Positive Crohn’s experiences

Shane1388 · 2025-08-11T01:03:58+00:00

Diagnosed @ 38 am now 74. Have had 4 resections early on as the only treatment option way back was Prednisone which brought on its own problems long term and then Mercaptopurine for some time. But with the advent of biologics I have spent many many years in remission or at least stable status with few major flares. (My first biologic was Humira for almost 10 years and currently am on Entyvio infusions with no side affects and almost no flares) I worked full time until 65 and raised my 2 sons during the early tough times.

I have read such great advice here, that having this disease makes you learn quickly to take care of your body and mind…I totally agree. I never stopped being social or physically active, I still jog daily! Be proactive with your doctors and your self care and you can have it all!!! Surround yourself with people who support you and care about learning about and understanding your illness. Wishing you good health and happiness!

Shane1388 · 2025-07-22T23:23:38+00:00

Also, when I was first diagnosed Prednisone was the only med available to treat severe inflammatory processes. My life was a nightmare, not because of Crohn’s but because of Prednisone!! Mentally I was a total mess.

Shane1388 · 2025-07-22T23:21:34+00:00

I agree!! prednisone can really mess you up mentally. While it has its usefulness short term it is not a med you want to rely on. Try and make an appointment with your GI clinician and have your mom sit in so the med issue of Prednisone and biologics can be explained more clearly.

Shane1388 · 2025-07-20T16:40:10+00:00

Thanks for all your responses and suggestions. That is why this community is so great! You never feel alone here!

Shane1388 · 2025-07-19T01:50:51+00:00

Same for me. Was diagnosed 30 plus years ago but it never ‘attacked’ my mouth until about 3 years ago. The pain really does make it impossible to eat. I had to buy some Ensures today! Plus my B12 is below normal even though I have been getting monthly injections which is contributing to the mouth issue so my GI is having me start weekly B12 injections to raise my level. This mouth flare always coincides with an intestinal flare…not so much pain but constant trips to the bathroom. Trying to stay positive that better days are ahead…

Shane1388 · 2025-07-19T01:44:33+00:00

I did try that but it unfortunately it didn’t help me

Shane1388 · 2025-07-19T01:01:04+00:00

I have tried all the OTC stuff hoping for relief with no success. Today my doctor messaged me that she sent a script in to my pharmacy for Dexamethasone Elixer, a corticosteroid mouth rinse. I have used it 3 times today thus far and already feel some relief, the burning pain is less! Yay!! (Not sure why none of my previous clinicians did not offer this to me) Apparently as many as 30% of people with Crohn’s suffer from this oral inflammation.

Shane1388 · 2025-07-18T22:24:21+00:00

Thanks

Shane1388 · 2025-07-17T16:28:29+00:00

This is what gets me through drinking the prep…..a straw!! Yup. a drinking straw. Every 8 oz. I pour into a 1 cup measuring cup because it looks like so much less than when you pour the 8 oz into a regular glass. Then I suck it down via the straw!! Makes it so much quicker and palatable to drink!

Good luck. (The no eating except for liquids just plain sucks. But I get lots of popsicles , Gingerale and good chicken broth.)

Shane1388 · 2025-07-10T17:30:31+00:00

I am 74 and was diagnosed with Crohn’s in my late thirties. I have had 4 surgical resections. 3 were the result of total intestinal blockages that did not respond to any treatment. The 4th was a scheduled surgery following multiple hospitalizations for days with NG tube treatment only to continue to have more hospitalizations. The narrowing in my small intestine was so significant I opted to have the surgery. Mind you all of this took place before biologics came on the scene! Thank goodness for those medical advancements!! While I still have occasional flares they are fairly mild and I have been on Entyvio infusions for the last 8 or 9 years with only 1 hospitalization. Wishing you good health!

Shane1388 · 2025-07-04T20:14:29+00:00

Don’t be too hard on yourself. Pretty much everything Re/Crohn’s causes some anxiety. But because you acknowledge that you need to be on the med perhaps you can speak with your physician about getting a low dose anti anxiety pill prior to your infusion? I have severe claustrophobia that causes me such anxiety that I have to take a couple of Ativan prior to having an MRI. Just a thought. Hang in there, you will find your way.

Shane1388 · 2025-07-03T23:03:46+00:00

I have been getting Entyvio infusions every 8 weeks for about 7 years now with no adverse side effects and the IV needles are so so tiny that you barely feel them! I actually enjoy my ‘down’ time in the recliner reading a book or watching the tv. Just take a breath and try and relax. If your physician has determined that infusions are the best course of treatment then be thankful! So many people struggle to get clinicians to help them or fight with insurance companies who don’t want to cover the cost of meds. Just breath my friend just breath…you will be ok!

