more options than you realise. Try not to feel too desperate or despondent.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/12/2009 4:25 PM (GMT -7)   
Yeah I'm trying, I'm just freaking out a bit at the moment, i bought chicken in to work to have for breakfast and I'm too anxious to even eat it. I don't think thats a good sign. It's almost like 'if i don't use my colon, it can't get damaged!' Which of course is never going to last for long.

You're right though Ivy, there are lots of other treatment options, and one of them I have to put more effort into is the SCD.

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 8/12/2009 4:29 PM (GMT -7)   
I have Crohn's colitis - mostly rectum, some perianal. I was diagnosed almost 2 years ago. Tried the 5-ASA route for the last 18 months without achieving remission. Currently going on 2 months of 6MP and starting to see improvement as I build up to a therapuetic dosage. This is the first time in a long time that I have not had bleeding. No side effects to date.

My disease is unusual in that it appears to only affect the extreme distal colon with no skip lesions. Hoping for the best!
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Canasa (1000mg): 1 suppository nightly
6MP - currently at 50mg working my way up......


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/12/2009 6:07 PM (GMT -7)   
Hey Former, does your doc give you rectal meds when you have proctitis? I find luck with using cortifoam, although it doesn't reach that high into the colon but it certainly aids with covering the entire rectom for sure, it's the only rectal meds that work for me...if you don't use rectal meds when flaring in the rectom (proctitis) then it will get harder to treat that area and may end up spreading further up as well.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 8/12/2009 6:39 PM (GMT -7)   
Phoebes, have you asked your wonder team about counselling yet?

As far as not hurting your colon, that's not completely nutty thinking. That's the reasoning behind therapies like enteral feeding / naso gastric tube feeding / TPN feeding. More info in the nutrition link in my sig, if you're interested.

However, it's not good that you're developing food anxiety (that's not a judgement; I have it too; just a sign that things aren't good with you). Again, I really think a counsellor might be a good idea.

atb,

ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 8/12/2009 7:44 PM (GMT -7)   
Hi Ivy, are you on the nutritional therapy at the moment? I have thought about it – honestly – because my lifestyle I think might just suit it. I live alone and a lot of the time I don’t have the time or energy to make proper SCD meals for myself, and often end up eating omelettes with cheese every night of the week! I am trying to stick to the SCD, and eating more fruit, veg etc, but just the last few days, everything that I eat is causing gas, bloating, pain and running trips to the toilet, to the point that I am scared of walking on my lunch break as I get caught in a shop somewhere and have to ask for the nearest toilet.

I am trying to be gentle on my system but you’re right, it is like a food anxiety, only today, I’ve never felt like this before. I know when I’m feeling better than this I usually love food. Hopefully going back onto the antibiotics will clear up some of my symptoms as they did before.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/12/2009 7:50 PM (GMT -7)   
At this point phoebesky I would start doing a liquid diet (use ensure/boost, ect) for just a couple of days to hopefully get things settled down again and help with your anxiety (exercise is great for anxiety BTW and I exercise regardless of how bad my flares are, I just modify my exercise according to my severity).

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/12/2009 8:36 PM (GMT -7)   

Hello Phoebe,

And then there is weird me. I only have perineal disease and I think I've had it 4 years.  No other symptoms.  I think there were 2 or 3 others who used to post who only have this perineal disease.  My doctor called my disease "virulent", and at one point the fistula opening in my rectum was 2.5 cm wide.  What generally what you want to hear.  But even after becoming allergic to remi and humira, 6MP seems to be working.  The fistula opening is much smaller and I haven't had an abscess for a year.  Praise God!

I really feel for all of you who have D, strictures, and other CD manifestations!!  I totally recognize that there are worst situations.  Including other diseases and conditions.  I did laugh, Phoebe, when your doctor said "there are advantages and disadvantages to each different kind of crohn's".  Advantages to having CD??  Really?????  I'd rather not have it at all.   tongue   

I think what the others have said is good to think about.  I went through a grieving process when my doctors made it clear what I had.  But we only have today.  No promises for even tomorrow.  Having this disease has given me a deeper understanding of how much we are in God's hands.

Take care.


Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/12/2009 9:24 PM (GMT -7)   
Hi fallcolours

The fistula hole I currently have seems to be getting bigger and bigger too, so I am really looking forward to getting these meds, and I hope they will close it up. I don’t have too much draining from it at the moment *holds thumbs* as my abscess was located in the right butt cheek and the fistula is right in the middle….. so the abscess is healing up and the drainage is becoming less, but the fistula hole looks like its getting larger? Which is scary, so I don’t look down there all that often – I don’t think it does me any good.

After my 1st infusion my colo-rectal surgeon is going to take out my mushroom and he wants to eventually take out my seton too, but I am guessing that wont be for a while yet since the hole is so big at the moment!

So FC do you have skin tags too? I have a heap – feel like I really have ‘the whole shebang!!’ – my surgeon said they should ‘shrink’ down once inflammation is improved.

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 8/12/2009 9:26 PM (GMT -7)   
And PB4, thanks for your advice, I think I will take it, at least not eating breakfast or lunch and just having a light dinner? I ahvent eaten anything yet today and I feel so much better than usual. Do you think that would help? I am just anxious to eat at work because it makes me sick and I always have to run to the disabled toilet for extended periods. I know my bosses don’t mind, but I just hate having to pick up my little packet of babywipes and RUUUUUUN!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/13/2009 1:15 AM (GMT -7)   
I'm not on exclusive enteral therapy at the moment, Phoebe, but I have been. Back before meds like Infliximab came on the market, we had to rely more heavily on things like enteral feeding and TPN... so I've done both.

I do think it would be worth while discussing such therapy with your doctor and dietitian, esp if you're having such food anxiety at work. The good thing about being on a complete liquid diet (either enteral or TPN) is that it can reduce your trips to the toilet, and that can be a big help.

Plus, some doctors / dietitians like to think about using nutritional therapy to "boost" the effectiveness of the Infliximab.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/13/2009 3:48 AM (GMT -7)   
Hi Phoebe,

Yes, I have a small skin tag now. I've had several small ones removed a couple of times. They stopped growing when I was on remi (I became allergic during the 5th infusion) and now on 6MP. I still get cellulitis down there every few months. Get a cold, get celluliits! But now I know how to spot it and what to do about it. Life is so much better now that I know more. Now if I get something like irritated skin, it doesn't freak me out because I know what it is and know how to treat it. Knowledge is good!

It sounds like your doctor is being positive about your treatment, which is excellent! I am so praying that you get on remi soon and you start to heal. You know it won't heal over night. The body just doesn't heal that fast, even in non-CD. Now the patience you have been forced to learn will come in handy! But it will get better over time. Yeah!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

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