I am struggling today.

[Anna]

Hi everyone,
Sorry in advance this is probably just going to be a rant - but hopefully you'll all know where I'm coming from.
So I've been sick for almost 7 months, and only been diagnosed with Crohn's a month ago. I started Prednisolone about mid January at 15mg. That helped get rid of the diarrhoea I was having, but has done nothing else helpful. At the time my gastro said I'd be on Pred for 3 weeks, so, despite being completely skeptical about drugs (especially corticosteroids) I thought "yeah ok I'll take it for three weeks." I've been on it now for a good 7 weeks and there is no evidence that I'll be off it soon. The gastro wrote me a prescription for 4 repeats! I did have the dosage dropped to 10mg when I had terrible insomnia and was slowly going mad from sleep deprivation.
I'm now also on mesalazine (pentasa), and I haven't noticed any positive effects from that either.

I went to my GP today (I have started seeing a lady who runs a medical clinic which embraces and works alongside alternative medicine, she is also a specialist in nutritional medicine so I had great hopes for her..) who said that my bloods showed my potassium to be low. I said "doesn't prednisolone interact with potassium absorption?" Well she didn't know anything about that which I thought was weird for a doctor. She then prescribed a potassium supplement. I was pretty funny about taking the supp when I knew I'd probably get nothing from it but she said "Oh you'll only have to take it for one week, that's all." By this time I'm having flashbacks to the gastroenterologist saying "You'll only have to take Pred for 3 weeks." Sure I'll just add the potassium supplement to the other 50 supplements I take twice a day which aren't making me feel any better.

Meanwhile I have been feeling terribly dizzy and fainty for a good 1.5 months now, as well as having pains in either my chest or my eosophagus (not sure which - I certainly hope it's the eosophagus and not a heart attack). No doctor seems to want to address that.
I really just don't know what I should be expecting right now. Is this just what Crohn's feels like?? Like you can't go anywhere or do anything because you're just too sick and tired? Like you can't make plans because I don't know whether I'll be doubled over in pain then?? This isn't living! Are these drugs supposed to have actually changed something by now? What the hell??

Last night after eating plain yoghurt I had incredible stomach pains to the point where I was almost passing out from pain. Only barely managed to stumble down the hallway to lay in agony on the bed for about 20 mins. Later on I ate a poached egg and still feel like throwing up from it. Foods are very quickly being eliminated from my diet!

Also (though may be borderline TMI) I seem to be having abnormal breakthrough menstrual bleeding. I am worried this is a side effect of the drugs. Any advice on this would be great...

Anyways not quite sure how I should be feeling right now. I'm trying to stay positive but it doesn't help when you feel like ****.

 

[AndiGirl]

Hi Anna! I'm sorry that you are feeling so rotten. A couple of years ago I had several Crohns flares in a row. When I started coming out of them, I thought I was having a heart attack. I couldn't get a hold of my husband, and my mother was in Norway. I called my father at work and he rushed me to the emergency room. They were aware that I had CD. After doing the usual blood work and being hooked up to an EKG, they discovered that my potassium was very low. I was immediately hooked up to an IV. That is something that I have had to watch out for when I flare-up. When the potassium is low, you can feel pretty lousy.

The only thing that I can suggest is to see the doctor and have a plan to keep that potassium level normal. Keep a log of what your eating also. I've learned from trial and error that when you are going through a flare stick with those foods that you can tolerate even though they may not be the healthiest. You can always take supplements. Some of the healthy stuff could cause you to up-chuck and that wouldn't be any help at all. Even though the Prednisone has earned a dubious reputation, it really works when you are flaring up. You will find relief, but there probably will be some side effects. Hand in there sweetie.

 

[PeninsulaLil]

Hi Anna:

It is a drag when I am flaring especially as you point out the fatigue and not wanting to make plans because I can't be sure how I'll feel at any point. Prednisone did help but I've had most long term remission after a course of Entocort. Had less side effects than Pred too. However, for stomach/abdominal pain, nausea and vomiting I am taking protonix (don't know what it's called down your way). Started off with pepcid and something else but nothing helped until doc switched me to protonix. And, yes, no fun to be downing so many pills and supplements, but it beats the heck out of feeling like crap.

I still think one of the things missing is emotional support when first diagnosed. For me it was not just all the new medical information and lingo that was overwhelming, but the adjustment to thinking of myself as not a "well" person, not knowing how it would effect my relationships, my family life or my ability to function on my job. It was all too much. We go to a GI and get treated for physical symptoms, and maybe get referred to a nutritionist, but not enough attention is paid to emotional and psychological needs of the newly diagnosed. IMHO

Things will get better! Stick around the forum. Wonderful, supportive people here!

Lilly

 

[Grumbletum]

Lil, I think you have hit the nail on the head re: the emotional support. At the pre-diagnosis stage too. I know there's something wrong with my bowel but not what. Have had no advice from the several docs I've seen about how to deal with my symptoms, other than to take painkillers. I'm looking for a new job at the moment, but worry that an interview might clash with any appointments or treatments I might need to have and depending what's wrong, whether it will affect any job I might succeed in getting. All adds to the vicious stress-aggravate symptoms-more stress cycle.
Anna hang on in there and I hope you'll be feeling better soon. Thank God for this forum - the emotional support is brilliant, and thanks to some great advice, I have learned some coping strategies that help to minimise the pain etc.

 

[Debbie]

Hang in there.Having crohns is hard,you cant predict how you will feel from day to day.You will learn what foods set you off so you can avoid them.Sometimes eating any kind of food will make you sick.On those days I dont eat anything and just try to sip sprite.I really hope you feel better soon,I have had crohns for over 20 years and some days are just better than others.