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A Different Crohn's Story(long)

I just joined this forum, but I have been reading all the stories for quite awhile. I have been thankful to hear that I am not alone with this illness. However, my story with Crohn's started out a little different. In late September 2010 I started to get a really bad cold. This is not strange for me, as I run a home daycare and I usually get a terrible cold during the fall and then I do not get any colds during the winter. This cold was a little different. It brought skin problems, ezcema in strange places and the worst was the start of my problem with mouth ulcers. At the same time, my husband and I decided to separate, so I thought between my immune system down and the stress, this was the cause of my cankers. The mouth ulcers started out as one or two, but they were constant. I was never without a canker. As my cold got worse, so did the mouth ulcers, until finally I had about fifteen to twenty and could not eat anything without pain. At this point I had been to a couple doctors for other things and had the ulcers checked, but they kept putting it off as stress. I thought the same thing because I had no other symptoms except the unusual skin issues. By mid November, I could not bear it anymore and I went to a doctor specifically for the mouth ulcers. He tried to be very helpful, looking in books and on the computer and then decided to send me to an Ear, Nose and Throat specialist, even after I told him that my brother has Crohn's Disease. I also found that when I had many ulcers, I was exhausted and just felt ill. Once they eased up a little, I would feel better, but not great. Still at this point, I had no gut problems, at all. I ended up seeing the Ear, Nose and Throat specialist and he biopsied one of my ulcers. After waiting a month for the results, they came back just fine. However, after four months of just mouth ulcers, skin problems and fatigue, I started to have diarrhea many times a day, anal fissures and I always felt lousy. I informed my throat specialist, but he thought we could wait another month, to see if the symptoms went away. Yes, he also knew my brother has Crohn's. Unfortunately, a week later I ended up in the hospital with extremely low potassium levels from the diarrhea and not eating or drinking, my knee was full of fluid, I had inflammation bumps on my legs and my fissures were extemely painful. Within two hours of being in the ER, the hospital GI was called with all my symptoms and a colonscopy was scheduled for the next day. When the GI came in to talk to me, he was already talking like I had been diagnosed. The doctors told me that I was a text book case of Crohn's Disease, whatever that means.
It has been just over eight weeks since I have been diagnosed and I just finished with Prednisone and I am on 1000 mg of Pentasa four times a day.
I had to take a few weeks off from work to let the ulcers in my GI tract and colon get better, and I am still on a low residue diet to ease my bowels. I am now finding that I am having more bad days than good. My symptoms are not as extreme as some, but I always feel tired and lately I have been facing some naseau and dizziness. Often I am up in the night with cramps and diarrhea, which does not help with the fatigue. I am finding it hard to run my daycare, because I do not have the energy for the children and my joints ache so much. I may have to close it down and look for something else.
Some of the positive things to come out of this is that I lost 25 pounds and my husband and I worked things out and are doing well. He has been very supportive despite not fully understanding what I am going through!
 

Terriernut

Moderator
Oh Brenda, sounds like you are 'normal' for crohns. Which is not good for you. But normal for crohns can be alot of things! When is your follow up appt with the GI? Have they tested you for vitamin deficiencies as well, because most likely you have them. That explains the fatigue as well. Never mind the big D, which will wear you out in no time!

Great news your hubby and you are working things out. You will need support as you go thru this.

I will leave advice to more experienced members of this forum. But welcome to you, you are in the right place!!

Misty
 
I have had one follow up appointment with my GI about a month and a half ago, and of course, I was feeling great, but about a week later I started to have good days and bad days. I go see him again in two weeks and the vitamin defiencies is one of the things I want to talk to him about. Hopefully that is the fatigue and dizziness problem, but I may need to change my drug, as well.
 

Terriernut

Moderator
I hope you can get in before 2 weeks! Perhaps you should ring and let them know what your symtoms are and they may get you in sooner? It's just that other drugs can take time to work, and you need to be healthy soon for your business dont you? Never mind for yourself in general!

It's just you dont want to get worse. You need to get a handle on this sooner rather than later if you can.

