Is remission possible?

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Dec 14, 2011
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Hi

I am very unhappy... I was really hoping the results of my colonoscopy would have been cancer or something curable. Instead my short finds are ulcers along whole colon looking like crohn's.

Wikipedia and other random google searches seem to say it doesn't go into remission often or if it does it is short lived. Is this true? I don't think I can stand the flaming diarrhea at short random intervals much longer. This is way more painful then all my other injuries combined.

This is no fun and no good. I really hate my bodies betrail of itself.
 
hmmm can't delete the post and put it kinda in wrong section... so guess I might as well make a full story thingy. Since you might as well know if I survive the next few weeks I will probably add visiting here to my daily forums to poke at.

3ish years ago my colon was happy. It would have a bm once every other day. All was good. I then ate at a place that had served us some bad salsa. This led to everyone that was at that restaurant to expel the contents of their bodies out both ends for days. Everyone else recovered but me. Mine changed but was what everything says is normal so I did not think much of it. (2x bm per day~ still mostly consistent and good).

2ish years ago I had an iritis. Was interesting one pupal was completely frozen the other would respond and make funny shapes as it was partially frozen. inconclusive blood tests and lots of eye drop prednisolone later it was back to good. (eyes at time are really itchy but it has never recurred). Both my eye doc and regular doc were involved. My regular doc had me do a gluten allergy test and some other stuff as well and nothing.

about mid way through this last July my nose mucosal membranes have become inflamed and not gone down/recovered. Even though I have left the environment I am in thrice and never had allergies before so its weird they are so swollen. regular doc and gi doc have no idea why.

I went on a backpacking trip in another state and from the shift in altitude, workload, dehydration, etc I was constipated for a change. 3ish days later I exploded and ripped a good fissure or two into my bottom. Not much fun, but it more or less was healing on its own.

I went on a second backpacking trip in another state and mid trip I had a second constipation and explosion event that re-ripped the fissures. Not so much fun and this time they did not heal much.

Then I went to Florida (see lots different environments yet my nose never unswelled so at least that is environment independent). After I got back from Florida all seemed well.

About a week later things changed. I started to have lots of burning flaming diarehea, many times a day. It would make the fisures hurt. Pain is so intense i would grip down hard into my quads and try not to scream. When home I would jump into the shower and clean up and get some quick releif by doing so. Regular work was unbearable, I am consulting on the side as well and one of the companies I was consulting for has having huge problems so my stress level was off the charts. After about 5 days I called up my regular doctor and scheduled an appointment. It was another 5 days out. I couldn't take it so I looked for random stuff online and read about imodium and how it worked similar to oxycodine, it just doesn't cross the blood brain barrier. So figured great this will help, since the later freezes my gi tract up solid, and it wont give me the horrid side effects since it wont touch my brain. And sure enough it worked, it brought me down to 2 bm/day which was infinitely better.

I went to my regular doctor and he unhappy with imodium and rightly so, citing the potential for it to slow stuff down and allow out of control bacterial/toxin growth. So I stopped... back to pain and lots of diarrhea. Doctor had me collect stole samples and had me start a diet of pro-biotic yogurt, self hand washed vegetables, and Metamucil. This did cut down on the burning aspect a little. It did nothing to decrease frequency. We talked on the phone after he got all the results back. He asked if there were any changes and I told him what I was experiencing. He said to discontinue the diet. (I kept eating yogurt and taking the Metamucil as anything that helps with the burning was worth it). He also told me to finish up the antibiotic he never prescribed ._. I thought that was odd but whatever. I mentioned it and he said oh.... blood leukocyte test and parasite blood leukocyte test were positive. But all the individualized parasite, bacteria, etc tests came back negative. So that showed inflamed gi track. He then forwarded me to a GI doc.

3 weeks of suffering waiting for the first appointment with a gi doc was not fun. When I finally got in to the gi doc's pa. we went over my story and medical records. Poked around my stomach but nothing seemed out of the ordinary. After hearing everything she decided to go ahead with a colonoscopy as soon as possible. So had one 5 days later (yesterday, tuesday). Prep stuff wasn't all that bad. Everything was already flowing out of me. So the prep stuff speeding things along was better then not since it did not really increase frequency but it did decrease burning since there was so much extra fluid there!

So here we are now. preliminary findings being chrons. As I said above I am very unhappy I don't know what to do. I sure home something can happen to stop this cause it really hurts and is no fun. Work is hard but mandatory can't stop going, hanging out with friends is near impossible when you have to go randomly every 5~30 minutes. I hate my life.

current symptoms:
diarrhea 20+ times a day~ some days better some worse seems random. usually bile yellow/green colored but will be completely random between bursts. occasionally terry black which means bleeding some where :(
night fever 99~100
itchy eyes
nausea sometimes
newly developed cough~ (something I got from a coworker i think)
headaches
pain
itchy butt
painful butt when coughing and sphincter tries to contract inwardly!
tired (messed up sleep schedule from work and from bathroom visits)
unnaturally cold feeling (normally I feel very hot when in a room at 72+f, recently I have been keeping my home at 75~80f and still feel like I am freezing)

symptom I wish I had:
weight loss! ha (222 down from 250 last December, intentional weight loss from exercise and stuff, goal is 209~ so I can have a normal bmi)

I hope something can make it stop :/ cause I don't know how much longer I can take this. 2 trips to the bathroom to type this up not counting the one right before starting to type....
 
