Share Facebook
Crohn's Disease Forum » Your Story » Nothing Special


07-07-2017, 07:55 AM   #1
Schmidt
 
Join Date: Jul 2017
Location: Teaneck, New Jersey
Nothing Special

Hi all. Ive never written anything on any forum before but i figured why not. I was diagnosed with Crohns a few months ago and I dont know how to feel about it. My only real symptom was unexplained weight loss, but after a colonoscopy, the doctor said I definitey have crohns. I feel bad saying I have crohns though because I feel no symptoms. I feel like im cheating the people that experience the terrible stomach pains. Like i shouldnt even feel like i have crohns because it doesnt really affect me. Every now and then ill get a stomach pain but its pretty rare. I eat generally well and try to work out a few times a week. The doctor told me its possible the crohns gets worse with time but equally possible that it stays mild my whole life. He still recommended I take Lialda to manage the inflammation but after trying it for 2 weeks and feeling awful from it, I decided im not taking any medication for crohns unless it eventually gets really bad. I dont like taking meds if i dont have to. I believe in natural medication like just being healthy overall. I came to this forum to see if my night sweats was due to crohns and it looks like it is. Last night i woke up sweaty and freezing. Anyway, this is my story. Im a man in my mid 20s in case you were wondering. Thanks for listening
07-07-2017, 08:28 AM   #2
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

My Support Groups:
Welcome to the forum. I'm sorry to hear that you're not going to treat your Crohn's. If you had cancer, would you depend on natural medication? The problem is, if your Crohn's gets worse, you could develop comlications like fistulas, abscesses or strictures, and end up having surgery. It always saddens me when people choose to play Russian Roulette.
__________________
Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
07-07-2017, 12:01 PM   #3
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
I agree with Tuff.You really haven't given the meds enough time,and I would definitely tell your doc.your plans.Crohns is a nasty little sneak and can creep up on you at any time with some foul symptoms.But it can also stay mild for a long time with no symptoms at all (that are noticeable). Please don't be complacent.Having said that,I am med.free and have been for almost two years.Apart from pain meds. etc.But I was diagnosed in 2006 and I believe I know my body and crohns well enough by now to know when I need to seek help.Welcome to the forum.We all help each other but we're all different..Crohns Mantra.
07-07-2017, 12:05 PM   #4
nitty
Senior Member
 
nitty's Avatar
 
Join Date: Dec 2011
Location: United Kingdom

My Support Groups:
Hi,

Don't feel guilty! Be thankful that you're only at the mild end of the spectrum. I suspect that another member of my family has CD, but after a significant flare about 30 years ago they have had no symptoms except for the occasional twinge of lower right abdo pain. My consultant said some people are lucky like that.

I understand you not wanting to take what seems like unnecessary medications, especially if they make you feel worse. Perhaps you could take other measures like cutting down/cutting out sugar - a well-known inflammatory agent - and/or introducing something like Kefir to your diet to promote good bacteria in your gut.

You could always ask to try another version of the medications: I had to stop taking Mesavant as it made me feel chronically fatigued, but I now take Salofalk granules, a different form of the same basic drug, with no problems.

However, if you do start to get progressive symptoms, PLEASE don't wait until it's really bad before taking medical action, because by then there will already be significant and often irreparable damage. This is a disease that you really do need to keep on top of before it spirals out of control. Take heed of advice given from scopes/investigations, as problems can be brewing without you knowing.

Good luck.

Last edited by nitty; 07-07-2017 at 12:05 PM. Reason: spelling
07-07-2017, 06:33 PM   #5
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I agree with what has been said above
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
07-07-2017, 07:26 PM   #6
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
All good advice. I agree.
07-11-2017, 07:21 AM   #7
Schmidt
 
Join Date: Jul 2017
Location: Teaneck, New Jersey
Thank you all for your wonderul advice. I really do appreciate it and will look into taking medication again. The question I have though is wouldnt I start feeling it if it gets worse? For now I still dont have any physical symptoms despite slight trouble gaining weight. Im 5"11 and 155 pounds but Im working on putting on more muscle. And I also forgot to mention that I do take vitamins. I take an iron supplement, a B12 vitamin, and a probiotic pill every morning. I love vitamins and eating right is the way I feel most comfortable. The doctor told me the chances are equally as likely that the Crohn's gets better or worse so why would I take medication that could easily have harmful side effects that are permanent. Thats why I feel like I'd rather take my chances without medication. If I start to feel pain, I would look more into it but until I do, why would I? I already cut out coffee because it always upsets my stomach. Are there other foods that are good to cut out?
07-11-2017, 07:57 AM   #8
nitty
Senior Member
 
nitty's Avatar
 
Join Date: Dec 2011
Location: United Kingdom

My Support Groups:
I think the best advice I can give is to spend lots of time reading around this forum and sub-forums. You will soon realise that everyone experiences Crohn's differently - we all have different symptoms, many don't fit the 'textbook' symptom lists and find it very hard to reach a diagnosis. Some people need a very specific diet, others can eat almost anything.

You are only at the beginning of your life with Crohn's and you will gradually work out what works for you.

I would suggest that you at least start a diary and keep it daily. It's the best way to notice whether you can relate any symptoms to food/stress/other. It's so easy to forget what happened/when without keeping a record. Suggested things to note are food/drink each day, any pains and when they occur, changes in stools (frequency, urgency, description [I know!], any blood/mucous), weight changes, mood.
Remember that there can also be extra-intestinal Crohn's related problems that you may not have or you may not have linked to your gut. For example, I have developed a very bizarre mild joint pain which roams from one place to another from day to day. Some people have skin issues or other problems.