Misty
 

Crohn's 35

Inactive Account
Hi Brenda welcome to the forum! :welcome:... I have to say your crohns came in the back door lol... I had cankers all through my life but never had more than one until this year, now I have one or two at least a few times a month. It can be medicinal and Crohns related. Sucks and they hurt. Many people have tried a peroxide and water rince but I havent. No two persons are exactly the same in this disease but all your symptoms are not unusual. I see you are in Ontario and using the new Ginger Gravol helps the nausea, sometimes I suck on the lozenges kind. For being at home or night I use the regular gravol to stop the nausea. As for the diahreah , Questran, which you doctor can prescribe helps alot. Avoid imodium as much as possilble and no ibuprophen. Nsaids are also a no no, and asprin based which leaves tylenol left. If you can drink ensure or isopure if you dont like Ensure, to help put back the nutrients. Do you have pain? And if so where? My main area is Right lower Quadrant. Ileum area.

What part of Ont are you from? I have been all through most of Ontario lol. Take care, hope I helped somewhat. Welcome aboard!
 
Misty, you sound just like my husband. I am the kind of person that feels like I am bothering the doctor, unless something is really, really wrong with me. That is why when I finally went to the hospital, my GI tract was full of ulcers, I had an arterial bleed and my fluids levels were so low I almost caused damage to my heart. I guess I have to learn to change this attitude now that I have been diagnosed with Crohn's
 

Terriernut

Moderator
Hah! Brenda, I NEVER go to the Dr! I end up in hospital almost dead and have emergency surgery instead! DONT do what I did! Otherwise you will be naming your stoma Stan like I did!
Nuff said!
Misty
 
Hi and welcome Brenda!
I've never heard of Ulcers in a Crohns patient before, but the rest sounds like that dreadful word 'normal'! I hope you're all okay soon!
 
Pen, thanks for some of the information. I am lucky so far with the cankers. Ever since they put me on prednisone in the hospital, I have not had one. After four months with them everywhere in my mouth and throat, it feels great. Unfortunately, I am not on the prednisone any longer and am afraid they will start coming back. Only time will tell.
I know to avoid immodium and ibuprofen, as I tried both before going to the hospital and they told me it was a no-no. I was actually taking about three extra strength advil every three to three and a half hours to help with the pain from the cankers and my GI thinks it could be one link to what triggered my Crohn's. I was also taking it for a problem tooth in the summer. Who knew?
Most of my pain is due to cramping, but sometimes I have pain on my right side, as well. Ileum area, too.
I am from Peterborough, Ont born and raised. A little far from Thunder Bay, lol, although my brother did live there for a few months.
 
Hi and welcome Brenda!
I've never heard of Ulcers in a Crohns patient before, but the rest sounds like that dreadful word 'normal'! I hope you're all okay soon!
My brother never had ulcers with his Crohn's so I did not know that was a part of it either, until I did some research and it said that you could have ulcers from your mouth right down to your anus. You can even have them in your esophagus!
 

xJillx

Your Story Forum Monitor
Hi Brenda and welcome! I am sorry it to you so many months to get a diagnosis, but I am glad you are doing a little bit better. Has the mouth ulcers and D subsided? Also, I am happy to hear you and the hubby worked things out - what wonderful news! I hope things continue to improve for you!
 
Brenda :-( Im sorry you feel so ill, I have a childcare center and luckily I have 5 girls that work with me to help when im not feeling good. I don't know how I would have been able to do it without them. I was so tired and still am that I hated it, all I wanted to do was sleep. Ive noticed that changing my diet and also taking Garden of life vitamins and probiotics i feel better. I also found that this forum has helped with ideas more than any doctor that i have seen :) I wish you the best hang in there :)
 

ameslouise

Moderator
Hi Brenda and welcome! Sounds like you have really been thru the ringer. I can't imagine having so many cankers at once - it was unbearable for me to have even one!

I hope you can get some relief soon and that you are able to keep your childcare open. Good luck - please keep us posted on your progress.

- Amy
 
Hey Brenda and welcome :)
I really hope you are doing okay - your story reminds me a lot of my own. When my symptoms first started, I was feeling run down with a lot of persistent mouth ulcers so I know how painful and annoying they can be. But hopefully they won't return even though you have stopped the pred. x
 
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