Yes, Lowone, there is a remission. I have spent most of my life after the diagnosis in remission. I am there now. I have raised 3 beautiful children, maintained a career, traveled, laughed, played, and pretty much enjoyed my life. It takes effort to achieve remission and one plan does not fit all. For me, the journey to remission and maintaining said remission has been one of many aspects. I have had to heal emotionally as well as physically. Crohnies have different degrees of this disease and different symptoms. It is as individual as the individual themselves. Don't think that all of the info on the net is true. There are a lot of Crohnies living the good life. We have our bad periods but it makes us appreciate the good times even more. Keep us posted.
Wendy
 
dr said it appears to be a moderate case, but they are not calling it confirmed tell biopsies come back. She also took more blood to hand off to prometheus labs to attempt to predetermine the direction my case may take.

She gave me 16 days worth of lialda (mesalamine) to see if I can tolerate it, but have to wait for breakfast tomorrow to start. I sure hope this does something but after leaving the dr and getting to work(and a computer) and reading about the drug. I am left wondering if it will work since it's outer coating resolves in the illium and mine is useless and just launches it's contents into orbit will it have time to work? Also WOW I have never seen a drug you take 4.8 grams of before!

Post colonoscopy I am now finding it difficult to convince myself to eat, just not hungry and feel a mix of blah and full immediately after eating even a little... Weird weird cause I never have had a problem devouring all food insight before.

Thanks for the responses.
 
Remission is a glorious place. 29 years of having crohns I would say a good decade worth of total remission, another decade of so so manageable issues and almost another decade worth of not to many good times. During the bad times its important (at least to me) to take it one day at a time and sometime one minute at a time. I know its a very hard thing to try to adjust to but it really helped me out.
 
3 hours later there is the drug, protective skin that is supposed to melt in ileum, still 3 @ 99% intact and 1 at 80% intact laying in the toilet.... :( no fair if there is supposed to be relief it sure wont be any time soon at this rate of digestion.
 
We have all been there. LOL remission is possible but total remission is a bit harder place to get to. According to my doc I am in remission at the moment but it does not feel like it to me, wind,stomach cramps,and diarrhea does not sound like remission does it ? seriously tho you will get better, it just takes time.
good luck

David
 
Yep remission is possible and for some can be for good lengths of time, I was dx 25 yrs ago and have had 2 remissions one for 2 years and then for nearly 6 yrs. Try not to get too down hearted as Wendy said a normal life is very possible, I too have held down good jobs got married and have two wonderful children so don't lose the faith.
As for the meds I know that issue of them flying out of your body before they have even dissolved, have you tried bowel rest? sometimes it can give your system a chance to heal a little and sometimes even slow it long enough to start to the process of absorbing meds, also ask if your meds come in granular form, this helped me greatly. Oh and the coating on some meds can come out making it look like they weren't dissolved when the contents actually had. Mesalazine- Asacol is one med well know for that.
Good luck and know we are all here for you.
Gwen xxx
 
there is remission

Hi there -

I just want to pipe in two things:
1) There is remission. Better days can be ahead of you! (I do hate to type that because I am afraid I may be jinxing myself).
2) When you are flaring, like you describe, I recommend consuming nothing but some type of liquid whole meal replacement drink (like Ensure or Boost). Personally I found this to be the best way to get some calories and rest my bowels.

Good luck!
 
What is "bowel rest" internets claim long hospital stay with iv neutrients? This does not sound doable to me. To much to do at work. Whole meal replacement drinks are they good? Should I avoid any flavor? Chocolate seems to irritate the weird sores on ether side of my tounge. Scared now to put stuff in me that may cause a negative change cause.....

Interesting changes though 3 days on lialda now, and between that and my advanced diet of probiotic yogurt and campbells soups with cheese toast... Almost all the burning searing pain is gone!!! I still have to go to the bathroom randomly every 5-30ish minutes. But the pain is almost all gone! It's changed from intolerable hell to just an annoyance. So much better oh so much better.

Is this normal for shifts like this to happen? I assume I have a fair wait for ulceration to heal before much else changes...... But almost no pain!!
 
Last edited:
Dr called and confirmed crohn's.... Bought scale today down another 8lb in 6 days.

So now I have unhealthy weight loss too ya...... 208lb so now "normal" BMI. Now if only I can stop it here.
 
Glad you are feeling better! Sorry to hear about the diagnosis. I, too, am glad I didn't have the internet to scare myself. I did request information from CCFA and learned a lot from them.

As far as finding the medicine in the toilet - some are designed that way. I am not sure about Lialda, but Pentasa dissolves into little white balls, and the Asacol that I am taking now comes out looking whole. The coating is what helps it release where it is supposed to be, so it is durable but releases the medicine.

Milk and cheese are often a no no when you are flaring. Milk can aggravate your digestive system. Also, salads are not so good either. There are threads to help you with that. As far as flavoring in the meal replacers, I haven't heard of any that is worse or better. Just your preference. But, I would be wary of the things like Slim Fast because the have insoluable fiber to help you feel full and that can cause you problems. Stay with Boost, Ensure or something similar.

Start reading! There is lots of information here. Here is hoping you will go into remission quickly!
 

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