Don't panic, read around, learn to listen to your body and don't ignore it if anything changes.
07-11-2017, 08:03 AM   #9
tinatin
 
Join Date: Jul 2017
Location: United Kingdom
Hi Schmidt: Sounds great that you are so fit and taking care of yourself through supplements, exercise and probiotics. I understand your reluctance in light of your otherwise good health. It's true some medications we take have side effects, some more serious than others. But consider this: the damage in your bowel right now may not go into remission without a little help. And its effects can be as permanent as medication side effects. Definitely weight these concerns with your doctor (or several doctors to get a more rounded perspective). Good luck!
07-11-2017, 08:20 AM   #10
Scifimom
Senior Member
 
Scifimom's Avatar
 
Join Date: Aug 2010
Location: THESSALONIKI, Greece

My Support Groups:
Honestly no, you wouldnt start feeling it if it gets worse. You may just wake up one day feeling like crap and when you go see your doctor you will find out that hou have an absess a couple of fistulas a partial blockage and a gouple of fissures just to make things more fun (NOT). Sometimes this sneaky little bastard works undergound without any major symptoms until one day it jumps and TADAAAAA! you are half dead and need surgery ASAP (It has happened to me). So a) Make sure you do regular check-ups b) Talk to your doctor about medication, there are lots of options available for mild cases and you will find what suits you.
Think of crohns like having hypothyroidism, you would HAVE to take a pill then, well its sopmething like that.
07-11-2017, 09:49 AM   #11
DougUte
Senior Member
 
DougUte's Avatar
 
Join Date: Jul 2010
Location: Kaysville, Utah

My Support Groups:
Hi Schmidt. I was diagnosed in 2010 at age 46, but I can look back and see mild crohn's symptoms for 20 years before that. When things got bad, it happened very fast. If I could, I would go back and do everything I could to avoid having surgery. I had 3 feet of small intestine and .5 feet of colon removed in fall of 2010.

Scifimom is correct, when things start to get worse, you may not feel any worse for a long time. Crohns is a sneaky, ugly, disease and needs to be treated.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
07-12-2017, 07:40 AM   #12
Schmidt
 
Join Date: Jul 2017
Location: Teaneck, New Jersey
nitty - do you know if the mild joint pain is related to the Crohn's? What you described is exactly what happens to me. Most days there is a different joint with mild pain and it seems to come from nowhere. My right foot hurts one day and the next day its the left one. I didnt think it was related to Crohn's.
Also to the rest of you - thanks again for your advice. I will do more research and I think I want to take some form of medication now. I dont want to look back and regret it if I would ever need surgery from not treating it now. How often should a regular checkup be? Once a year? Does a checkup include a colonoscopy? How often should I be getting those?
Also I love the diary idea, Im gonna try and keep one.
07-12-2017, 08:04 AM   #13
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Schmidt, I am 60 and when you reach 50 they usually try to do a colonoscopy every two years.

07-12-2017, 08:31 AM   #14
Scifimom
Senior Member
 
Scifimom's Avatar
 
Join Date: Aug 2010
Location: THESSALONIKI, Greece

My Support Groups:
Colonoscopy every two years for me, I tried to skip the two year mark twice and both times I went on a flare, I am not going to do it again. I am on Remicade every 8 weeks and I do a blood work on the day of the infusion, I am also having regular checks of feritine potassium and b12 because I am low on all of them (Potassium is the lowest) I check them every 4-6 months. Once a year I do a major "check everything in site dont miss a fucking thing" check up including blood sugar, echocardiogram and ultra sounds (Gyno ultrasounds I dont think you need them)
07-12-2017, 10:20 AM   #15
nitty
Senior Member
 
nitty's Avatar
 
Join Date: Dec 2011
Location: United Kingdom

My Support Groups:
Hi Schmidt,

I'm pretty sure the pains are Crohn's related, or at least maybe to do with some other related auto-immune condition. I looked into whether it was Sjogren's syndrome but blood tests didn't show anything up, although that's not always certain anyway.

For me, I get a pain (or more than one) that starts in the afternoon/teatime, and which gets progressively worse through the evening. Sometimes I will need to take co-codamol to help me sleep if it is fairly bad, but most of the time it is an annoyance rather than disabling, although sometimes I might need to use both hands to lift the kettle, for example. The pain is still there in the morning, but it eases off fairly quickly. A few hours later pain might start up again, but usually in a different place. It's mainly my hands that are affected (wrists, individual knuckles) but last night it was behind my left knee, and the night before that was my right big toe joint. Often my deltoids are a problem.

It's very bizarre. I now realise that I think I had a longer episode of this a couple of years ago when I was having physio for what I thought was a repetitive strain injury, but which resolved after a few months with no apparent reason.

I have diagnosed myself as having Palindromic Rheumatism - have a Google and see if that describes what you have. Reassuringly, it only affects soft/connective tissue (even though it feels like the bone is sore) and it doesn't carry with it the degenerative problems of other types of arthritis.

With regards to follow up, I have usually had the regime of seeing my IBD nurse every 3 months, and the consultant every year - unless I'm flaring, in which case they see me when I need it. If you do take some meds they should at least be following you closely to start with as you will need regular blood tests - each type of drug has it's own protocol for this so I can't tell you exactly how often you will need it.

I have only had scopes when I was flaring, but it's only been 6 years since I first got ill and I've had two flares/two scopes in that time.
Reply

Crohn's Disease Forum » Your Story » Nothing Special
Thread Tools


All times are GMT -5. The time now is 04:38 AM.
Copyright 2006-2017 Crohnsforum.com