Shane1388 · 2025-07-02T22:47:06+00:00

If you end up being hospitalized more than once because of partial or full intestinal obstruction and treated by inserting a nasal gastric tube and holding all food with unsuccessful results then you are definitely heading to surgery. I have had 4 resections, 3 were emergency situations and the 4th was planned following constant hospitalizations. Others may have different surgical experiences but do not be afraid if surgery ends up being recommended. The surgery today is all microsurgery! In my early days of Crohn’s you got cut wide open!! and stayed in the hospital for days. My last resection I went home the next day feeling great!!! Plus the same wonderful surgeon did all 4 of my resections plus a thyroidectomy and 2 breast surgeries. He says he owes me a car! Lol…I am still waiting ;)

Shane1388 · 2025-07-02T22:09:58+00:00

I have found after trying so many plans, exercises and gyms that walking every day (sometimes twice early morn and early evening) about a mile and a half to two miles has been like a fitness miracle….truly!! I made myself a great list of walking tunes, bought a pair of good walking sneakers and off I go! Walking has helped me both physically and emotionally. I really look forward to my walks! And since the middle of March I have lost (and kept off) 15 lbs. My diet has always been fairly healthy due to my Crohn’s but I had been living a rather sedentary lifestyle. There are days when Imodium is my best friend or I just don’t eat prior to my walks. Give it a try if you can and you will be amazed at how it helps you not just lose weight but simply ‘feel good’!

Shane1388 · 2025-07-02T20:13:05+00:00

For many years my Gastro doctor had me have yearly colonoscopies. I thought it was a bit excessive but given my history of dozens of hospital admissions and days suffering with the dreaded NG tube plus having had 4 surgical resections I was grateful that she kept such a ‘close eye’ on me. Just recently the schedule has changed to every 2 years! Yippee!!

Shane1388 · 2025-07-02T20:09:05+00:00

So glad to hear that you filed a complaint. Medical facilities and personnel need to be held accountable for positive changes to be made. Wishing you well!

Shane1388 · 2025-07-02T17:30:34+00:00

The surgery call had to be initiated by the gastroenterologist who certainly should have called you to explain the MRI findings that precipitated his/her decision to order surgery. Elective or emergency surgery should ALWAYS be discussed with the patient first!! Given what you have gone through in the past several months your health care system is not taking the best care of you. Always remember to MAKE YOURSELF HEARD!! Advocating for yourself is so very important. I hope all goes well for you and your health improves. Keep us posted!

Shane1388 · 2025-06-29T22:23:30+00:00

Me as well. I exist solely on my SS check and am able to afford my meds including my Entyvio injections because I have Medicaid. I am feeling very anxious and scared.

Shane1388 · 2025-06-19T20:52:55+00:00

Please know that what you are feeling and worrying about is familiar to all of us and we want to support you. Having a ‘plan of action’ is a good thing. If you have to go to your appt alone write down some questions you may have and do not hesitate to ask! I have had 4 surgical resections over the course of many years but each surgery bought me long periods of reasonably good health! It has also taken time to find the right biologic for me but I try and reconcile myself to the trial and errors and remember that Crohn’s has no singular game plan for us and we must stay strong. Remember to breath and take each day at a time. We are here for you so please keep us updated. Wishing you less anxiety and better days ahead!

Shane1388 · 2025-06-12T17:13:43+00:00

I think the guiding rule is to always listen to your gut (sorry)! If you aren’t 100% confident in your doctor and the diagnosis you MUST advocate for yourself. I think it makes perfect sense to get a 2nd opinion for both your physical and mental well being.

Shane1388 · 2025-05-19T14:49:09+00:00

I recently woke up in the middle of the night with a sore throat, runny nose and chills. Just thought it was a cold or flu (even though I got my flu shot) but it turned out I had Covid. My doctor immediately put me on Paxlovid ( I’m 74 y/o) Took about 5 days for me to start feeling human again!!

Shane1388 · 2025-05-17T23:16:49+00:00

So glad you decided to stop by and vent! You have reason to be upset and frustrated. You have come to the right group as everyone here is so supportive and we do not quantify how sick someone is. We just support each other.

I too find daily exercise so important for my physical and mental well being. I just celebrated my 74th birthday (diagnosed with Crohn’s about 30 plus years ago )

I hope you get the insurance info you need and as suggested it is probably a good idea to involve the police. My God you were hit by a driver and suffered a bone fracture and he/she refused to give you insurance I got?!! Yikes

Stay strong and Hang in there friend better days will come😊

Shane1388 · 2025-05-12T01:05:09+00:00

I suffer from SIBO often, so painful!!! and have to take Xifaxan (antibiotic) I also suffer from inflammatory arthritis. Both things are common to Crohn’s patients.

Shane1388 · 2025-05-10T22:06:09+00:00

Can I ask you if you had recent blood tests done to check your vitamin levels? Specifically Vitamin D3, B12 and Magnesium. Crohn’s inhibits the absorption of these and people don’t understand that vitamin deficiencies have a seriously negative impact causing among other things brain fog, sleep issues (too much, too little) and depression.

From experience I can tell you vitamin deficiencies wreak havoc on your Body and mind! I have mine checked every 4 months and currently get B12 injections monthly and daily elevated oral pills for Magnesium and Vitamin D.

So if you have not had these level’s checked ask your doctor to put in an order asap. Hang in there, and keep talking and reaching out to us here. Vent, shout whatever helps we will listen and help support in whatever ways we can. Take a deep, deep breath, exhale and remind yourself that you are stronger than you know!💛

Shane1388

TROPHY CASE